It's only ME, it's not my mind.

Seven Blind Men, an Elephant and a Weasel

2012-01-16T10:44:00.001-08:00

A Short Fable for Martin Luther King, Jr. Day

Seven blind men and a weasel checked out an elephant that was confined in a cage in the zoo.

Each blind man felt a different part of the elephant and came up with a different description of the animal.

The weasel asked the elephant, "how do you feel?"

The elephant replied that it was tired of being trapped in a zoo, tired of being felt up and probed by blind men, didn't care to talk to a weasel and would like to return to its former life in the jungle.

The weasel said, "Are you kidding? I would love to be the center of all this attention. You must be crazy."

And because the weasel happened to have psychiatric credentials, it was concluded by all that the elephant was crazy.

Because it was a mad elephant, it was necessary to keep it in solitary confinement until it ceased its irrational thought habits.

The moral of this story is, Let my people go!

Patients for Sale

2012-01-12T05:31:00.000-08:00

Beware: market research corporation masquerading as patient forums.

A lot of things could be called a Patient Forum. There are some set up by patients, for patients. Others are set up by organizations, for patients.

Still others are set up by blood-sucking leeches, for their own profit. Callously capitalizing on your catastrophes, they invite you in to tell your story, with an invitation to write in a "blog" like this one on M.E.

Leading questions invite you to divulge personal information, and the invitation is, oh, so sympathetic and full of suggestions of vague helpfulness.

With questionable punctuation because they're too cheap too hire a competent editor, and they think you're too sick to notice, they make yourself at home:

The forums allow you to interact with other people in your situation and share information and experiences. Thus helping you on your journey through your or a loved one’s medical problems and challenges.

There's something odd here, you might notice. A couple of things are more off than the punctuation.

For one, there's this odd paragraph inviting comment on the difference between M.E. and C.F.S.:

Interestingly the terms Myalgic Encephalomyelitis and Chronic Fatigue Syndrome (CFS) are normally seen as being synonymous but Sir Donald Acheson* noticed that CFS and ME may be distinct, however reference to this difference is very rare. If you know more about this please do share your knowledge in the comments section below.

Wait though, you can't post any comments until you join something called "The Patients Voice."

Before that, there was the even odder pair of paragraphs about another thing to join, "The Patient Experience."

We have covered the subject in a couple of previous blogs including one about Medicalinsider – a CFS informational site (http://www.patient-experience.com/index.php/medicalinsider-chronic-fatigue-syndrome/). Also a rather aging general discussion blog whose comment disappeared when we changed servers. If you must you can find it here http://www.patient-experience.com/index.php/chronic-fatigue-syndrome-blog/.

"If you must you can find it here?" A "rather aging" blog, and its "comment disappeared." Don't you wonder why its comment disappeared? I do. I wonder also, why do they say, "if you must?" Do we have a mole in there, planting odd turns of phrase to clue us in?

New comments have been added to replace the "disappeared" comments. (Disaperecido: disappeared, is an ominous word. Comments, opinions, efforts to communicate, disappeared in a mysterious move from one holding place to another.)

The new comments are heart-wrenching stories by real patients. Either they aren't, really, but are written by cynical marketers to lure you in and elicit your trust; or they are real true comments left by real true patients, in which case, they're made of real blood and tears that are being sold as market data, and you're invited to share (give away free) your thoughts, too.

Go ahead, contribute to this effort to help patients inform the medical community! Your efforts will be sold back to you as an expensive pharmaceutical, targeted to your exact patient profile, and sold to your doctor through information they've harvested about him in similar "blogs" and "forums" designed to reap the inside information of medical professionals, the same way they're reaping and selling patients' information.

Let's see what happens behind Door Number One, shall we?

In Step 1, they get your basic data: name, contact information, gender, number and ages of children, medical conditions of children, and/or age and medical condition of person for whom you're a caretaker.

Step 2: tell them every medical condition you have, from acne and aneurism, to zits and zoomorphism, so they can match you up with appropriate surveys.

Step 3: tell them where you go for medical advice.

Click the button to complete your registration and they'll try to send a confirmation email to the fictitious address you gave them to check it all out without receiving their spam.

As you finish the registration process they'll show you some photos of models posing as people. When I was a 60-year-old man named Fie Woh (wack the keyboard to create your new name) they showed me a photo of two women of about 60 with hideous makeup and styling.

I thought that was a little odd. I went back and became Fie Woh, the 21-year-old woman. She got an extra photo for some reason: two photos, one a 20-something woman with her presumable mom and the other a couple nearing retirement age and considering their financial options. You know them. You've seen their picture on the wall of your local bank branch.

I suppose marketing research has proven that 60-year-old men are interested in mature women made up to look like hideous old bags, while mature people---and her interaction with them, perhaps as family members---are relevant to the interests of a young woman.

We ought to see the picture of the mad cynic who dreamed up this site, on the wall of our local post office.

I want to share more I've found of this story so far, and it would be revealing to go ahead and make a dummy account from a dummy email address to get under their skin a little---three accounts really: one as a patient, one as a medical professional and one as a health care products client. I could count up the spam I receive in each account and try to calculate how much money they're earning from clients to compose and send so many badly-written emails.

(See, that's what I'm really on about, probably, right? You were thinking that, perhaps? I'm just jealous of some hack who earns a living writing what fills my junkmail box.)

I could have so much more fun in their Wonderland but I can't, right now. It's 3:00 am, I've had two hours' sleep and of course there are a thousand other things I should be doing instead of this if I must be wide-awake.

(Parenthetically, it's so unjust: while the sickness is stealing sleep and sapping energy, completely disabling us, the system simultaneously piles on the paperwork, and the sicker you are, the more paperwork there will be, until you're considering retirement on the wall of somebody's local bank branch, while a 21-year-old named Fie Woh watches you from her internet, and wonders what she will do, as caregiver for her ailing parents, children or self.)

So just real quick for now I'm going to give you a couple more of the interesting links and quotes, and then leave you, perhaps to return to this story later ... although there are so many others to tell, in other wee hours of the night, equally astonishing. Quickly, now, before I give out, here are leads to more of the Healthcare Landscape story.

There's this link: http://www.patient-experience.com/index.php/chronic-fatigue-syndrome-blog/ their same pitch as the M.E. "blog" (do they know what that word means?) but this time they're calling it "C.F.S." Again, you are invited to register and comment.

There's this one: http://www.patient-experience.com/index.php/medicalinsider-chronic-fatigue-syndrome/ where you can connect to this one: http://www.medicalinsider.com/ where you learn this:

Health-Spy.com rebranded
a.k.a. , as of 29th January 2011 has been rebranded to Medical Insider (medicalinsider.com).

These guys used to call themselves "Health Spy." What a more honest name that was, sort of like "Blackwater."

Why is a company that has in its very name declared itself mostly interested in M.E. (before changing that name) using odd turns of phrase that particularly bait responses from people who are enthusiastic about explaining the difference between M.E. and C.F.S.? And why does it ask if they feel discriminated against?

There's only one reason these people do anything. There has got to be money in it.

The parent company is http://www.healthcarelandscape.com/ where you can enter as a patient, a healthcare professional or a client.

The health care professionals are sold the same menu as the patients---give us your data for free and we will sell it---albeit sold with a garnish of sesquipedalian jargon.

The Client tab is interesting: here, you can pay to receive the information given freely by patients and doctors.

We learn from the Coverage and Costs tab that they're operating on every continent except Antartica and Africa where there's no money to be made as a for-profit, and in the Client tab, under Patient Research, they describe for clients how the guinea pig farms or "forums" work:

These communities of respondents are pre-screened for medical conditions and degrees of severity. We also have details of Rx and OTC medication as well as demographic information. Our unique resource encompasses 400 therapy areas.

There's good money in demographics, and OTC medication too. Under Physician Research, the pitch reads, in far more medicotechnical polysyllablubber:

With over 40,000 respondents (and rising) across virtually every therapeutic area these panels will allow you to fulfill your qualitative and quantitative data collection needs across all research methodologies.

You have got to love research methodologies, when there's data to quantitate. It makes you feel smart enough to have earned that M.D. or maybe that research grant. So much more scientific than the way one should talk to patients, who are told:

It would be really great if you could share your story with us and comment on the experiences of others if you can.

Was I going too far, I wondered, thinking this site was a cynical exploitation of the chronically ill and our caregivers? I worried that I'd already nearly violated Godwin's Law, with allusions to Disappearing and Blackwater. Attacks on capitalism, accusations of more corporation than cooperation, and allegations of cynicism, are really unfair and small-minded of me when these honest people are trying to make an honest buck helping us by selling us to ourselves and everyone else.

I was already annoyed and ready to rampage when I saw the Wikipedia article on Myalgic Encephalomyelitis, earlier today. It must be carefully maintained by the NHS and the CDC. There you are, another conspiracy theory: NHS and CDC editors busy editing Wikipedia to keep neuro-immune disease in its place. It's as wild as my conspiracy theory that marketing corporations are out to make money.

Another project for another time: conspire to make and keep that Wiki thing on M.E. accurate.

As for M.E. versus C.F.S., my personal position is that ALL neuro-endocrine immune diseases by whatever inadequate name (all names being inadequate until a pathogen is positively identified) require increased research funding to develop better definitions, diagnostic tests, and while we're busy in the lab, what about effective treatments?

Research can be funded under the umbrella term of neuro-endocrine immune disease, and face it, most researchers are just going to be practical and apply for grants under whatever name the granting agency or foundation will support. Until science provides better name(s), quibbling about it only divides and conquers us.

I hate these crashes where the brain won't shut up. I'm going to try to sleep again, really, but I want to share one piece of news first.

My shrinking brain was energized by a very successful patient effort that hit the press these past few days. At last, inroads are being made against the UK's vicious cutbacks in disability benefits under the guise of reform, and the catalyst appears to be the Spartacus Report.

Congratulations to all the Spartaci who took part: People with disabilities pooled their efforts, providing case data, researching, writing and publicizing. The report was just released two days ago and already it has gotten results. The House of Lords defeated three government "reforms" that would further impoverish the disabled poor. The Spartacus report precipitated this victory in the House of Lords, demonstrated government's disregard for due process, and offered a brilliant template for action.

This is what we can do by cooperating, and focusing efforts on actions that have a chance of making a difference. Compared to Healthcare Landscapes' pathetic pitch to use the patient population for profit, I'm so gratified to see patients too smart to fall for propaganda, sharing data ourselves and using it ourselves in ways that actually improve our lives and chances of survival and improvement. I hope this is just the beginning of what could become actual reform. Imagine people receiving respect and needed assistance.

On that happy note, I'm off to sleep.

(Parenthetically, again, I do not advise using insomnia hours to complete official paperwork related to your benefits, or anything else that might have lasting impact, if you can't read and follow instructions. I could not, when I started writing this four hours ago, have instead completed bureaucratic paperwork because that uses a different and more shrunken part of my brain than does writing. I could not now that I've been thinking for four hours write the blog you have just read. I cannot, now, even read it. I could certainly not follow the three steps required by Healthcare Landscape to register and give them my data, which gives you a little idea of how the site passively culls the respondent population. Most of us, on many days, or after any activity, would not have the energy and cognitive skills to register or comment. Therefore their data are slanted, as are most studies', toward the less-seriously-ill and the misdiagnosed.)

* Healthcare Landscape doesn't bother telling you who this mysterious peer, Sir Donald Acheson, might be, but a quick Wikipediaing will tell you he was the doctor who coined the term "Myalgic Encephalomyelitis" in 1955. He died 10 January 2010, a year and two days before this writing. He served 8 years as Chief Medical Officer of the UK, ending in 1991. During that time, officially-recommended medical practice on M.E. patients in the UK was, and remains since that time, more harmful than good. Why is that? Anyone want to tell me in the comments? Where did he stand on the nature of the disease he named, and why didn't Dr. Acheson stop the Psych Lobby Sectioners? Just wondering, history...

P.S. Patients Like Me is a similar marketing farm "forum," which might be more subtle in its approach but still looked fishy enough to fellow patient Carole Carrick to cause her to click a few links and learn that they're no real patient forum, with concern and caring for patients, either. Please, chronic illness victims, withhold your personal data from these vultures. Thanks, Carole, for the inspiration and information.

Hazel's Wish

2011-11-17T10:07:00.000-08:00

Wish Upon a Hero is a site that was recommended to me by one of my friends who also has the neuro-immune illness that I and my daughter are contending with. A couple of years ago I contacted Make-A-Wish on behalf of my daughter Hazel, but they never responded. I don't know if my appeal to them just got lost in the pile, or if they made a decision that ME was not sufficiently life-threatening to entitle my child to some comforts and distractions. I do know that people with ME die of complications (much as AIDS patients do) aged 20 years younger than average. Besides those two robbed decades of life, there's the loss of quality of life, meanwhile. Hazel turned 18 without having celebrated one birthday since her 13th well and healthy. Hazel officially became an adult without having enjoyed the normal activities and pursuits of adolescence. Hazel deserves to have a wish granted, so I've turned to Wish Upon a Hero in hopes that kind heroes will see and grant Hazel's wish.

You can take a look at her Wish Upon a Hero appeal here: http://www.wishuponahero.com/wishes/?id=1064713 There's not room enough there to include all the details so I'm adding some information here that I linked to the WUAH appeal. So welcome, anyone coming to my blog for the first time from the WUAH link!

ME is Myalgic Encephalomyelitis, a chronic neuro-immune disease causing damage to our central nervous, circulatory and immune systems, with resulting intense pain and exhaustion and mobility impairment. My whole family of three - myself and two daughters - were all stricken by it in the Spring of 2007, when Hazel was 13. My younger daughter mostly recovered after a couple of years of illness. Hazel and I continued to worsen. No cure is known at this time.

Unable to work, we are on a severely-limited Disability income, below poverty level. We lost our home and half of our belongings. We moved several times in search of a sustainable living situation but everywhere there was either too high a rent to pay or too rural an area with limited access to vital medical and support services. We have finally returned to the county where we had our home prior to becoming ill, and are in a transitional housing program now which will help us find an affordable home within two years.

We still have hopes of becoming well someday as a small percentage of ME patients do, but when we had been ill for over two years, our chances of that diminished. So it has become increasingly important for us to create a sustainable life. We are in the process of applying for power wheel chairs to increase our mobility, we will need to look for and finance a van to transport those chairs, we're pursuing treatments that might at least reduce pain and slow the damage done by the disease, and if I can increase my health a little I might be able to do some work from home again.

Hazel meanwhile plans to complete her high school education and attend college if only at home and online. Beyond Homeschooling, this Bedschooling will require a powerful computer and, since Hazel's areas of talent and interest include music composition and computing, her wish is for components to build a computer that will allow her to compose, record and mix music with her keyboard and synthesizer. (Formerly a violin player, Hazel had to switch to keyboards because of pain.)

Building and maintaining her computer, and creating and sharing music, will not only give Hazel a creative outlet and an educational pursuit, but will also provide her with increased social contacts via the internet with people who share those interests.

The life of a mostly-bedridden 18-year-old can be depressingly isolated and dull. Hazel has so far born the isolation, pain, exhaustion, poverty and uprootedness with heroic acceptance and hopefulness but she really needs something more to go on. She'll be very grateful and make the most of the opportunities opened up by the equipment she's wishing for.

Here's the full wish list with links for internet purchase. If you would seriously like to assist Hazel, thank you very, very much from her grateful mom! And please visit the Wish Upon a Hero link for a way to contribute.
http://www.wishuponahero.com/wishes/?id=1064713

Thankfully yours.

Hazel's Wish List:

In an only vaguely sensible order:

ANTI-STATIC WRISTBAND (useful when you don't want to fry your computer)

Model: Belkin Anti-Static  Wristband

Price: $7.34

URL: http://www.amazon.com/Belkin-Anti-Static-Wrist-Adjustable-Grounding/dp/B00004Z5D1/

PROCESSOR (braaaaaains)

Model: AMD Phenom II X6 1100T

Price: $189.99

URL: http://www.newegg.com/Product/Product.aspx?Item=N82E16819103913

MOTHERBOARD (apparently a single parent)

Model: ASUS Sabertooth 990FX

Price: $189.99

URL: http://www.newegg.com/Product/Product.aspx?Item=N82E16813131736

GRAPHICS CARD (for graphics)

Model: SAPPHIRE AMD Radeon HD 6950

Price: $264.99

URL: http://www.newegg.com/Product/Product.aspx?Item=N82E16814102945

MEMORY (I keep forgetting things)

Model: G.SKILL F3-12800CL9Q-16GBRL

Price: $89.99

URL: http://www.newegg.com/Product/Product.aspx?Item=N82E16820231315

HARD DISK DRIVE (a useful pot to keep things in*)

Model: HITACHI Deskstar 7K1000.D HDS721010DLE630 (0F13180)

Price: $149.99

URL: http://www.newegg.com/Product/Product.aspx?Item=N82E16822145533

OPTICAL DISC DRIVE (apparently whoever invented them didn't know how to

spell disk)

Model: SONY BWU-500s

Price: $129.99

URL: http://www.newegg.com/Product/Product.aspx?Item=N82E16827118049

CASE (it's a mystery!)

Model: Silverstone RAVEN RV03

Price: $144.00

URL: http://www.amazon.com/Silverstone-Extended-90-Degree-Motherboard-RV03B-W/dp/B004X19B02/

POWER SUPPLY (for supplying power)

Model: CORSAIR HX850

Price: $169.99

URL: http://www.newegg.com/Product/Product.aspx?Item=N82E16817139011

MONITOR (blackboard monitor Vimes**)

Model:  Viewsonic VX2450WM-LED

Price: $179.99

URL: http://www.amazon.com/Viewsonic-VX2450WM-LED-23-6-Inch-Widescreen-Speakers/dp/B003Y3BJ7S/

KEYBOARD (it says silent, but it's really just less loud)

Model: Das Keyboard Ultimate Silent

Price: $135.00

URL: http://www.daskeyboard.com/model-s-ultimate-silent/

OPERATING SYSTEM (for being ridiculously overpriced, but necessary)

Model: Windows 7 Home Premium

Price: $177.03

URL: http://www.amazon.com/Microsoft-Windows-7-Home-Premium/dp/B002DHGMK0/

MICROPHONE (for calling very small people)

Model: Shure SM57

Price: $99.00

URL: http://www.amazon.com/Shure-SM57-LC-Cardioid-Dynamic-Microphone/dp/B0000AQRST/

WINDSCREEN (for screening wind, or possibly winding screens)

Model: Shure A2WS Windscreen

Price: $14.99

URL: http://www.amazon.com/Shure-A2WS-BLK-A2WS-Windscreen-Black/dp/B0002NIP98/

MICROPHONE CLIP (for the microphone to sit in)

Model: On Stage MY250 Shure Type Microphone Clip

Price: $4.35

URL: http://www.amazon.com/Stage-MY250-Shure-Type-Microphone/dp/B0002GXPRM/

MICROPHONE STAND (for the microphone to stand on)

Model: On Stage DS7200B Adjustable Desk Microphone Stand

Price: $12.99

URL: http://www.amazon.com/Stage-DS7200B-Adjustable-Microphone-Stand/dp/B0002M3OVI/

DAW SOFTWARE (for making beautiful music)

Model: Propellerhead Reason

Price: $395.00

URL: http://www.amazon.com/Propellerhead-99-101-0024-Reason-6/dp/B005GSZ39O/

POWER STRIP/SURGE PROTECTOR approximately $20

I think that's everything.  Total price: $2374.62 (more than I expected, sorry).

It might also end up needing a few additional cables.

Everything should come with everything it needs, but included cables are sometimes

too short.  Won't know for sure until everything arrives.

love,

Hazel (for making pointless parenthetical remarks).

*Winnie the Pooh reference

** Discworld Reference

(Copied verbatim from the list Hazel gave me, complete with silliness,

because it shows what a sweet humorous spirit she is able to maintain!)

Note: Apologies to those for whom the Wish Upon a Hero link won't work. The information there

is actually less thorough than what's here, but it provides a thermometer to watch our progress

towards funding Hazel's wish. If you would like to contribute, you can do so without going to

Wish Upon a Hero, by sending your contribution via paypal to:

 antimatter@QNET(dot)com.

Thank you!

The Spins and 2 Helps for Centering

2011-11-04T21:42:00.000-07:00

Forgive me if this isn't my most coherent post. I may try to re-write it later. I just want to get this down quick while it's fresh in my mind and before either the extreme illness of the past couple of weeks, or other demands of life, crowd it out. Though I write to breathe, I have not been able to write much lately, both because I am much more ill and because I have far too many obligations pressing me. On the rare occasions when I have energy it gets soaked up by paperwork and house keeping and doctor visits, so I don't get to write. But I want to jot this down quick now so I won't lose a couple of helpful ideas and also so I can maybe share them and see if they help some ME friends.

Okay, so, the story in brief is that though I have a ton of techniques for pain management at my fingertips, there are times when they just don't suffice. Lots of times. Tonight for instance, I got the spins very bad. Not surprising. A heavy-ish meal to digest, a ton of cramping pain and headache pain, blood loss from monthly flow, reaction to pain with endorphins in the brain while meanwhile my already low circulating blood flowed from my brain to my stomach for digestion---it all added up to a bad case of the spins on top of some hefty ongoing pain.

Very fortunately, my caregiver and friend Blair was over helping out. He has been coming two or three times a week and saving my life. He'd just done my grocery shopping and cooked for me and the kids and was washing up the dishes, and I was able to ask him for help, and he did some wonderful things for me; in particular he gave me rice and a memory.

First, he helped me lower my head and prop my feet up with pillows and a blanket supporting them, and made sure I was hydrated, and then when I told him I needed conversation or a story to help me keep time flow linear, he sat and talked with me and our conversation brought up these couple of different but very helpful things I want to share.

Blair's day job involves work with autistic children in schools. This meshes interestingly with work as an ME caregiver, because the two neurological diseases share many features. Blair will get me some terms later on; the point for now is that he recognized some things I was saying about what I was feeling with dizziness and from his bag of tricks as a classroom professional working with autistic children, he pulled something that was really helpful, and it was just a bag of uncooked rice.

If you ever have the spins, or just the feeling of craving weight on you; if you like your blankets heavy; if the lead apron at the dentist feels good to you; if gravity seems often to sit too lightly upon you and you can't ground or you feel the spinning sensation or light-headedness; if you wish you had a little pressure on your temples for that eye pain or that headache; grab a bag of uncooked rice or beans or whatever feels nice and throw that puppy onto your head, or forehead and eyes, or chest, or belly. Or hold it in your hand and squeeze it. I've had my rice bag in all those spots tonight. Right now it's on my head and without it I would not be able to type out these thoughts. What an amazing tool: a little bag of rice.

The other amazing help was Blair's memory of me, from back before I was ill. As we talked about the correspondences and differences between ME and autism I explained I had taken an online test that placed me firmly on the spectrum, though I know that if it had asked certain questions about pain and post-exertional malaise it would have differentiated me from an autistic person and pin-pointed this other category of neurological illness which I actually inhabit. But you see, I can sympathize greatly with the autistic these days because we share certain experiences of the world and its too-loud noises, too-busy rooms and too-bright lights.

I have a fair number of friends with whom I am still in touch (though I rarely see anyone) who remember me from other days, when I seemed a different person, but Blair happens to be the one who said it at a moment when I really needed to hear it, so I want to write it down and hang onto it for myself, plus I want to share it with you because maybe someone can give you one of your own: a memory of your self, back.

Blair said he knew I wasn't on the autism spectrum really, that it was the disease, because this me he sees now is not the woman whom he met, who went to film school and played elf-chess and was a member of a leper colony at the Renaissance Faire and in later years took her tiny kids to a big outdoor folk fest each year where all had a blast with family and friends. That woman was never a partier in the sense of drinking and carousing, but she wouldn't say no to the ballet or a Neville Brothers show. She had creative and academic energy and accomplishments, she danced hard in Senegalese dance class and came out glowing and ready to fund raise at the public radio station all night, she had social energy for family and friends and so many beloved activities.

What a great gift. I don't know which is best, my bag of rice or my memory through the eyes of someone who saw and admired me in those days. I am clinging to both right now, after he has left for the night, and I want every one of you who is suffering from ME to have your own bag of rice and your own friend's memory. Please ask someone articulate, someone you trust, someone who Knew You When, to tell you who you were. Just to remind you. Because we do lose touch with that person and while we are forced to let go of the activities, we maybe need to hang on to the lost self: the dancer, musician, athlete, community activist, worker, parent, teacher, student, the embracer of life we once were. May we each be blessed with at least one person who can share with us who we were.

I've just jammed this all out in free flow with no editing so I hope you see what I mean. This memory given to me from another's perspective is every bit as grounding and calming as the bag of rice on my head. That woman was real, and her abilities still live inside me if only as memories. I can neither dance nor socialize now, but the heart that did these things is still beating in here. Thank you, Blair, for remembering me and giving me back to myself. Thanks for this great bag of rice on my head, too. Thank you for spinning me back to center, where I can ground, and smile.

Got to go head down and feet up again now. That's all there is. I'm glad I jammed it out and hope when I read it again it will be saying what I meant!

Blessings.

Movies, Rock Stars, Attention

2011-10-09T18:22:00.000-07:00

MOVIE

Quite often we find that when an audience sees a film, they’re inspired to do something. So active cinema is trying to connect the dots between the experience of the story of the film, and people who say, “Well, what can I do?”

Zoe Elton
Director of Programming
Mill Valley Film Festival

(In an interview with KALW News)

With that in mind, Elton included in the Mill Valley Film Festival a British documentary about Myalgic Encephalomyelitis: Voices from the Shadows. It had its world premiere at the festival, yesterday. I hoped until the last minute that I might be able to attend, but I was too sick with Myalgic Encephalomyelitis and besides I didn't want to leave my daughter, who is sicker still.

Fortunately, those who missed the festival, and folks like my housebound self and my bedridden daughter, can see the movie throughout this month (Oct 2011), although only in the US and Canada because of licensing stuff, right here: http://mubi.com/films/voices-from-the-shadows

Wherever you are, you can watch the trailer here: http://vimeo.com/24683179

The trailer only begins to convey the impact of the film, which only begins to convey the suffering of millions of patients worldwide and the ineptitude of what passes for medical care. Think Snake Pit. It's a horror story that screams for action. "So we really want to see if a film can help make a difference. And that’s why we’re showing this film," said Elton.

ROCK STAR

Elton wanted to increase the possibility of translating Impact to Action. "So we decided to work with the filmmaker to show the film and to do a panel about the issues in the film. So we’re going to have a panel that’s including Dr. Jose Montoya from Stanford, who is kind of like a rockstar doctor in this area."

It's true; Montoya has a devoted worldwide following in the area of M.E.. I don't know if Wellies know about him, but to us Sickies he's a big name draw. (Thanks to my friend Lise for the term Welly.) The Wellies don't know about so many things in our shadow world.

What does it take for whispers from the Sickies in the shadows to be heard---to be acted upon---in the bright and busy land of the Wellies? Does it take a harrowing story of medical abuse, the cries of a young woman being dragged from her home to the hospital that will precipitate her death? Does it take a big name researcher like Montoya? Or would a real rock star help?

Stevie Nicks? Flea? Keith Jarrett? Cher? Randy Newman? All of these have been diagnosed with something like ME under one name or another. However (or perhaps therefor) none of them has had any energy to give to the cause of raising awareness to fund research and discover real treatments. Director Blake Edwards (Pink Panther films, Breakfast at Tiffany's), also a Sickie, tried having a fundraising party and Hollywood gave him the cold shoulder. Perhaps his widow, actor and singer Julie Andrews, could raise her voice in our cause, and be heard.

ATTENTION

We just want attention. The same way AIDS patients just wanted attention in the 1980s. Only we've gone on wanting for decades. While Polio has been determined not to be hysterical, while AIDS victims are no longer dismissed as being punished by God, while MS has advances from being mistreated as a form of madness to scientific study as a neurological disease, meanwhile ME, also classified as a neurological disease by the WHO, still is not treated with medical care but punished with abuse and neglect.

We don't just want attention, we need attention. Funding attention and medical attention and patient services. Four of us died in the last two weeks. One was only 18 years old.

What motivates you, Wellies? Do you need a rousing song, a pithy slogan, an eye-catching logo? We Sickies have tried raising awareness with all of these things and more, from our homes and beds, scooters and wheelchairs.

If you see the latest documentary, if you hear the Voices from the Shadows and they speak to your heart, what more will it take to make you phone or email your elected officials and demand that they fund research? How does Impact transform into Action? Please don't wait, as I did, until you and your children are ill.

I'd be delighted to have some dialogue in the comments. What causes have moved you to action? How?

EDIT: UPDATE 18 November
Voices from the Shadows filmmakers have posted info on their Facebook page re: a London showing 7 December, with panel discussion to follow. They said:

Please could you pass this info on to people you know who may be interested in watching the new award winning film - 'Voices from the Shadows' - Dec 7th in London, hosted by IiME with a discussion following, at the British Library.

More information about the film can be found on the film website http://voicesfromtheshadowsfilm.co.uk/

Nigel Speight is the guest speaker for the discussion panel.

A trailer for 'Voices from the Shadows' is at http://voicesfromtheshadowsfilm.co.uk/2011/trailer/

It sold out at the prestigious Mill Valley Film Festival in California Oct. 2011 and was Favourite International Documentary Award winner http://www.mvff.com/

"the most important and significant film on paediatric ME that has ever been produced "– Prof. Leonard Jason

"there is no way that my written words can do justice to this powerful movie and I urge everyone who feels up to it to watch the movie." 'thoughts about ME' blog

"There has never been a film like this, and there is apt not to be one again in the near future. "Voices from the Shadows” is a labor of love. It strikes from the heart – to the heart. Everyone who has an interest in this illness should see this film – from beginning to end." Prof Chris Cairns, 'Patient Advocate'

If you would like to watch this film hosted by Invest in ME in London - act now - tickets now reduced to £7 - must be bought well in advance from - http://www.investinme.org/Voices%20from%20the%20Shadows%20Screening%20London.htm

Thank you for your help with publicising the IiME screening of our film. Natalie and Josh.

Stop the Deaths: Share the ICC on ME.

2011-09-29T13:40:00.000-07:00

ME has killed two dedicated patient advocates this week. Meanwhile, the ICC on ME (International Consensus Criteria on Myalgic Encephalomyelitis) have just been published. The ICC on ME could have saved those lives, if they had been guiding the victims' doctors early in their illness.

How can we stop the deaths? We need more research, we need better treatments, we've needed them for decades and while we wait, we die. Why are we dying for lack of appropriate medical care? The fight must be carried to many fronts including financial and political barriers to research, but as individual patients, perhaps the one thing that holds many of us back the most is lack of clear definition and prompt diagnosis.

I myself might not have spent the last four years mostly-housebound, and my teenaged daughter might not have spent those same years mostly-bedridden, if the doctors we were seeing when we first fell ill had any notion of what they were dealing with. As it was, we went a year and a half undiagnosed.

A year and a half undiagnosed, is a year and a half untreated or mistreated. That year and a half of crucial time early in the illness translates to decades off of our life expectancy and immediate plummeting of our productivity.

Now multiply the loss of life-span and the loss of productivity by millions of patients.

If it did nothing else, the new ICC could help doctors identify the illness in its crucial early stage. Had we been diagnosed early, I might be in the work force and my kid could be a high school graduate attending a university.

The ICC represents the collaborative efforts of specialists from 13 nations, with a wealth of experience. We can encourage its adoption by the WHO, our national health agencies, and big research organizations in the corporate and academic world, but perhaps the most immediately effective thing we can do is for each and every one of us to print out this review in the Journal of Internal Medicine and take it to our own doctors.

It's a concise 12 pages. Give a copy to your primary care doctor, and if you're seeing a specialist give her one as well. Not only will this increase their understanding of the most current thought on your disease, if you have ME, but it may help save the lives of others yet to be diagnosed... or to be left dangling, wondering what's wrong with them while doctors scratch their heads.

"If you have ME," I said above, but most of all I want to encourage all the well folks to take this to their doctors, too. Tell the doctors that people with ME are dying for lack of a clear understanding of the definition and diagnosis of the disease. Tell them we want doctors to know, before more patients wind up as statistics of ME death.

EDIT: While sharing this in various places I have just learned of another death this week: A severe sufferer in the UK, aged 18, has just passed away. My own daughter lying in the next room as I write this is a severe sufferer, aged 18. PLEASE, please can the people who have not yet gotten sick take this disease seriously and take action.

Note: Credit for this action idea goes to Johan Mares in his brilliant blog, Life With ME/CFS.

Infinite Wisdom

2011-08-17T16:19:00.000-07:00

God made microbes
miraculous microbes
ravenous microbes
for God is always good.

In His ways mysterious
made virus and bacterias
and us, their cafeterias.
They thank Him for their food.

X & Ethics: an open letter to Science Magazine

2011-06-10T10:00:00.000-07:00

Dear Science Magazine,

Before you accepted their landmark XMRV study for publication in your October 2009 issue, you demanded months of verification work from Lombardi et al. They ran and re-ran the tests you required, and the result was conclusive: a very strong (~90%) presence in CFS patients of the newly identified retrovirus that had been linked to prostate cancer.

Completely satisfied at last, you published.

Now, less than two years later, you have suggested the authors retract that study, on the basis of other scientists' inability to find XMRV or related MLVs in strong connection with CFS.

Retract, although it has been less than two years since the publication of the initial study, and good science takes time?

Retract, although the negative studies were not subject to months of your own personally-overseen confirmation as was the Lombardi study before its publication?

Retract, although the negative studies did not replicate the Lombardi team's procedure in spite of the willingness of scientists on that team to facilitate replication of their methods?

Retract, although the studies unable to find XMRV or related MLVs in CFS were also typically unable to find them in healthy controls, whereas both Lombardi et al and Lo et al found close to 4% positive among healthy controls?

Retract, although many of the authors of articles questioning Lombardi et al are not even academically qualified to comment on issues of retrovirology?

Retract, although Dr. Harvey Alter stated that his study with Lo et al---a study involving participants from the NIH and FDA linking related MLVs to CFS---was confirming of the Lombardi paper?

Retract, although there are further studies in the works under the supervision of highly reputable scientists which may yet further confirm and expand what has already been learned about the relationship of CFS or ME with MLVs like XMRV?

Retract, although alongside more hasty negative papers the positive confirming studies are coming out now that enough time has elapsed for some of the more rigorous science to be done, including several papers just presented at the 15th International Conference on Human Retrovirus in Belgium this week?

Retract, although scientists have suspected for decades that the activity of symptoms in CFS (more commonly known in other English-speaking countries as ME) is consistent with retroviral infection?

Retract, although it seems strangely unscientific and perhaps even political that the suggestion that XMRV is a mere lab contaminant has been made only in connection with its appearance in patients with CFS and not connected to those with prostate cancer?

Retract, although such a retraction---and even your suggestion that it should be made---may have a chilling effect on funding of further studies that could finally prove or disprove the point?

Retract, although an estimated 17 million people worldwide are already ill with this devastatingly disabling and often deadly disease and millions more may become ill, who might not have, had further study been pursued in this area?

Those last two points are where the ethics go beyond those of most fields of scientific study and enter the morals of human life. With 17 million plus human lives at stake, do you really want to make a move that could dampen funding for further study?

XMRV is hard to find. Lombardi et al showed you a needle in a haystack. You said, "Wait, are you sure that's a needle and is it really in that haystack?" They showed you again. And again. You said, "Okay, We see that needle in the haystack and we'll tell the world you showed it to us."

Now other scientists are saying, "We can't find a needle in a haystack," and you suddenly say, "Well, it probably wasn't really a needle, or it was in some other haystack," and you ask Lombardi et al on that basis to retract their paper.

I'm not saying XMRV causes CFS or ME, but I'm certainly not saying it doesn't. I can't say either, if studies are retracted and science is stopped.

I don't want a magic charm. If I wanted a magic charm I would write to J. K. Rowling. I want science. I am writing to a magazine called Science.

As a respected publication in your field, you are trusted by your readers to exhibit the highest journalistic ethics, and as scientists, I expect you to promote, not hinder, science.

Science, please live up to your name.

Sincerely,
Kassy Fatooh

What do we want?

2011-05-07T13:44:00.000-07:00

We are housebound, bedridden, completely disabled, or struggling on in the workplace but unable to enjoy any life beyond the daily grind and the nightly collapse.

Do we want to die? Sometimes, but most of us hang on as best we can.

Do we want pity? A little sympathy, sometimes, would convey caring and validate our cause but no, there's no progress to be made from pity.

Do we want to lie down and give up? Again, sometimes, but every patient I know blogs, tweets, signs petitions, shares articles, makes art to sell to support research... participates in some way on patient advocacy and public awareness.

We want---not sometimes but always and immediately---what the victims of every other disabling disease get. We want funding for research.

We, myself, my two children, many of my friends, and millions more globally, are sufferers from neuro-immune disease (NID).

The following is from the newsletter sent to "Advocates 4 Answers volunteers by ANIDA (http://www.anida.co/).

The term neuro-immune disease refers to a group of complex multi-symptom diseases characterized by acquired dysregulation of both the immune system and the nervous system which may result in lifelong disease and disability. Included in this definition are similarly presenting illnesses such as ME/CFS, Fibromyalgia, Gulf War illness, and post Lyme disease. "Advocates 4 Answers" are helping by supporting a variety of issues that are critical to our search for answers such as:

- Requesting that neuro-immune diseases be defined and sub grouped by biological markers of disease
- Increasing National Institutes of Health (NIH) funding of neuro-immune diseases (NID)
- Requesting biological research across multiple institutes of health with leadership from the National Institute of Allergy and Infectious Diseases (NIAID)
- Designate funding for medical research "Centers of Excellence" for those with NID

These words convey strong, clear goals. Behind those goals lies the suffering of millions worldwide. Beyond those goals lies hope for some relief.

I'm willing to bet that the people signed up as "Advocates 4 Answers" are in the overwhelming majority patients themselves. We volunteer though we're so ill from NID we can't carry on normal lives. We stand up, fight, collapse, and as soon as we revive we're back at it.

I'm making this blog post from my laptop, in bed. I could have been lying here watching a movie instead, and to be sure, on many days that's all I can do. Some days even that's too much for me. Later today, tomorrow, later on in the week---I don't know when, but soon again, just sitting up will be too much. I'll fall down, I'll get up, I'll throw myself again against the wall of silence that makes me and my fellow sufferers invisible.

Please, if you are reading this and you don't have NIDs, please sign up at http://www.anida.co/ and join us. We want to do it all but we can't. We try so very hard to advocate for ourselves, but we need your help to advocate for us. With just a little of your time you could post a couple of flyers, maybe share a link here and there. With a few moments more you could write to your senator. Please stand with us, and, when we fall down, please stand for us.

The few researchers who care, know this: you will never meet a more grateful community of patients.

We don't give up hope that appropriate treatments will surface. After our hopes, we have lots of plans. When we get well we want to pick up our lost lives, we want to reclaim our friendships and work, we want to rediscover our hobbies and we want to shoulder our responsibilities. Many of us will remain health care advocates. Maybe, some day, the patient we advocate for will be you. Then, if no sooner, you'll be wanting what we want, too.

One Healthy Day

2011-05-03T16:32:00.000-07:00

What would you do with one day of perfect health?

The question was directed to my friends with neuro-immune disease, for whom one day of health would be one day of relief from constant pain and other debilitating symptoms.

These are folks who, on most days, feel lucky if they can get out of bed or out of the house. They have to budget their energy carefully---choosing for example whether to wash the dishes or vacuum, and knowing that doing dishes or vacuuming will leave no energy for cooking. If they go over budget, they pay interest with increased pain for days.

So what would they do with a whole day of freedom, and no bill to pay afterward? Live it up in Vegas or Monte Carlo? Sex and drugs and rock and roll? Hang out in bars with Hollywood stars?

The answers were very consistent:

I would spend time with my family and friends.
Go hiking in my favorite park.
Go for a swim, out to lunch with friends, art museum, then dinner and dancing with a theoretical somebody.
Take my kids to the beach.
Walk my dogs, visit friends, go to a salon for a real haircut.

Not the high life, just a taste of normal life, was all these people wished for, without exception.

May is Awareness Month for Neuro-immune Disease. This month, I would dearly love to see more healthy people get involved in our cause. If we have to do all the advocacy, then the dishes, vacuuming and cooking are never going to get done, much less a beach day with the kids or a walk with the dogs.

Remember, every day of health may be temporary. Neuro-immune disease can strike anyone, at any time.

The new flyer from the WPI lists these statistics:

• Anyone can become ill with a neuro-immune disease

• 1 in 300 suﬀers from ME/CFS

• 1 in 150 suﬀers from ﬁbromyaligia

• 1 in 110 children are in the autism spectrum

• Lyme disease is a fast growing epidemic (many suﬀerers develop a chronic illness)

• Hundreds of thousands of armed services members have Gulf War Illness

Please consider printing out copies of that flyer and posting them everywhere. Your local cafe, bookstore, church, community center, library or bus stop might be the place where someone sees the flyer and decides to help.

My two kids and I, if we had just one day with our health back, might savor some time hiking or kayaking. I'd love to go dancing. I confess I might be tempted to waste part of it catching up on the dishes or the vacuuming, but the outdoors and dancing would take precedence if I had only that one day.

How about if we had our health back for good? Me back at work, both my kids heading for college, in summer we'd take that road trip we always wanted across the continent... ahhh!... but I would also make time out of that busy, healthy life to help others who were not so fortunate.

Yes, I am trying to guilt you, here. Pleeeease, can I get away with a little guilting, just this once? Yes, I'm wheedling. Yes, yes. I want you to actually do it.

Print out the flyer and post it in at least three places, please. Then feel good about having done so, and enjoy your healthy days.

Vote WPI & email Obama: Two Small Actions for Huge Results

2011-04-24T11:44:00.000-07:00

Friends, these actions are important enough that I'm blogging when I shouldn't.

I pushed too hard last week (and of course we never know how much is going to prove to be too much), so now I'm paying in pain for having dared to run a couple of errands, go to a couple of appointments and write short posts a couple of times. It hurts enough to make it clear to me that it's not worth it to push. I need to conserve more of my limited activity-time to take care of myself and my two children.

Nevertheless I also need to blog right now, to let as many people as possible know immediately about a couple of quick actions that could have tremendous results. That's for me and my two children,too, just as much as it's for millions of other sufferers. I hope healthy people will take a moment to pitch in and help.

Please join me in spending a little energy on these quick actions. I believe actions both can be done from any country. If it turns out I'm wrong about that, please let me know in the Comments and I'll edit this. So, here are the two actions, with details further below.

~Actions~

Action 1: Please email President Obama and ask him to follow up on the promise he made to Courtney Miller in response to her question about her husband Robert Miller's illness.

Action 2: Please vote for Whittemore Peterson Institute for Neuroimmune Disease in the contest for $20,000 from Chase Community Giving.

~Details~

Details for Action 1: Please email President Obama and ask him to follow up on the promise he made to Courtney Miller in response to her question about her husband Robert Miller's illness.

On 21 April 2011, President Obama held a Town Hall Meeting in Reno, Nevada. Courtney Miller, activist wife of neuroimmune disease sufferer and activist Robert Miller, was called on. For a full transcript and video of the entire Town Hall you can go to Shallow Nation. Here's a transcript excerpt of just that question and answer:

It’s a young lady’s turn.  Right here, in the red.  Right in front.  You got a microphone coming.

Q     Mr. President, my name is Courtney Miller (ph).  And I want to thank  you for returning science to the national priority.  And I need to ask  for some help for my family.  My husband has chronic fatigue syndrome,  which is an illness very much like multiple sclerosis.  And we spend  billions of dollars in this country on roughly a million patients for  disability and Medicare and lost tax revenue and lost productivity, and  we spend less than $6 million for NIH research on this illness.  And I’m  asking you for my husband and my kids, who want their father to be able  to go to their baseball games, if there’s a way to make improvements on  that.

THE PRESIDENT:  Well, let me, first of all, say that you  are absolutely right that we’ve tried to put science back where it  belongs.  (Applause.)  I am a Christian and a person of faith, and I  believe that God gave us brains to figure things out — (applause) — and  that we’ve got to use science to make life better for our families and  our communities and this planet.

That’s one of the reasons why  part of the Recovery Act was reinvesting in National Institute of Health  — NIH — which does a huge amount of the basic medical research that  ends up then creating so many of the scientific advances that are making  our lives longer and making our lives better.

Now, I will confess  to you that, although I’ve heard of chronic fatigue syndrome, I don’t  have expertise in it.  But based on the story that you told me, what I  promise I will do when I get back is I will have the National Institute  of Health explain to me what they’re currently doing and start seeing if  they can do more on this particular ailment.  Okay?  (Applause.)

Bob Miller and family have sent out an appeal for follow-up emails to be sent to President Obama. You can read that appeal in this note on Facebook from R.M.C.F.A (Rocky Mountain CFS / ME & FM Association.)

The web link for contacting the President is: http://www.whitehouse.gov/contact and the Millers ask that we select "Health Care" in the subject line and keep our messages brief and to the point.

That was pretty easy. Now, the second one is even easier and can mean tens to hundreds of thousands of dollars for crucial research and urgently-needed clinical care for millions of patients suffering worldwide.

Details for Action 2: Please vote for Whittemore Peterson Institute for Neuroimmune Disease in the contest for $20,000 from Chase Community Giving.

Chase Community Giving is a program via Facebook which Chase Manhattan Bank uses to distrubute millions of dollars to worthy causes, choosing the recipients by popular vote. Every Facebook user who "likes" the Chase Community Giving page gets up to ten votes. Please cast one of those votes for WPI, the Whittemore Peterson Institute for Neuro-Immune Disease.

WPI is committed to solving neuroimmune diseases and sharing their solutions worldwide. So your vote helps the ME patient in Scotland and the patient diagnosed with "CFS" in New York, the child in Belgium with Autism Spectrum Disorder, the mom in Spain with Fibromyalgia and the veteran in Montreal with Gulf War Illness.

WPI is integrating its research wing with its patient clinics and sharing information with researchers and clinicians worldwide, to get as many answers as possible out to as many patients as possible, as quickly as they can. The opening of the clinic has been stalled by lack of funding but a generous foundation grant from NV Energy is going to help, as does every donation of a dollar, a pound or a Euro in the Count Me In campaign.

One foundation grant and thousands of individual private donations won't be enough. It's rare that we have an opportunity to influence the awarding of a gigantic foundation grant, but that's what we get to do through Chase Community Giving. WPI is competing for $20,000 in round 1 of voting, and will compete for up to $500,000 if it advances to Round 2.

So the quick action is this---and if you don't have a Facebook account please consider taking a moment to create one, even under a pseudonym, to help along this excellent cause---start by going to Chase's https://www.facebook.com/ChaseCommunityGiving page on Facebook.

Now, press "Like." (You can always "Unlike" later if you want to.)

Next, go to where the voting happens: http://apps.facebook.com/chasecommunitygiving/

In the search box labeled "Find Charities...." on the upper-mid-right of your screen, type in the words: Whittemore Peterson Institute.

That gives you a link to a page with a bit of information on WPI, and a nice big button labeled, "Vote." Press the Vote button and you're done!

Of course it would be great if you would also share both of these actions with all of your contacts, asking that they, too, send an email to the President and cast their Chase vote for WPI. These actions take so little time and could hold so much promise for millions who, like me, spend a lot of time in bed with their pain, unable to write a blog post. That is, people in the situation I'll be in, a couple of hours from now, as I pay for writing again.

Thanks so much, and please increase global happiness: Enjoy every moment of pain-free living you can get.

Help Theda Myint

2011-04-20T09:25:00.000-07:00

The amazing thing about being a part of a neglected patient population, is how, unsupported as we are by the medical establishment, we rally to support one another. Last night I got the word about Theda Myint. Though nearly done-in I immediately shared the information I'd received via Facebook and Twitter. This morning I wrote a letter. Now I need a rest, but I want to share the information here and perhaps motivate more people to get involved. Here's what I wrote:

(Honorable Prime Minister Gillard;)
(Honorable Minister Hames;)

I am writing from California, out of concern for the care of Theda Myint. Fellow ME patients around the world were shocked by her transfer from the emergency ward, where she was finally getting some pain relief, to a psychiatric ward.

ME is not a psychiatric illness, but as with any chronic pain illness such as cancer or AIDS, unremitting suffering does cause patients all too often to make attempts on their own lives. Relief of symptoms is the best way to save lives. Ms. Myint, in being confined to the psychiatric ward, was not only given inappropriate treatment but was denied the treatment and diet that could better support her through this complex illness.

While we await reasonably funding of appropriate biomedical research and long-overdue identification of the pathogens at the root of the disease, ME is best treated with a highly-individualized program of pain relief and symptom management. A wide variety of medicines and dietary approaches are prescribed for ME patients' physical distress, with in some cases the major problems being cardiac weakness and POTS, in others neural pain, or insomnia, gluten intolerance, or mitochondrial malfunction... or all of the above and more: a whole panoply of possibilities that manifest differently in each individual patient.

The right treatment approach is not only different from one patient to another, but can differ in the same patient over time, so that a treatment plan takes much patience and skill to develop over time and may involve coordination of complimentary Western and Eastern medical traditions, coordination of varied practitioners and clinics. To suddenly wrest a patient from this process and consign her to psychiatric care makes as much sense as removing a cancer patient from the care of an oncologist and assigning him instead to a podiatrist.

Too many lives have been lost already through the psychiatric mismanagement of ME. Internationally, patients, doctors, researchers, and advocacy organizations are watching and will not stand by and see another ME sufferer consigned to the snake pit of inappropriate classification. Psychiatric treatment has its place in psychiatric illness, but ME is a neuroimmune disease and its mis-assignment does no favors to the understanding of physical or mental illness. Treatment of ME as a psychiatric disease, kills patients.

Researchers at the University of Nevada, Reno, quite near my home, and around the world, are taking great strides in the understanding of physical processes in ME. I trust that you'll do everything in your considerable power to see that the progress of ME treatment is not sent backwards in your country, at this time of such great opportunity and advancement. Please use your office to insure that Theda Myint is allowed to pursue her own best individual treatment, and that while she hangs on from one painful day to the next, your government fund to the maximum extent possible biomedical research in ME.

Respectfully,
(Creek Feet)

I welcome anyone who wishes to use or adapt my letter. There's another one you can use, written by fellow patient Kati Debelic, here: http://www.facebook.com/notes/kati-debelic/help-theda-sample-letter-to-the-government-of-australia/155819144481608

The links for contacting the PM are here: http://www.pm.gov.au/contact-your-pm

For contact info of Health Minister Hames go here: http://www.parliament.wa.gov.au/Parliament/Memblist.nsf/WAllMembersFlat/Hames,+Kim+Desmond

The article that alerted the patient community to Theda's predicament: http://www.watoday.com.au/wa-news/chronic-fatigue-victim-theda-myint-locked-up-at-fremantle-hospital-after-euthanasia-attempt-20110419-1dmuu.html

And now off I go for what's now a doubly-needed rest, with a heart full of thanks to the journalists who are more and more often helping to publicize the awful predicaments of ME patients, and with gratitude that I'm a part of such a wonderfully active and caring community of patients worldwide. We are not going to just go away, and we will see our way to appropriate treatment, together. Healthy folks, we could use any help you can give to raise awareness and demand funding for the research of this debilitating and infectious disease.

Email Testimony to MECFSAC

2011-04-18T13:34:00.000-07:00

Dear ME-CFS Action Committee:

On September 14, 2010, I sent my heartfelt and painstakingly-composed input for your last meeting. This time, as preparations are underway for another meeting, I am too sick to write.

My two teen-aged children are also still sick. Our lives are still on hold, except for the pain part, which proceeds vigorously.

Not much has changed since I wrote in September so maybe you could just re-read the email I wrote then. Same message: we patients continue to be sick and we need action. We don't want more people to get sick and join us in this hell. But since I last wrote, more did. People always get sick. What can you do, eh?

Oops. There is the one important thing that changed. I heard that the committee has changed its name from CFSAC to MECFSAC. And the A now stands for ACTION, right? Good.

Thanks,
Creek

~~~ below is what I wrote in Sept ~~~

To Wanda Jones, Executive Secretary of the CSFAC, Kathleen Sibelius, Francis Collins, Thomas Frieden and Elizabeth Unger:

I am very ill and you are very busy so I won't take up much of your time with my contribution to the public testimony for the upcoming CFSAC meeting.

Another reason for keeping this brief is that today is my daughter's 17th birthday. I want to devote what energy I can to making this as pleasant a day for her as possible. This is the 4th birthday she has been ill. Imagine spending your 14th, 15th, 16th and 17th birthdays---and all the days between---lying in bed: your entire span of high school years lost to constant pain.

There's so little I can do to provide comfort as I also am ill, unable to work and provide the comforts that a healthy parent can bring to a sick child, from pleasant distractions to decent medical care. In any case, there has been no decent medical care, no appropriate proven treatment, for people with our illness. But now at last promising treatment is at hand.

There is no time for us to wait. Every day that funding is delayed is another day I don't work. Every day wasted on redoing the same old studies, retracing the same old research steps, re-positing the same worn-out theories, is another day that my daughter lies in bed in intense pain.

The change has got to happen now for us and for millions like us. We need you to use your knowledge and positions now to make that change happen.

Not only is the link of ME/cfs to MLVs strong, not only has the research been confirmed, not only has the new research strengthened the initial evidence, not only has XMRV been proven susceptible to antiretroviral drugs already approved in treating HIV infection, but beyond all that people who have been able to do so have tried HAART and similar antiretroviral treatment and they have improved.

Can you imagine functioning for years and years at 40% of normal activity? Think of any action you feel responsible to take, anything you enjoy doing, anything you dream of doing, and cross it off your to-do list. Wash dishes? Take a vacation? Make a difference in your community? No, no, and no. Lie down and endure the pain. Can you imagine living like that?

If someone said that a drug already in use for other illnesses might restore you to 80% activity in mere months, would you not wish to try that drug? Or would you soberly insist that clinical trials and prescription approval be delayed until the pathological mechanism of the retrovirus was fully understood and independently confirmed in double-blinded studies at multiple research facilities and brought to publication and subjected to further debate?

Suppose it was your child lying in the next room, bravely trying not to worry you by moaning or complaining? I am sure you have both the compassion and the imagination to see the need. If I were well enough I would be standing right in front of you today making this demand on behalf of my child, myself, and all of us many millions, if that would make any difference. But you don't need us to stand in front of you. You know what we are all saying to you, and to our doctors, and to the press, and to our elected representatives.

Fund Clinical Trials Now.

Thank you for your attention to my brief appeal: I hope to give my daughter good news after your committee meets.

Sincerely,
Creek

Agatha and Appearances, Ampligen and ARVs, Algernon and Acceptance, Anger and Advocacy

2011-03-21T13:12:00.000-07:00

Fans of Louise Fitzhugh's Harriet the Spy will remember Agatha K. Plummer, the wealthy woman whose hypochondria confines her to a bed-full of bonbons.

IMDb provides this bio for the character as played by Eartha Kitt in the 1996 movie adaptation:

"She was rich. She stayed in bed all the time. She was very negative. But she proved people can change, because in the end she got out of bed and learned the delights of using a reducing machine."

Agatha K. Plummer is able to get out of bed very suddenly, in fact, the minute she hears from her doctor that she is terminally ill. She defies the prognosis and gets busy living the life she has been avoiding.

That's very nice for Agatha K. Plummer who no doubt was getting tired of eating bonbons, ordering her maid about and whining to her friends on the telephone.

But I am afraid of Agatha K. Plummer. I'm afraid that she's the image that comes to mind when people learn that I, healthy by outward appearances, am housebound by illness. Indeed there are even people in the medical profession who have an Agatha K. Plummer image of Myalgic Encephalomyelitis (ME), who believe that if we changed the way we think, we ME sufferers could cast off our bonbons and walk.

The reality is that we would love to have a miracle cure. We are always looking for one. In fact we are notorious for trying supplements, exercise regimes, alternatives and self-helps and prescribed medications, in hopes that the next will be a cure or at least provide a little improvement. They don't.

Sure, there are a small percentage who report full or partial recovery. Many attribute their success to This Protocol or That Regimen. These protocols and regimens are often expensive and of course not 100% reliable or everyone would be cured by now.

I won't suggest that This Protocol or That Regimen never actually helped anyone. I myself find some relief from insomnia via herbs prescribed by my acupuncturist and some temporary escape from pain through his needles. I can shave away a little pain with prescription medications. I meditate, take hot baths with epsom salts, hold restorative yoga poses, use distractions, blog, maintain a virtual social life, eat chocolate as needed*, and all of these things are helpful to some degree.

I will suggest that none of those are a cure or even an appropriate disease treatment. Some of the people who feel better after months or years of illness may have been going to improve anyway. A small percentage just do. Their illness may have been caused by other pathogens than those affecting the sufferers who don't improve, other factors out of their control may have contributed to their ability to bounce back, the treatments may have helped a process that was already occurring or cleared away opportunistic infections or other contributing factors enough to improve their health dramatically.

Myalgic Encephalomyelitis is a seriously debilitating neurological disease whose measurable physical effects include demyelination and other damage to the central and peripheral nervous systems, cardiac and circulatory weakness, anomalous proteins in the spinal fluid, increased cytokines subsequent to even mild exertion, and more. None of the treatments offered address root causes.

So we can't just get out of bed and learn the delights of a reducing machine, like Agatha K. Plummer.

Another way in which we are not like her is that most of us are not wealthy. Many of us had reasonably comfortable incomes before illness, many like me were struggling but managing, but once we're ill most of us are struggling at best. Few are in a position to afford a maid, or spend vast amounts of money trying out treatments. Indeed, that we spend any money on supplements etc., that we push our limits to read and write and share theories and the latest research, shows how not-Agatha-K.-Plummer, how not-hypochondriac, we are. We try desperately to find some relief and believe that with research there will be effective treatment.

No one can see how hard we try. They can hear us occasionally complain but they can't hear how often we hide our pain. They can see us looking well but they can't see how much effort it took to shower and dress, nor do they see us on the days when showering and dressing were impossible. That's appearances for you: we look like Agatha K. Plummer and at it's impossible to see our profound energy depletion and our pain. It's hard to see why we don't get our fat asses out of bed or at least get some mental help for goodness sake.

There are some treatments that show real promise. I'm thinking in particular of Ampligen and antiretrovirals (ARVs). Happily they've been shown to restore ME sufferers to near-normal levels of activity. Sadly, they call to mind another fictional character, Algernon.

Flowers for Algernon is Daniel Keyes' story of a man and a lab rat who share tremendous gains and losses. The man, Charly, is a developmentally disabled adult working as a janitor in a research lab. Charly's fond of the lab rats, and particularly Algernon, a rat who's being given an experimental treatment to increase his intelligence. When it works, well, brilliantly, Charly undergoes the same treatment and experiences the thrill of mental acuity.

The sad part is, it's temporary. Algernon loses his newfound abilities and dies, Charly follows suit, and the poignancy of his awareness that he's losing ground is heartbreaking.

And that's the sad part with Ampligen and ARVs.

Ampligen has not gained approval by the FDA, despite decades of research showing measurable improvement in ME patients taking the drug. The company that manufactures Ampligen can't afford to continue providing it to test subjects, while it is meanwhile prevented from selling it and must continue the expensive effort toward FDA approval. So patients who volunteered for drug trials experienced the thrill of regaining mental and physical abilities, only to end in the agony, Charly-like, of seeing those gains fall away as they sank back into previous states of disability or worse.

ARVs meanwhile have been taken by a few ME patients on their own initiative, only recently, since the October 2009 publication of the discovery of retrovirus XMRV strongly associated with the disease---notably, by Dr. Jamie Deckoff-Jones and her adult daughter, both ME sufferers, who have kept over a year's public account of their results in her blog, X Rx. They experienced strong gains and then some leveling off and even losses, but the results so far continue to look good on the whole.

The drawback with ARVs is that they can be very hard on the body, they require constant follow-up with an experienced doctor, they are notoriously expensive and, while they are FDA-approved for treatment of HIV-AIDS, they are not approved for XMRV-ME, so won't be covered by most peoples' insurance. So they might not bring patients back to normal levels of activity, and what relief they do provide won't be available to most patients until many years of research and red tape have been crossed.

Most developmentally disabled people never got Charly and Algernon's temporary chance at improvement. Most people with ME aren't getting ARVs or Ampligen, and the few who have, may, Algernon-like, be unable to maintain the improvements they do gain.

How hard it is to accept the loss. I watch my own cognitive and physical abilities slip and feel the frustration of pounding on doors in my brain, to rooms I know are there but that are now closed off to me, and of trying physical activities I should be able to do and finding barriers, my body unable to respond or disproportionately depleted after the effort. Still I slam myself again and again against those doors and barriers. I know I should be able to do these things. I know I can. And yet I can't.

There should be vast amounts of research undertaken to find treatment for an infectious disease already affecting an estimated 17 million people worldwide. Sadly, very little research funding goes to ME, and what does is mostly misdirected to poorly-conceived studies, mismanaged, misspent. A few brilliant and dedicated researchers such as those at Whittemore Peterson Institute are making breakthroughs that could eventually save millions of lives, but meanwhile, in the long wasting of this illness, we have to practice acceptance. Like Charly we have to know it's going, and let it go.

ME patients become champions of acceptance... or die. One champion is Toni Bernhard, author of How to Be Sick, respectfully offering Buddhist techniques and tools for living with chronic illness. Another is Linda Crowhurst, and I'd like you to take a look at this post at Stonebird, the blog kept by her husband and caregiver Greg, and also see the video of the two of them linked in it.

There is something transcendent in the level of acceptance they achieve, something fine, in the sense that the utmost pinnacle of humanity is fine. That is in itself beautiful to aspire to, but there's something more.

Linda is patient and articulate despite the grip of the disease: nobody could mistake her for Agatha K. Plummer; and Greg is calm and caring though so careworn. Together they not only transcend the ravages of severe ME to reach acceptance, but alongside that acceptance they hold and hone their anger.

There's a lot to be angry about: the funding and research debacle, the misunderstanding and often deliberate misrepresentation of the disease by the medical establishment, the judgment of appearances by the uninformed.

The true art of Stonebird is not only the achievement of astonishing acceptance, but the alchemy of anger into articulate advocacy. Straight A's.

* Chocolate was actually "prescribed" in the 12-week pain management course I took at Kaiser Permanente. The doctors, nurse practitioners, physical therapists and psychologists in the pain management team recommend chocolate for a pain flare as it stimulates pleasure helping the brain redirect from pain channels, and provides a temporary energy boost allowing the patient to get recourse to other longer-term measures.

ME&CFS Patients and Researchers Share a Common Goal

2011-03-14T18:07:00.000-07:00

Recently I've been puzzled by a couple of articles portraying a drama that simply doesn't exist. I guess they think it's a good story: Impatient Patients versus Sober Scientists. It's an odd story. It doesn't add up and I'll tell you why.

In this story we desperate patients whine and importune the scientific community, demanding that they put carts before horses and give us a cure now, but research it later. The wise scientists sigh that while they understand our concern, we're actually impeding progress by disturbing them while they work in their ivory towers in the only reasonable way: slowly and painstakingly, making certain that they won't endanger us. We wouldn't want to take a drug that wasn't proven safe, would we?

Then there's the third figure: between the Sober Scientists and the Impatient Patients stands the Rogue Researcher. She understands the patients and we adore her. We take up all her lab time with our hero-worship and tearful phone calls, but we do that because she's the only one who seems to really care. She has gone out on a limb for us, trying to push her exciting new Theory X past the Reasonable Reviewers and Dauntless Doubters in the community of Sober Scientists.

When a scientific paper is published which seems to confirm Theory X, the Rogue Researcher quickly claims vindication, but when many more papers are more swiftly published which call Theory X into question she is even swifter to discredit them.

Those pesky Impatient Patients, meanwhile, refuse to see how much progress science is making in spite of an almost complete lack of funding.

It's a fascinating story, full of heroes, villains, and victims, and you can choose for yourself which is which. But it's a lie.

The true story can be seen in part right here: http://mcwpa.org/resources/research-funding-comparison/

Thanks to the ME/CFS Worldwide Patient Alliance for the easy-to-follow chart. It shows, clearly, how woefully underfunded research is for ME/CFS in the US as compared to some other neuroimmune diseases.

Take NIH's 2012 budget for CFS versus Lyme, for example. (CFS is the only name under which the disease receives research funding in the US; the name is a separate issue and since we are discussing US government funding here I'll call it what they call it.)

There are nearly 7 times more people suffering from CFS than from Lyme, but Lyme receives more than 4 times more research funding.

But why look only at CFS versus Lyme? There are plenty of patients suffering from both, or even suffering from one but misdiagnosed with the other. We need to see more research done on both those disease. And anyway, both are in the little leagues compared to the Big Neuroimmune Disease.

My researching brain is not what it once was but I've done my best to read the CDC's 2009 budget request summary here http://www.cdc.gov/fmo/PDFs/FY09budgetreqsummary.pdf

It looks to me like with an estimated near-equal number of sufferers, the CDC allotted over 200 times more money to AIDS than to CFS.

Now, maybe you think AIDS is more serious. But CFS kills as surely as AIDS does. It even kills in the same way that AIDS does: not directly but through secondary diseases such as rare cancers and heart failure.

The difference is that CFS kills more slowly. Instead of getting sick and either getting treatment or getting dead, CFS victims get sick and stay sick for decades: sick and disabled, drawing on government disability funds and social services. Taking a long time to die, we cost a whole lot more in the long run.

Well then, do we suffer less? Is the spending lower because we just aren't really that sick? More than one doctor has publicly said no, ME or CFS patients actually are worse off:

“… I hope you are not saying that C.F.S. patients are not as ill as H.I.V. patients. My H.I.V. patients for the most part are hale and hearty thanks to three decades of intense and excellent research and billions of dollars invested. Many of my C.F.S. patients, on the other hand, are terribly ill and unable to work or participate in the care of their families. I split my clinical time between the two illnesses, and I can tell you if I had to choose between the two illnesses (in 2009) I would rather have H.I.V.”
-Dr. Nancy Klimas, HIV and CFS Researcher and Clinician - as quoted in the NY Times Oct. 15, 2009

So there's really no reason for research funding to be so low for ME (or as the funding bodies insist on calling it, in this country, CFS). But the bottom line is, there's more than 200 times more money being offered for the study of AIDS, even though the patients already have treatments, the pathogen and method of transmission is already known and we already know how to prevent and to test for the disease.

ME patients have no proven treatments. The cause of the disease is still in question. Tests are being developed but meanwhile, not knowing how it's spread, we don't know how to prevent ME/cfs. So of course anyone can see that we ought to be spending more money at this point to research, and prevent the spread of, ME (or cfs).

Is it just that researchers aren't really as interested in boring old CFS as they are in exciting, glamorous AIDS? No. The glamor is where the dollars are. The motivation is where the dollars are. Even for researchers who have a strong interest in CFS research, the bottom line is, the ability to proceed is where the dollars are. Nobody can research in a vacuum, or without a lab and a paycheck. As long as there's next to no spending on CFS, there will be next to no research. That's all.

As for the Rogue Researcher part of the story, it's true that sometimes we're fortunate enough to have a researcher and/or clinician come along who cares so much about the plight of sick people that they put extra passion and commitment into their work. Those are the sorts of scientists about whom hero movies get made sometimes, and what is wrong with being a hero? Why the effort to portray the caring and committed as looking ridiculous to other scientists and being bothered by the very patients they're helping? The most committed and caring researchers need exactly the same financial support that a cold and uncaring researcher would require to carry out scientific inquiry.

So what researchers want is the same thing patients want. We share a common goal: a reasonable budget allotment for solid science to examine the biomedical workings of ME or, if the funding agencies prefer, CFS.

That's the real story. Researchers and patients require more funding for ME/cfs research. If there is an urgency in our demands, it's not because we want to push science through too fast and end up with shoddy results. It's because strides are being made and should be followed up. Studies show the effects of exercise on cytokines, the presence of unusual proteins in spinal fluid, neurological damage evident in autopsies and yes, retroviral infection in a majority of well-defined patients. These findings should all be followed up with more research. Other avenues of biomedical inquiry should be pursued. What little funding there is should not be wasted in repeating dead-end psychological studies. Funding should be increased and allocated to serious neuorimmune study.

The urgency is also because more people are getting sick every day. To help those sick, and to keep healthy people well, patients and researchers alike demand fair funding for the study of this devastating disease.

CBT & GET: The Studies, the Science and the Pseudoscience

2011-02-18T10:51:00.000-08:00

I'm more of a personal-experiences writer, definitely not a science writer, but for the sake of all my terribly ill friends who are being sent tripe by well-meaning persons, telling them to get well by pushing their limits and keeping a positive attitude, here are a few apt quotes and links.

To begin on a light note, here's an all-purpose reply for every one of those well-meaning efforts, from Sick Humor.

Fluff but not at all funny: the PACE Trials published yesterday in The Lancet, which ought to be ashamed for accepting such bad science for publication. Unfortunately this bad study is spawning the plethora of happy fluffy articles with which your friends and relations are cluttering your inbox.

Don't even click on those articles. What they say boils down to: "CBT and GET will make you well because we know what you really are is depressed and out of shape." Don't give them the satisfaction of a high hit volume.

Instead, you can tell your well-wishers politely or otherwise that they ought to take a look at the more scientific study by Núñez et al, published 15 Jan 2011 in Clinical Rheumatology, which shows that treatment with CBT and GET actually makes ME worse.

What's so unscientific about the study by White, Goldsmith et al in Lancet? To begin with, they aren't even studying patients with ME. They carefully selected their patient cohort to include only those likely to support the outcome they were looking for. They used the outdated Oxford Criteria which eliminate all patients with signs of neurological disease. Well guess what? ME is a neurological disease.

A patient describes the White, Goldsmith screening of subjects for their flawed study:

othersideofvenus (commenter to an article on the PACE study) wrote:

I took part in this study, and was randomised to the GET group, and I'd be very sceptical about its results.... My initial blood tests showed some signs of infection and inflammation so I was sent for another set which apparently didn't, so I could be accepted into the trial. The assessment/criteria forms which had to be filled out at the before and during the trial, did not mention symptoms after exertion or delayed onset fatigue, there was very little attention paid to pain and cognitive/mental issues were very blurred.
At the start of the trial, I had to wear an accelerometor thing for a week, presumably to measure activity levels. But at the end of the trial, this wasn't repeated. The fitness tests measured the number of steps I could do in a set amount of time, but paid no attention to the fact that I usually couldn't walk for 2 days after these assessments.

Why would scientists deliberately set out to create a flawed study? The entire approach to ME officially supported by the British health care system is based on treating the disease as psychological. It would cost a whole lot more money to treat the physical causes of the disease. Further, the people currently in power, gaining salaries, royalties, speaking fees and study grants, want to stay in power. Conflicts of interest exist among those who make grant recommendations. Here's patient Siobhan McElwee's succinct take:

This is what happens when a wastebasket sort of diagnostic criteria is used. The Oxford Criteria which was used in this study does NOT differentiate between being chronically tired and depression and bonafide ME/CFS which has distinct neurological components. There seems to be an assumption that ME patients are professional, fear ridden couch potatoes with no vested interest in getting well. I find this almost funny. In the 80’s they told us it was because we were doing too much and type A personalities. Now they say we do too little and are afraid of moving about. Those who push the ‘psych’ theories on ME can’t even keep their stories straight over the long haul.

There is far more to ME/CFS than being chronically fatigued, a point that the powers that be seem to be conveniently overlooking.

Last time I checked a retrovirus could care less what one thinks. To date there’s not been a single retrovirus that does NOT cause immune, neurological and cancerous effect in humans. Gamma retroviruses (of which XMRV is one) in other species causes immune, neurological and cancerous effect in the species that they infect. Why is this so hard for the medical establishment at large to stomach?

Could it be that it just might require that money is going to have to be spent to actually TREAT millions of truly sick people worldwide? That money is going to have to be spent to screen the blood supplies? That careers are based on pushing this form of psychobabble on severely ill men , women and CHILDREN?

For shame.

But if "follow the money" works to explain why false solutions are pushed, it also can help lead to the real science. Siobhan further points out:

Big Pharma companies like Abbot Labs and Glaxo Smith Klein don't invest millions of their own $$ into virology studies based on a psych treatable disease.

That's right, the pharmaceutical giants are betting their dollars on the retroviral connection. And you can't fake for example results that show, as Singh et al have shown, that Raltegravir and Tenofavir are potent inhibitors of XMRV in vitro.

Further, those drugs are working not just in vitro but in patients. To follow the story of two patients experimentally taking the antiretrovirals with excellent results, see X Rx, the excellent blog of Dr. Jamie Deckoff-Jones.

We're sick but we're not stupid. We patients aren't lazy or crazy---jumping jacks and chummy chats are not going to kill the retrovirus and the possibly numerous additional opportunistic infections that are wreaking havoc with our immune systems, our central and peripheral nervous systems and our circulatory systems.

Back as far as the 1980s, Doctors Peterson and Cheney were finding the CFS patients in their practice had minute, punctate lesions in brain myelination consistent with the cognitive losses they exhibited and that these lesions diminished and even disappeared with use of the experimental drug Ampligen, with patients showing simultaneous dimunition of the cognitive symptoms. Sorry I don't have a link for a study on this but it's documented in Hillary Johnson's excellent expose', Osler's Web, which I not only recommend you read, but I recommend you give a copy to each and every one of your beloved well-wishers who insult your integrity and intelligence with fluff pseudoscience promises of full recovery via the jumprope and the sharing circle.

In my last post, I used my beautiful, brilliant, tough and determined daughter as an example of one patient who needs real medicine, not CBT or GET. There are millions like her, waiting, while the grant money gets wasted on bad jokes like the PACE Trials.

Again, please appeal to your elected officials and write letters to editors, and blog and share, demanding real science. We need funding for studies on XMRV and other MLV pathogenesis, and on treatment with Ampligen, Raltegravir and Tenofavir, because what we have is infectious and debilitating retrovirus XMRV, not DUMB or LAZY. And work on convincing your well-wishers to help us with some real support for real science.

Thanks!

Please note: no offense is intended toward patients with, or doctors treating, real clinical depression, nor towards any reputable program of physical fitness or mental health. Yeah, I got a little scathing, but the scathe is directed at those who deliberately misdiagnose, mistreat and malpractice upon neuroimmune patients.

Rocky Works Hard: a Good News/Bad News Story Inspired by the PACE Trial

2011-02-17T18:05:00.000-08:00

We were working up a sweat in the garden, turning the soil one warm spring afternoon, preparing for planting. My kid Rocky paused for a moment and leaned on her shovel, its handle reaching higher than her head, and proclaimed, "I love working hard," and she dug in once again.

That's how she was at age 7, and that's how she stayed. No matter what she took on, Rocky dug in with a will. No turning back halfway on a hike or a kayak trip. No leaving half the dishes soaking and the counters dirty. No letting go of a research question until she had found not one but several answers. Rocky was a fighter and was delighted to conquer the rock she was climbing, the math problem she was solving, the new programming language she was teaching herself, the tough goals she habitually set.

At least, that's how she was, until one day, when she was fourteen, and she got horribly sick.

Well, everyone slows down when they have the flu. We all three got sick that spring, both of my kids and me, and we all slowed waaay down. That spring, we couldn't plant even a small garden.

When we'd been sick for nearly a month I got more worried. Every time we thought we were bouncing back, tried a school activity, a family outing, even a walk, slam, down we'd go again with the aches and sore throats and tremendous exhaustion. So off I took us to the local health clinic.

The doctors said it was a flu, maybe a respiratory infection. They checked for strep or fevers and sent us home advising the usual rest and liquids. And the sickness continued.

Months went by. We rescheduled activities, tried to pick up and keep going, but with each effort, slam, down we'd go. Rallies were followed by relapses. Bess was pale and listless, I couldn't concentrate on work, and Rocky, rarely out of bed, was in awful pain almost constantly. We were referred to rheumatologists, neurologists, infectious disease specialists.

The diagnosis after six months was "mononucleosis." After nine months it was "post-viral fatigue syndrome." We had been sick for a year and a half before a doctor said, "chronic fatigue syndrome and fibromyalgia." All that time we had been pushing ourselves, thinking a little exercise would help. "Try a five minute walk each day for a week," one doctor advised, "and then increase that to seven minutes, then ten...."

After one five-minute walk Rocky wasn't able to move for days. But she was determined. Up she'd get as soon as she was able, and try another walk. This kid who loved to hike and kayak, dance and research, write quirky stories and do tricky math, Rocky who loved to work hard, tried to take a five-minute walk and ended in pain and tears, barely able to get out of bed to take care of basic needs.

Nearly eighteen months into our illness, we had to move house. As we packed and carried boxes we felt like our arms would fall off. Again, a relapse to even more profound pain and exhaustion. And then we got the diagnosis of chronic fatigue syndrome and fibromyalgia, and began to research what that meant.

When we learned about Post-Exertion Malaise, it sounded so familiar. And when the Lights' study on exercise in CFS came to my attention, stating that "symptoms are often exacerbated following even mild exercise in CFS patients," I couldn't follow the medical jargon in detail but I could see that the study was a vindication, confirming with scientific evidence something we patients already knew. Exercise, body or brain, work or play, hurts. It hurts.

Unfortunately most hometown clinicians don't have tools or time to measure the pain we feel. We look fine. They can assume we're depressed or that the whole phenomenon is due to some misfiring of neurons. Following the best practices they were taught, they'll give us painkillers and antidepressants, cognitive behavioral therapy and graduated exercise therapy, and when we refuse to get well the poor beleaguered doctors throw their hands up in frustration.

Rocky is 17 now. Nearly four years have passed since she got ill. Sometimes, sitting up is too much. Looking at a screen to watch a video or play a game can be too much. Sometimes all she can do is lie in bed in a darkened room, trying to be as still and quiet as possible, because light and motion exacerbate the agony.

And it's agonizing to know that the friends she used to climb trees with and swim with, visit museums with and play D&D with, play hard and work hard with, can all continue busy lives full of education and recreation, while she lies quiet, waiting for a treatment that will actually help.

The hardest work Rocky ever did: putting up with ME/cfs day after painful day.

And now, some good news/bad news.

The good news is that research like the Lombardi study, Science, Oct 2009 and the confirming study by NIH and FDA scientists Alter and Lo are narrowing in on a possible trigger for all the many physical processes, the neurological and cardiac damage and viral symptoms, everything that is ME/cfs. Turns out there's a strong link to a retrovirus also found in prostrate cancer. Identifying this retrovirus and how it works may be the key to effective treatment for ME/cfs patients; a return to life and normal hard work for Rocky and all of us who work so hard at surviving.

But it's good news/bad news. We just recently learned that Rocky tests positive for that retrovirus, XMRV. This means we probably all three are infected. That's bad news because nobody wants to be infected with a retrovirus. An infection with XMRV, same as with related retrovirus HIV, is an infection for life. But it's also good news because again, it might at least point our way towards treatment. Then again, more bad news is that the treatment is liable to be very expensive and it might take years for it to be FDA approved and hence covered by insurance.

And finally, a piece of bad news, but I'm hopeful it will blow over soon. All this while that we struggle to understand and cope with the disease that destroyed our lives and took Rocky's entire high school years away, millions of dollars have been wasted on research that persists in trying to pin the clearly-neuroimmune illness on psychological causes and/or suggest psychological and exercise-based treatments.

The latest waste, as I write this, is the PACE Trial out of the UK (where ME/cfs is notoriously snake-pitted, with patients like Sophia Mirza, a bright and passionate young woman like my Rocky, getting malpracticed to death with psychiatric mismanagement of a physical illness). The Pace Trial is claiming that we can get well with positive thinking and good healthy exercise. That's bull.

Yes, it's bollocks in UK parlance, and Malcolm Hooper Ph.D.,B.Pharm.,C.Chem.,MRIC isn't afraid to say so. He points out that the patients selected for the PACE study don't even have the disease being studied. Patients with neurological disorders were excluded from the PACE study, but ME is a neurological disorder. He quotes Dr. Klimas who stated that, to set against the PACE nonsense, "...you have a publication, written by a psychologist and well-regarded CBT expert to use when you want to argue that CBT helps people with this illness (as it does in every chronic disease model ever tested) but does not cure the illness.” He points to conflict of interest, a clear motivator for the sponsors and conductors of studies like PACE, seeing that they stand to benefit financially. I'll let Dr. Hooper's excellent article show you in detail why PACE is nonsense. Of course, a part of me dearly wishes it were not. I wish it helped.

If only it really were as simple as CBT and GET. Rocky would love to be back at work, and so would I. But we can meditate and be mindful, try one recommended therapy after another, exercise only to relapse and make therapy appointments only to have to cancel them because we're too sick to see the therapist. Millions of dollars are poured into studies while we remain ill, and the super bad worst news of all is, all those dollars are diverted from the serious, valuable, biological research that should be done now, to follow up on the exciting findings of Lombardi, Mikovits, Alter and Lo.

Rocky has XMRV and ME, and no matter what the PACE Trial may say, CBT and GET won't get her on her feet and into the garden again.

This is not the first time that the medical establishment has relegated an illness to the psych snake pit, only to later learn the biological causes. Polio and MS are cases in point. But the biological research has got to get funded or in the snake pit we stay.

We would appreciate it if readers would take a moment to call or write their elected officials, urging support for research into biological causes and treatments for ME/cfs. A letter to the editor or a mention in your blog would be great, too. HIV research turned a corner when people who were not infected took an interest. If you could devote some time to our cause, that would be very good news. The best.

Where's The Money? Well... where's the Action?

2011-01-30T11:57:00.000-08:00

The announcement that the WPI clinic, planned to open in May, must charge patients directly for services, and can not bill insurance, was no surprise to many but was certainly a disappointment to some.

I had hoped that the WPI's affiliation with a state university might give it easy access to Medicaid and Medicare billing, as some other clinics on the same campus are able to bill those insurers. Of course as Dr. Jamie so well explained the situation, the treatment anticipated at WPI is not the sort that any insurance, least of all those for the poor and disabled, might cover.

I have been sad to see one or two comments in some places accusing WPI of being out to make a buck, but it's hard to believe anyone could fail to understand that the research needs to be supported somehow. However, in the face of grants not being granted, patient contributions and patient fees can't be the only sources.

I have not complained but have asked, and upon getting answers I have commented and blogged, encouraging people to support and contribute to WPI and to do all they can to promote widespread understanding and concern.

We need a broader base than just patients and our immediate advocates, to support research and the creation of more clinics and more access as soon as possible. The sad truth is that while people wait for treatment, and wait, and wait, some die and more become ill. We are so close now. Effective treatments have been found and need only be clinically tested and approved. Sounds close but could be years.

We need to use our outside voices to get some action from the people, to multiply the voices demanding action from governments as well as to increase individual contributions and even to increase the likelihood that private foundations will make grants.

Private foundation grants as well as government grants are more likely to be forthcoming if the disease is given a higher and more credible profile than it has had in the past. There are private foundations which offer major support specifically for innovative treatment that can be replicated. Innovative treatment and a plan to help others replicate that in other clinics, is exactly what the WPI has planned. Exactly what the big money grants are always looking for. But those foundations like to have popular causes in their profiles of grants. ME/cfs needs to be made a more popular cause.

How to make the cause popular? How to get anyone to listen and care? Again, patients---exhausted and in pain---are not to be looked to, to do all the work. Patients have been begging for attention for decades. How to mobilize more healthy people? That's the question.

Were you cool in the late 80s, or only wish you had been?

2011-01-28T13:31:00.000-08:00

Dr. Jamie Deckoff-Jones, Director of Clinical Services for the Whittemore Peterson Institute, started her job with the unpleasant task of notifying patients via her blog that the clinic to open in May at WPI will not be able to accept any insurance, including Medicaid and Medicare.

It's time, and way past time, for healthy folks to join with patients to act up.

One anonymous person commented on Dr. Deckoff-Jones' blog post, "The idea that ME is being approched by nickle and dimeing poverty stricken sick patients is immmoral and criminal." Even that commentor understood that the WPI is doing all it can, but their frustration is justified: the burden of funding research can't lie with the patients.

Many patients with neuroimmune disease are completely disabled by the illnesses. Some can draw on savings or liquidate assets or get help from family or friends, some have exhausted all resources through years and even decades of illness. Many are unable to pay for medical care out of pocket.

Patients everywhere have been watching and waiting for word of the opening of the WPI clinic. The financial decisions the WPI is forced to make, leave many who had hopes of getting decent care at last out in the cold.

I'm confident that Dr. Deckoff-Jones and the WPI will do all they can to extend care to those of us who can't pay or can't travel, or both. I know we won't ALWAYS be on the outside looking in, but meanwhile sick single moms with sick kids living on disability, and those in even worse circumstances, must wait.

When I read the news I posted the Facebook status: "Health is for the Wealthy." Through no fault of the WPI, because of the flaws of the system and the lack of outcry among the general public, we rot.

But patients with life-threatening neuro-immune disease associated with a retrovirus and requiring expensive and, at first, experimental care, don't always have to rot forever. Remember those red AIDS ribbons and the motto, Silence = Death? Don't you wish you had been on the front line? Well, now is your time.

The WPI is doing what it can to advance research and provide patient care but it needs government grants and private contributions. To get those, we need the kind of public outcry ACT UP made back in those cool 1980s.

There are several excellent ME/cfs patient organizations, but one in particular is devoted specifically to making our voices heard. In December, the ME/cfs Worldwide Patient Alliance took out a half-page ad in the Washington Post that has prompted a swell of media coverage.

With plans to publicize the next big biological finding and put out a public service announcement, and further follow-up to the Washington Post ad via radio and print interviews, MCWPA is doing a great job of getting the word out. So one way to be cool is to support their work.

Of course direct support of WPI, as well as P.A.N.D.O.R.A. and other patient organizations is needed.

Then there's the stuff we make up on our own and do by our little selves, like Sock It To ME/CFS which a friend and I launched last ME Awareness Day, 12 May 2010. The socks are slowly but surely arriving and we're hoping they'll march at meetings of the World Health Organization, National Institutes of Health and more, but the effort could die without some help from people who aren't as sick as we are.

You can make up your own stuff and get it out there. Maybe you blog, maybe you create videos and post them on youtube, maybe you'll stand on a street corner with a sign. Write your representatives. Make some phone calls. Educate yourself and others. Please do something.

Whatever you do, you'll be able to say you did something: you were cool in 2011. And it could help get research done and clinics funded so people like me and my kids can get well. We'd like that. That would be very, very cool.

The XMRV Hunt and Me

2011-01-21T13:22:00.000-08:00

Recently I got the results from my XMRV serology test: no evidence of antibodies. This does not mean I'm XMRV-negative: it just means that antibodies to the hard-to-find retrovirus did not show up in that particular sample of my blood. It may be that my immune system was so down, it wasn't producing the antibodies just then in sufficient quantities to be detected.

When I first got the results, I felt deflated. My hope had been for a positive test, since that would give me some understanding of the cause, and perhaps even guidance towards possible treatment, of a disease I've now had for nearly four years. But when I talked to other patients about it, they pointed out that this is only a setback and not a dead end.

They pointed out that some patients have encouraged the antibodies to show up by taking a short course of something (hormones for example) that would encourage the retrovirus' activity, briefly. Yes, patients are that desperate for an answer, risking a period of more severe illness to insure test accuracy. XMRV is good at hiding, and the trick is to lure it out.

They pointed out too that often it's the sickest patients who turn up this "no evidence" result in serology. It seems a harsh irony that the same thing that makes me spend many days bedridden and most days housebound, also makes me get this test result that, at first glance, looked like a dead end. I could be chock-full of gleeful little retroviral cells, proliferating cheerfully while I sustain damage to my central and peripheral nervous systems, cardiac and other functions. And here am I, so unable to produce antibodies to fight them, their presence doesn't even show up in serology.

Or maybe what I've got is really something else: heavy metals contamination, Lyme Disease or a rare leukemia. Of course any of those could be present alongside XMRV. It would be good to know. My new GP and I are getting what tests we can, for other possible pathogens. Some have been tested and re-tested for, while there are others that my previous doctors didn't hit.

Meanwhile, my XMRV options now: get retested in six months with the same serology test, opt for the more expensive virus culture test, or, being broke, try again to get included in clinical studies. I was actually told by a leading researcher that my two children and I were definitely on the list to be included in studies at the WPI, the research institute where XMRV was first found in ME patients. So exciting! But alas, that was two years ago. Since then, with the denial of six applications for public grants, the shortness of research funds has slowed progress at WPI, so we continue to wait to be included.

My personal hunt searches my own blood and that of my kids, for the pathogen that makes us so ill for so long. The greater hunt is worldwide, for research funding, and the truly great hunt is where those funds will be put to use: To explain the pathogenesis of XMRV in ME/cfs, Fibromyalgia, Cancers and more. To identify antiretrovirals and other medicines most effective in controlling the retrovirus. To get those medicines approved for use in the patient population. To bring effective treatment to 17 million people and make it less likely that even more will become ill.

You can help in the hunt, and thereby help me, my kids, and the rest of the 17-million sufferers worldwide, by supporting the WPI ...

You can help by contacting the congress if you're a US resident or contacting whatever elected officials you can wherever you are---Ask them to support XMRV research ...

You can also help by blogging. Whatever the usual topic of your blog, please consider devoting one post to this cause, helping spread solid information.

Thank you.

This post is part of XMRV Bloggerama: a day's effort to get the truth out in bulk. Details are available here, with a template for those who find it hard to blog at all, and lots of links you can include in your post.

Finally, here are links to the science on XMRV.

WPI press release, Oct 2009

Lombardi et al, Oct 2009, Science Magazine

Lo et al, Proceedings of the National Academy of Sciences, August 2010

Commentary on Lo et al, PNAS, August 2010

FAQ on XMRV testing from VIP Dx lab

In My Shoes

2010-12-12T19:33:00.000-08:00

Why don't I give them away? They’re piled in a box in my closet, gathering dust.

Tap shoes saw hard use when I was young. Later, occasionally I’d dance for my own pleasure and my kids’ amusement.

Soft dance shoes. Last time I tried to go country dancing I felt strange after just two dances---so dizzy and weak I headed home with my head throbbing, thinking, “Drat, relapsed again.” Early on I thought getting exercise should help.

Hiking boots, near-new. A year into the illness, thinking I was well I returned to work in state parks. Each day was harder. Each night I came home in tears. After one month I had to leave the job I loved.

Office shoes share crate-space with flip-flops. When not at parks, I worked writing and editing from home. Juggling home-schooling my kids with researching and grantwriting, I could even work at the beach with my laptop.

Power shoes: second-hand, but the right look for that jeans-and-pumps Hollywood meeting I never got. When my screenplay made quarter-finals in the Zoetrope Contest, I thought I might need those shoes. Turned out I was too ill to shop the script around building on the contest momentum. Now I can neither research nor write anything lengthy: words swim. I listen to audio books, I rarely blog.

Water shoes. Ahh, kayaking. A leisurely paddle upriver was a favorite way to spend our day, my kids and I, spying on swallow colonies under bridges, sneaking up on herons in tall reeds.

Running shoes. At the height of my cross-country kick I ran track laps on weekday mornings and took to the trails on weekends, working up to a comfortable 10K.

Today I can't walk a mile, and my shoes are socks. Thick socks warm toes chilled by low circulation. Bright-colored socks cheer me. Plushy thigh-highs and cozy tights for snowy days.

My kids are ill too, so triple the doctor visits, snow boots over socks. After our home was foreclosed because I could no longer work, we had to move to a rugged, isolated area where we could afford rent. Trips to the doctor are treks through snowy mountain roads, so the socks had better be warm.

The importance of socks in our lives inspired my friend Siobhan and I to create Sock It To ME/cfs. We can’t march, but our socks can march for us, in public art displays like the AIDS quilt, each sufferer represented by a personalized sock.

We announced the project and opened the website, SockIt2MEcfs.org, and socks started coming in: knit, crocheted, denim with studs, sailcloth, leather. We hope to march garlands of them through the Washington Mall and to the WHO, and festoon meetings with their bold statements of the individuality of millions of sufferers. We hope this project will help raise awareness and funds for research and patient services. We hope.

Hopes are all we have. Hopes are what really fill that box in my closet. Hanging on to those shoes shows my trust in strides being made by researchers and steps now advancing toward treatment. Hanging on to them symbolizes my expectation that I’ll be well and walking---and dancing, hiking, kayaking, and working---in my shoes again.

(This is an edited version of my submission for the "In My Shoes" contest at http://me-cfscommunity.com/ a resource for articles and networking in the ME community. Every now and then, I can write a little, straight from the heart. Editing what I wrote is very hard for me as it's nearly as hard for me to read my own words as to read someone else's. This contest's theme clicked with me. Sometimes I can write a little when I get inspired by a call to action. I rarely blog now because I can rarely write at all, but I will try to remember to copy here what I do manage to write.)

Testimony to CFSAC

2010-09-19T18:54:00.001-07:00

I can't write much these days but I do manage the occasional brief advocacy piece. Here's what I wrote for the CFSAC meeting and if I weren't so sick right now I would have had the details up here about where to write and when the meeting is but now the deadline for input is past and if you have found this blog you are probably one of those people who already know when the meeting is.

I'm not sure if there's any value in my blogging now --- if I can even manage to write --- there are others who do a better job of reporting the actual news around ME/cfs, XMRV and MLVs, the WPI, the CDC, and all. But I'd like to share my stories and they're not always awful so when I can I will blog again. Meanwhile, on we go to the letter:

To Wanda Jones, Executive Secretary of the CSFAC, Kathleen Sibelius, Francis Collins, Thomas Frieden and Elizabeth Unger:

I am very ill and you are very busy so I won't take up much of your time with my contribution to the public testimony for the upcoming CFSAC meeting.

Another reason for keeping this brief is that today is my son's 17th birthday. I want to devote what energy I can to making this as pleasant a day for him as possible. This is the 4th birthday he has been ill. Imagine spending your 14th, 15th, 16th and 17th birthdays---and all the days between---lying in bed: your entire span of high school years lost to constant pain.

There's so little I can do to provide comfort as I also am ill, unable to work and provide the comforts that a healthy parent can bring to a sick child, from pleasant distractions to decent medical care. In any case, there has been no decent medical care, no appropriate proven treatment, for people with our illness. But now at last promising treatment is at hand.

There is no time for us to wait. Every day that funding is delayed is another day I don't work. Every day wasted on redoing the same old studies, retracing the same old research steps, re-positing the same worn-out theories, is another day that my son lies in bed in intense pain.

The change has got to happen now for us and for millions like us. We need you to use your knowledge and positions now to make that change happen.

Not only is the link of ME/cfs to MLVs strong, not only has the research been confirmed, not only has the new research strengthened the initial evidence, not only has XMRV been proven susceptible to antiretroviral drugs already approved in treating HIV infection, but beyond all that people who have been able to do so have tried HAART and similar antiretroviral treatment and they have improved.

Can you imagine functioning for years and years at 40% of normal activity? Think of any action you feel responsible to take, anything you enjoy doing, anything you dream of doing, and cross it off your to-do list. Wash dishes? Take a vacation? Make a difference in your community? No, no, and no. Lie down and endure the pain.Can you imagine living like that?

If someone said that a drug already in use for other illnesses might restore you to 80% activity in mere months, would you not wish to try that drug? Or would you soberly insist that clinical trials and prescription approval be delayed until the pathological mechanism of the retrovirus was fully understood and independently confirmed in double-blinded studies at multiple research facilities and brought to publication and subjected to further debate?

Suppose it was your child lying in the next room, bravely trying not to worry you by moaning or complaining? I am sure you have both the compassion and the imagination to see the need. If I were well enough I would be standing right in front of you today making this demand on behalf of my child, myself, and all of us many millions, if that would make any difference. But you don't need us to stand in front of you. You know what we are all saying to you, and to our doctors, and to the press, and to our elected representatives.

Fund Clinical Trials Now.

Thank you for your attention to my brief appeal: I hope to give my son good news after your committee meets.

Sincerely,

Still Alive!

2010-08-23T10:22:00.000-07:00

Writing is increasingly difficult but just a quick note now. I think most of my few followers know me on Facebook but in case anyone doesn't, this is to let you know I am indeed till here, just not able to keep up with blogging.

So much news I'm too sick to write about, but the big ones right now are the opening of the WPI and the upcoming release of the Lo-Alter paper on XMRV.

Learn more at http://wpinstitute.org/ and cfscentral.com

Better Days

2010-04-15T15:20:00.000-07:00

There are better days.

Between my last post and this one, I had a ruptured ovarian cyst that nearly made me pass out, put me on Darvocet and laid me flat for most of three days.

Today, amazingly, I had some energy to spend.

I got up at 4 am, prepared and served 3 meals, washed 4 sink-fulls of dishes, put away 3 loads of laundry, wrote 2 business letters, filled out 6 medical forms and cleaned 2 catboxes, but I still can't go to the ball.

Poor Cinderella! Even the good days are catch-up days. The floors are still dirty, there are more dishes and more laundry to wash, I hoped to vacuum, I was wanting to bake something, there's snacks and dinner to fix and I promised to get some writing done for The Project.

Beyond that, there's a long to-do list, and more piles around the house---the house we moved into nearly four months ago, with boxes still piled high and furniture still not in place and the dog fence still not built, which would spare me that painful walk on bad days. Piles of paperwork unfinished. More contacts to make. I haven't gotten an answer from my disability lawyer or my doctor about medical tests. If they knew how hard it is to clear my brain to write each email or lift the phone to make each call, would they be more responsive, not force me to ask two or three times?

Yesterday was a bad day, and it was all I could do to get dressed. Walking the dogs had me nearly collapsed double on the ground, so back I went to bed. My weller kid will travel for several hours this weekend to a regional choir competition and there's no way I can accompany her. In better days I would have been one of the parent chaperones, one of the drivers, would have brought along my sicker kid. Now all we can do is wish her bon voyage and good luck.

I went to a movie once this year, and to a play once. It was all I could handle, though I rested up for days before and after. In better days I used to hike, dance, kayak, travel, volunteer, garden, so many things lost to me now. There's so much more I long to do, beyond what I just have to do for basic maintenance. Being sick, just basic maintenance is a dream.

That's life, sometimes we get sick, sometimes we stay sick for three years, or thirteen, or twenty-three. We have to let go of some things. I've only been sick three years so far. It could be worse.

But that's just it. It might get worse.

On a really good day, like today, I can get quite a bit done, but it's still not enough to catch me up.

Women with ME/CFS often see symptoms worsen with perimenopause. How can I plan for the possibility that I'll be worse? With so much undone already, how would I survive, sicker than this?

Maybe I could get help?

I'm only making it as well as I am, now, with a lot of help. This week, for example, my sister took me to an emergency doctor appointment for an acute problem. She did grocery shopping for me twice. She cooked dinner for me and her out of town guests, family from far away. When the guests came to visit me I had to be in bed for their whole visit, and they picked their way through my filthy house and while we talked they folded laundry for me.

It's hard to imagine what that visit would be if I were sicker, how my kids would survive if I were sicker, what would be left for me if I were any sicker than I am now. It's already so hard, and I have to prepare for the possibility that it will get harder still. How?

If my disability case is approved, maybe I could apply for in-home assistance, but I've already heard that there are so many budget cuts these days, it's almost impossible to get in-home assistance.

Is it pathetic that I spend part of one of my better days worrying so much? What will happen if I get sicker, if I don't get disability insurance, if my sister moves away? So many things could go wrong and to worry about them would be considered responsible, realistic, planning ahead, if there were actually anything I could do about them.

Maybe I can just avoid getting sicker, by avoiding pushing myself: more damage is caused every time I push. That is, I must somehow do even less on my better days.

a flare or relapse

2010-04-11T09:22:00.000-07:00

Aching all over, horrible feeling of pressure in head, chest pain. Want to be lying down but too achy to lie still. Looking for distraction but reading or looking at screen increases headache. Lonely, isolated, not depressed. The mountains and the sunshine and the budding trees all are still beautiful and pleasing, I have hopes for tomorrow and next week, there are a thousand things I want to be up and doing, so much to look forward to. But right now is a flare or a relapse or whatever you'd like to call it.

I take what measures I can for comfort. Hot tea, hot baths, sitting in the sun, lying down and riding out the dizzy spells or worst pain. A flare or a relapse is almost meaningless when there are no periods of wellness between, just rises and falls in the degree of pain. Days when I can wash some dishes, days when I can't.

The illness has worsened with activity, with every attempt to work, and with the two times I had to move house. I push myself to keep up with a bare minimum but the simplest paperwork waits in a pile: it hurts my head to try to read it.

My kids are ill too and it's that that gets me up out of bed. If it weren't for having to get them some tea and something to eat I don't know if I would get some for myself. I swept the kitchen yesterday but haven't made it to vacuuming or mopping in weeks. I try, and when it hurts too bad I stop, and I hope that tomorrow, or next week, I can catch up.

Today I'm hoping if I conserve my energy very carefully I'll be able to make it to town tomorrow, to take one of my kids to the neurologist. If I'm not better than this tomorrow I'll have to cancel that appointment. If I do make it to town tomorrow, I'll likely be out of commission for three or four days afterwards. That's how it goes. Save up energy, use it as needed, recover.

Because doctors are typically uninformed about this disease I do my best to inform myself and them. When I have a little brain power available, some of it has to go to this research, as I search for some way to help myself and my children. There is no cure, there are many treatment protocols, nothing helps everyone, we keep trying, we keep hoping.

Some of my energy goes to an advocacy project to help raise awareness of this disease. Being involved in some positive action helps me keep my energy and hopes up. I do believe, from all I've read, that researchers are on the verge of discovering cause and cure. It can't be much longer now. It's just a matter of keeping hope alive and budgeting energy, just a little longer.

But while I ride out one more rough time, with Duck Soup on and the sound off so it won't be quite so lonely but the movie won't hurt my head, with the computer to talk to as long as the brightness is turned down so the glare won't hurt, with the ability to type a little now, but no ability to go back and read and edit what I've written, just for now, for today and for this year and for three years now, it sucks. It really sucks and no I'm not brave. I'm just living with the bad that got dealt me. We all get some bad, and we get by somehow.

It's unfair. It's a life sentence. It deprives me of my ability to work and I loved working. It deprives my kids of the normal experiences of childhood and adolescence. I do all I can to give them some scraps of experience outside the prison of this illness but for one of them it's a big deal to get to go to school, and for the other it's a big deal to be able to sit up for a couple of hours, out of bed.

It's frustrating. Anger at the unfairness has nowhere to be constructively directed. It's microbes, a retrovirus probably, unfightable for now.

Actually there is one place that anger can be directed constructively: misinformation. Errors about the nature of the illness and the best treatment are what's the word... I need to stop this, the words are dropping and the pain increasing as I try to write... errors proliferate. They're perpetuated by doctors, who ought to know better, and by journalists and by all the people who "know somebody who used to have chronic fatigue."

Anger, frustration, loneliness and pain, all fuel what constructive work I can do, when I've got any energy at all, to increase awareness of the facts of the disease.

An engaging project calls for volunteers.

2010-03-14T09:38:00.000-07:00

It effects more Americans than AIDS, breast cancer and lung cancer put together. It causes more functional impairment than diabetes, heart failure or kidney disease. It creates a level of disability comparable to Multiple Sclerosis, chemotherapy or the final stages of AIDS. It strikes men, women and children. It costs the US $26 billion annually. It has occurred in epidemic clusters and may be caused by a transmissible retrovirus. Yet it receives inadequate funding for research, treatment and education, shunted aside by government health agencies. Doctors have nothing to offer their patients but a panoply of misdiagnoses or no diagnosis at all, and inadequate testing and treatment. Jobs, homes, marriages, friendships, the possibility of parenting, community activity, all fall by the wayside for the millions suffering from ME/CFS.

One researcher and author on this disease has pointed out:

“In the middle 1980s, families who had lost a relative to AIDS decided to create an AIDS memorial quilt. Everyone made a “block” and one day in 1987 they brought their quilt blocks to the mall in front of the U.S. capitol building in Washington. These panels covered a space larger than a football field. People stood together in huddles, weeping openly. Half a million people visited the Quilt that weekend. For AIDS patients, the quilt was a game changer.” -Hillary Johnson, author of Osler’s Web

We’re ready for a game-changer for ME/CFS: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. A group of people with ME/CFS has come up with an engaging project design that could be as effective as the AIDS quilt, but we can’t do it on our own, sick as we are. We need healthy people who care, to make it happen. For more project details and volunteer opportunities, please contact sockit2Mecfs@gmail.com.

Stage 9 Action Against ME/CFS

2010-03-01T08:09:00.000-08:00

Various models assign 5 to 7 stages to the grieving process.

They say we work through grief in stages from denial to acceptance.

I'd like to propose that a further stage, somewhere along the way (let's say stage 9, so we leave 8 open for the time being to anyone who wants to fill in a penultimate stage) (and perhaps this 9 I'm proposing isn't in fact the ultimate stage if you want to add being dead and therefore beyond caring or being in Tir Na Nog and having nicer things to think about or being in heaven and having achieved an understanding of how all the suffering fits into the plan of a god) ahem. Let us, as I say, propose a stage 9. Action.

It's beyond Acceptance. Nor is it equal to the earlier stages of Reconstruction, Working Through, Adapting to Loss. No. Action, real Stage Nine Action, means fighting back.

How do you fight back, if you've lost a loved one? People do it all the time. Make a contribution to the Alzheimer's Association, participate in a bike-a-thon for the Leukemia Society, contribute volunteer hours to the Cancer Society, join a letter-writing effort against a war via a church Service Committe, or join Mothers Against Drunk Driving. When a loved one is taken by an identifiable cause, and we've gone far enough in the grieving process, we get to work, fighting that killer. The fight may go on for the rest of our lives. That's Stage Nine Action.

It works in self-grief, too. People disabled by chronic illness have to go through stages of grief over the loss of a major part of our own lives. It can feel as if the person who we once were has died. We deny the reality of the illness, think surely we're misdiagnosed. We get angry and we ask, "Why me?" We try to bargain with everyone from doctors to gods to get our healthy lives back if we do x, y or z. We get dragged down into depression by the magnitude of our loss of activities, work and friends. We eventually reach acceptance and learn to live a different life, within the limits of the disease.

But acceptance can't be the end.

Beyond acceptance, there's action. Action to inform others. Action to increase research. Action to promote the search for a cure.

Loss and grief change us profoundly, whether we are grieving for ourselves or others. The loved ones of people with chronic and disabling diseases also suffer loss and have to go through grief. We come to the Acceptance stage with new knowledge, wisdom and strength.

These uses of adversity are not to be kept for ourselves alone. We share their great value through action.

Action may be as small as an email, a vote on an internet poll, signing a petition; but every time we take those tiny actions we take them for ourselves, for our loved ones and for the millions of strangers who may at any time be hit by the same force that brought us our own grief.

In my own case, both my children and I were hit by post-viral fatigue syndrome which in two of us developed into Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and Fibromyalgia. A small percentage of sufferers recover completely but to cling to that piece of information would be to stay in denial. There is no cure. There is no reliable treatment. There are only a vast plethora of possibilities, all requiring research.

If ME/CFS---your own or a loved one's---has brought you to grief, please consider enrolling in an email list to be notified of quick and easy actions:

http://action.phoenix-cfs.org/subscription.php

Through that link, you can enroll to receive very occasional email alerts letting you know how to help promote critical biomedical research.

Some folks are dead, others can't take action, but you and I can click a button now and then to make a little difference.

Best source for ME/CFS News, Forums and Chat

2010-02-10T12:18:00.000-08:00

I'm super sick. There's so much I'd like to share but I can't sit up at the keyboard for long enough. For now, I want to send everyone to http://forums.aboutmecfs.org/content.php for excellent and swift coverage of medical, political and social developments regarding ME/CFS. This is the best place I've found yet for information and discussion and yes, thank you Phoenix Rising, for the hope to keep going.

Felt like a slap, to me. What do you think?

2010-01-30T17:07:00.000-08:00

I just want to lay this all out. I’m not sure I heard right. I must have misunderstood, don’t you think?

I drove over two hours round trip for an appointment at the social service office in my new county. Although I am disabled with ME/CFS and Fibromyalgia, there was no way the appointment could be held at a more accessible location. The appointment required me to confirm various personal statistics, including the fact of my disability, all paperwork on which I’d been assured had already been forwarded from my old county to my new county.

I brought a huge file of papers including my copies of those confirming my disability.

The worker asked me when I had last worked and what my job title had been.

I answered that I had been working as a grant writer but due to my disabling chronic illness I was able to work less and less until, in June 2009, I could work no more.

She asked me if I could perhaps write grants for a local agency called Disabled Sports.

I reiterated that I could no longer write grants myself, but offered to refer them to my colleagues at the consulting firm for which I formerly worked.

She bristled, stating proudly that Disabled Sports was 100% volunteer run, and would never pay someone to write grants.

Okay, first spot check: she was asking me, although I am too disabled to work as a grant writer to support myself and my children, would I write grants for free? That seems to me to be what she was asking me.

Well, we got to the end of the appointment somehow: the appointment which the paperwork she mailed me had said would take one hour, and which took closer to three. Now was her final question: did I have any questions?

Yes, I would like to know, I told her, if there were any local agencies to assist disabled people with basic necessities. I cited as an example of such an agency, the Center for Independent Living in the county from which I had just come. They help disabled clients find housing, food banks, in-home assistance and such.

She told me no, there were no such agencies here or in the next county.

Can we check again, what’s going on? She wants me to work for free for an agency that would help me go skiing if I were an amputee, but there is no agency to help me find tax preparation assistance or a food bank. Yes, I really would like a food bank; the cupboards are getting close to bare.

She told me I could ask about food at churches, I could ask utility companies for special low rates for the needy, I could ask Social Security for any other services for the disabled that they might provide for my son who is already on SSI. She asked, had I changed my address with Social Security?

Yes, I told her, I had trouble trying to reach them online or by phone but I had sent a letter and was hoping that by now the address change had been processed.

She told me, “Oh, there is a local Social Security office.”

I was surprised to hear this as I thought the nearest one was nowhere close. She told me yes, they had an office in Spacetown. I live over 230 miles from Spacetown. Google says it would take me well over five hours driving one way.

I’ve thought and thought about this. I don’t like to think ill of people. It’s thirty hours later and I’m still pondering this puzzle. She’s a social worker. She must have gone into this career to help people. She must be full of empathy.

She thinks I should work for free, go ask a church for some food, drive all day to ask for help in my home, and then if I should happen to lose a leg maybe her friends will take me skiing.

Tell me I didn’t get that right, please.

Home, where the heart is.

2010-01-14T09:46:00.000-08:00

With all of our stuff that had been in storage for a year, with our two dogs and our four cats, and with help from family, friends and complete strangers, we made it into a home in time for the holidays. Thank and bless you, all who helped.

In three days it will be a month, already, since we moved in. We're still negotiating our ways between chaotic dissarray of furniture and boxes but from the first night (thanks to my sister's preparations that day) we've had hot meals, warm beds and plenty of serene surroundings to help us chill out. In fact, there was a gorgeous snowscape waiting to greet us.

I had hoped to get here and then just rest, restrestrestrestrest. But wait, if I say "rest" several times quickly, like that, it comes out sounding like "stressed stressed stressed." I'm trying to let the worries be duck's water, to let them slide off and go forward each day doing what I can and not worrying about what I can't accomplish, but there's so much to do and of course it all needs to be done right away.

Then there are the changes, losses, adaptations: coping with the move has been nearly as high stress as was the search for a home. Shortly before we moved, several different people complimented me on my bravery. What's brave? That I keep on going, day to day, despite bearing more troubles at once than the average American has to face? I wonder, first, what else there would be for me to do, day to day, but to keep on going, and second, how well would I handle the troubles of a Ugandan mother during the drought or of a Haitian mother after the earthquake. I look at my kids and know it distresses them sometimes, not to have the life that others around them appear to have, but I'm grateful they're housed and fed.

Keeping them housed and fed is an ongoing challenge, however. At every turn there's more paperwork to do. "You say you're disabled and can't hold down a job? Here: fill out these forms, and these, and these." Is this a test? If I could fill out all those forms, I'd be able to do a job.

We still haven't signed up as test subjects with Whittemore Peterson. One more element needs to be put in place: I have nothing to fill out under the doctor's information. I've tried to get us to appointments with the doctor we plan to see here in our new county, but weather and illness have prevented our going. Meanwhile, prescription coverage was denied because I haven't completed the paperwork: a maze to negotiate, to get past coverage canceled and new coverage in place. It shouldn't be so tough, but each and every thing is just that little bit more complicated by bureaucracies and bungles than I can handle.

Yes, I'm grateful that we're housed and fed, that we're alive, but I'm also aching so bad that sitting up at the computer is limited, and cognitive stuff is fogged by pain and overload. I'll try, today, to fill out at least one paper and get it in the mail. A pile of others will continue to grow.

I'm supposed to rest. I'm supposed not to stress. Each day I feel in aches and exhaustion the price I pay immediately for being unable to rest. What price will I pay, longterm?

When I came back to my blog at last after over a month, I saw that a blog I subscribe to had a new post about ME. It seems we're more likely to die from heart failure, according to a study published by the US National Institutes of Health on its site, here.

Am I brave? I'm tired. Heart failure sounds like a fast death and then a complete rest. But I want to see my child beat ME and live to a ripe old age. Having a home is one step towards Hazel's heart health, so cowardly and defeated though I may often feel, I'll push on as if I were brave, hoping I'm not pushing too hard.

The dogs and cats who come to me to cuddle right when I'm feeling most pain, my children who make me feel worthwhile when I can do something for them and who find ways to help me when I can't, my sister who checks in and offers help from grocery shopping to school rides for my well child, the family and friends whose responses to my emails let me know I'm not alone though I might see nobody but my kids for days, hope. There's always something to keep me going, brave or not.

To volunteer for XMRV Research:

2009-12-01T12:38:00.000-08:00

Here's the Whittemore Petereson Institute's online form. Fill it out if you'd like to volunteer to help out with their research on ME/CFS, Fibromyalgia and the XMRV virus.

https://www.wpinstitute.org/patient/volunteer_form.html

My son and I can't sign up to volunteer, yet, because the two kids and I haven't got a home. Everyone please keep a kind thought for us in the coming two weeks as I search for a house I can afford on my depleted income.

More news is good news.

2009-10-17T10:18:00.000-07:00

A flurry of press attention to ME/CFS has followed the news of a retroviral link. I hope for a cure, or at least a treatment, some relief, certainly more acceptance of the reality of the disease. If nothing else, the tremendous increase in coverage ought to lift the stigma.

A doctor who treats both says in this Q&A in the NY Times, that she would rather have HIV:
http://consults.blogs.nytimes.com/2009/10/15/readers-ask-a-virus-linked-to-chronic-fatigue-syndrome/

Comparisons are odious but it's true that decades of research have relieved much of the suffering and stigma of those with HIV, while we with CFS still struggle against the insistance of the ignorant that it's "all in our heads."

Meanwhile, it seems we may be far more numerous. Among the facts that fly in this Science Friday interview on NPR, we learn that there may be ten times the number of infections with XMRV worldwide as with HIV:
http://www.npr.org/templates/story/story.php?storyId=113870280

Speaking of viruses, there may be some useful information here for those with ME/CFS and/or Fibromyalgia who are considering the H1N1 vaccination. For me and my kid it's too late. We were infected by H1N1 and had a nasty case of flu on top of the usual, and our doctors, despite the fact that we're part of a "high risk" group, refused to test, but the good news is, we survived. Get more answers or at least questions from this About.com article:
http://chronicfatigue.about.com/b/2009/09/30/swine-flu-sorting-out-confusing-information-with-fibromyalgia-chronic-fatigue-syndrome.htm

I hope to write some more actual writing, soon.

More About the XMRV Virus

2009-10-09T11:23:00.000-07:00

Two excellent stories on NPR, and hope of a cure!

http://www.npr.org/templates/story/story.php?storyId=113650222

http://www.npr.org/templates/story/story.php?storyId=113613955

Additionally, a response to this news from Laura Hillenbrand, author of Seabiscuit.
http://www.npr.org/blogs/health/2009/10/seabiscuit_author_hopeful_about_chronic_fatigue_syndrome_discovery.html?ps=rs

Viral Connection

2009-10-09T09:44:00.001-07:00

Last time I linked an article revealing recent research on the genetic connection for ME/CFS. New news: a viral connection:
http://hosted.ap.org/dynamic/stories/U/US_MED_CHRONIC_FATIGUE?SITE=AP&SECTION=HOME&TEMPLATE=DEFAULT

Fibromylagia Study: It's Not All In Our Minds, It's In Our Neurons

2009-09-23T12:54:00.000-07:00

Every time I read a report of another medical study, like this article... http://in.reuters.com/article/health/idINTRE58L40T20090922 ...hope wells up and I scan, looking for news of a breakthrough in understanding the causes, and perhaps even finding a cure---hell, even a reliable treatment would be nice---for Fibromylagia or ME/Chronic Fatigue Syndrome. So far, no luck, but at least this one was a blind study, using controls, confirming identifiable neurological abnormalities common to fibromyalgia patients in far higher percentages than in the control group.

I'm linking it here, and I'll be bringing it to the attention of the doctor with the pain management group at Kaiser, because just three weeks ago yesterday, he told me there were no such studies that he knew of. This article doesn't change much, but it's a scrap I'll cherish. Now when I say that I've read that there are measurable neurological manifestations of this disease, I'll have this one more scrap of evidence.

Fibromyalgia victims, tell your doctors. Let's keep them up to date.

Herbs for CFS/ME

2009-09-20T12:44:00.000-07:00

I've just come across this list of possibly helpful herbs. Half of these, Hazel and I have already tried. If you have any experience with any of them, let me know. The full list of ten herbs is here: http://chronic-fatigue-syndrome.suite101.com/article.cfm/best_herbs_for_cfsme

The ones we spent months taking and saw no improvement from are: Astragalus, Eleuthero, Ginkgo Biloba, Ginseng, Rhodiola.

Always hoping for anything that might help.

CDC's Got Goals: 5-Year Strategic Plan

2009-09-20T12:38:00.000-07:00

I don't know what it will mean for us sufferers from CFS and ME, but the CDC has published its draft 5-year Strategic Plan for us. If anyone is able to translate from the bureaucratic, let me know what it says. On surface at least, Goal III, Milestone 4 sounds good to me: "Move CFS into the mainstream of public health concerns."

Check it out here: http://www.cdc.gov/cfs/draft_5yr_research_plan.htm

Nortriptyline Machine

2009-09-20T10:27:00.000-07:00

I'm off that stuff. Let's see how the machine runs sans Nortriptyline.

I waited and kept taking the med, hoping the NP would return my call, then went off it on my own, and finally got a hold of her by calling again and being transferred through a hospital in-house line. Turns out she had been on vacation and it took 3 days for her to catch up on her desk full of work and her meetings, but, "I got your message and it's on my list of call-backs." But, "yes," she said, "some patients experience the opposite of what the medication is supposed to do, and get more wakeful instead of drowsy." So there's a lesson or two: if the med is too weird, don't wait for the docs to call you back. Trust yourself, go off that weird med. And if the docs don't call back, keep calling them. Squeak, wheel; squeak!

I had hoped I was just going through an adjustment period and the sleep thing would even out. I was enjoying increased energy and decreased pain, but as night after night went by with 4 or 5 hours of sleep, I was less and less able to do anything productive with the energy. By day I knocked about doing scattered chores, wishing I could focus clearly on the more urgent needs piled in my paperwork inbox, and particularly on the search for housing. By night I tossed and turned, practiced every relaxation technique I could, and still lay awake with my wheels uselessly spinning. Spin, wheels; spin.

So I went off the Nortriptyline on my own initiative, after having taken it for one week. The NP wrote an Rx for Gabapentin which according to the Mayo "is sometimes helpful in reducing fibromyalgia symptoms," but its original purpose was to control seizures. Those seizure meds can be weird-and-a-half, so I'll do my research before I take it. I hope I can get enough clarity to read up on it soon. Engage, gears; engage.

After going off Nortriptyline I continued to have fragmented sleep for a few more nights, though this could have to do with my PMS, a really bad endometriosis flare-up, perhaps a touch of flu, Fibro/ME flare-up... who knows? I spent several days hitting 8's and 9's on the pain scale. Release the pressure in a steam whistle cadenza, up that scale: Do, re, mi, fa, so, la, ti, ouch.

Day 5 off Nortriptyline, and last night I got back to sleep enough times to patch together a fairly restful night. After a week with no sleep and no brains, and four days of extra pain, do I have some brain capacity available for tough tasks? I look at my in-box overflow. I think about my name on the NP's list of calls to return, and hope those other names on the list got their calls returned. I know how it is to return to work after a vacation or illness and have a pile of work waiting. And I know how it is to have only a couple of hours a day, at best, to catch up on things. Not only that. I know how it is for the sickdays to recur, recur over the course of two years, and the pile to keep piling. Always the overflowing in-box, and never caught up. All I can do, is a very little. Remember the advice of Dr. Hain. Do less, think less, eat less, poop less. Nortriptyline jacked up the pace without alleviating the inflammation. Rev up the engine without replacing the worn out gaskets and where you going to be? Side of the road.

If I'm able to pull back into traffic now, it will be in the slow lane. Pain Doc told me when he prescribed Nortriptyline, "The idea is, it will make you drowsy at night and give you more energy in the day. More energy in the day, you get more active, that gets you tired out, and you sleep at night." I'm sure it works that way for some people, but for me it was wasted fuel. No more Nortriptyline for this machine.

Just Taking a Moment to Wish and Dream

2009-09-13T13:36:00.000-07:00

Fifty Wishes for my 50th Birthday

1 World Peace
2 First World Healthcare for the Whole World
3 Spiritual Enlightenment (Will it help me accept the lack of wishes 1 and 2?)
4 A Safe, Affordable, Long Term Home for Me and My Two Children and Our Pets
5 Cures for Myalgic Encephalomyelitis/Chronic Fatigue and Fibromyalgia
6 Less Pain for Child 1 and Me (ME/Fibromyalgia) and for Child 2 (migraines)
7 More Energy. Maybe even full health returning?
8 Better management of the pain and energy we have
9 More Moments of More Clarity for my Mom (Alzheimer’s)
10 More Social, Education and Recreation Opportunities for My Children
11 The Ability to Work Again (or lacking it, Disability Insurance and No More Appeals)
12 A Family Reunion
13 Community Roots and Connections
14 A Continually Sufficient Supply of Mostly Organic Foods… Community Garden?
15 Screenplay Sales and Other Remunerations for Creative Writing
16 Good News from Family and Friends
17 Quiet Visits with Family and Friends
18 Trips to Parks and Beaches with Somebody Else Driving (or energy to drive myself)
19 Income Above Poverty Level: Don’t want Abundance but Sufficiency would be nice.
20 Help Taking the Dogs and Cats to the Vet
21 A Garden to Work In, But Not as Its Main Gardener… Community Garden again?
22 More Old Friends Getting Back in Touch
23 Enough Energy to go English and Scottish Country Dancing Now and Then
24 What the heck… Enough Health and Energy To Bellydance and Tapdance Regularly
25 A Visit From My Sweetie
26 What the heck… my sweetie moving to be near me!
27 Circumnavigation of the Mediterranean
28 Better Health, Employment, Housing and Stability for My Children’s Dad
29 Someplace to Compost… Community Garden Yet Again?
30 A Stay in Yosemite Valley (bad native Californian has never been)
31 The Ability to Take A Road Trip Across the US and Canada with my Children
32 Enough Energy and Lack of Headache to Play and Listen to More Music
33 Enough Lack of Headache & Lack of Cognitive Impairment to Enjoy Reading Again
34 Lacking #33, Access to Lots of Recorded Books and an MP3 Player To Hear Them
35 A Shopping Spree for the Basic Clothing Necessities for Self and Children
36 Clean and Affordable Transportation
37 A New Laptop
38 Returned Ability to Travel, Hike, Bicycle and Kayak
39 Some Easy Plushie Patterns
40 Fresh Rain on High Mountain Sage
41 Fresh Breeze Over California Buckeye Blossoms
42 A Sunny Spot on a Clean Floor for Yoga
43 Ability to Create Steampunk Dream Wardrobe, or a devoted tailor at my service.
44 Ftoyers, Fattoush and Lokoum
45 Oud Repair
46 Oud Lessons
47 Some Nice Soft Fat Cotton Yarn to Crochet
48 An Inlaid Wooden Backgammon Board from Lebanon
49 50 More Wishes
50 Another 50 Years Enjoying All The Above, Before an Easy and Graceful Departure

Nortriptyline, Butterbur, Feverfew, oh my.

2009-09-13T12:07:00.000-07:00

Just a quick note about herbs and meds.

A few days ago I started taking Nortryptiline, prescribed by the doctor at the pain management clinic. The first night, I had a ton of trouble getting to sleep. Odd! The med was supposed to make me drowsy, but it was sending me beyond restless to hyper. I tossed and turned, feeling jangled and agitated. After a while I slept shallowly, then woke, slept and had agitated dreams, woke, slept.

I stuck with the medicine, thinking this might just be an initial effect that would wear off. It's been five days now. Still getting less sleep, and more restless sleep, than before. On the other hand, I've also had less pain and more energy during the day. Not pain free, not normal energy. A slight but noticeable improvement. Will the sleep thing settle down? Should I go up to double the dose the second week, as scheduled? I'll be calling the doctor tomorrow to ask.

Meanwhile, a couple of days after I started the Nortriptyline, my family doctor said it would be fine for me to take too the herbs and supplements that the pediatric neurologist prescribed for Hazel. So I'm taking Feverfew, Butterbur, B2 and Magnesium as well as D and Calcium Citrate. Maybe some of my improvement is due to those supplements. It would be nice if I could get off the tricyclic stuff and use just the herbs and vites. However, it's unlikely that these slower-acting measures would already be causing noticeable improvement. On the other hand, Hazel, who is taking the supplements but not the Nortriptyline, has been complaining less often of severe pain, has been able to write and do computer programming, and has had improved appetite.

For the benefit of other ME/CFS/Fibro sufferers: Your doctors might not be aware that we tend to have high sensitivity to medicines. Always start with the lowest possible dose. Tricyclic antidepressants have been known to help some ME/CFS/Fibro patients fight the pain and insomnia. If your doctor prescribes and you decide to try, just remember, you probably will not need or tolerate the higher doses that would be prescribed for depression patients.

Feverfew and Butterbur are herbs that have been tested---so well tested that even a Kaiser Permanente doctor is allowed to suggest them---and proven helpful for sufferers of migraine and chronic headache. The hope is that these will reduce inflammation associated with ME. Depending on the length of time you've been in chronic pain, it may take a couple of months or more for the effects to be noticeable, as your brain has to lay down some new neural pathways and let some old pain-route ones close. Or at least that's what the pediatric neurologist told us.

Hang in there. That's what we're doing. And hey, drop me a comment and let me know you're reading, as Hegge, a fellow ME fighter from Sweden, did.

Chronic Pain Management Assessment

2009-09-09T03:02:00.000-07:00

I had been looking forward to this for about 6 months. Finally, yesterday, I had my appointment with the Chronic Pain team. The physical therapist, psychologist, counselor and nurse all seem like caring and well informed people, so I've still got a lot of hope, but also a little disappointment.

For one thing, I had hoped that the members of the team would be familiar with and receptive to the Canadian and Australian descriptions of ME. Instead, I received another definition of the difference between Chronic Fatigue and Fibromyalgia. More than one doctor has stated to me authoritatively that they're pretty much the same thing, or that Chronic Fatigue can feature pains as well as exhaustion so it gets confused with Fibro. This pain management doc's take on it was that Chronic Fatigue does not involve any pain whatsoever and therefor, since I'm experiencing pain, it's Fibro. He tested the classic pressure points for Fibro and sure enough I felt pain in 11 out of the 18, which he said means it is Fibromyalgia. But what if I had felt pain in only 6 or 7? Then it would not be Fibromyalgia OR Chronic Fatigue. And what about the chest pain which is my most intense and recurring pain, but is not included in those pressure points?

I appreciate his stance that the name is not important: what's important is what it's doing to me. But he also said it's not important why it's doing it. We'll be treating the symptoms, it seems, with coping measures. That's very valuable in its way. But what if the research on ME is correct and there is indeed inflammation of the brain and hypotension causing all this pain? And what if Feverfew could indeed reduce that inflammation and perhaps increased salt would be advisable for the hypotension? I hope that the team will be open to discussing these things, but at the first visit it seemed not. They asked me if I understood what my diagnosis was and why I felt pain, and when I went to the physiological roots as I understand them, which do seem to me to explain my symptoms, I was cut off. Well, they had a lot to get through, and although we had three and a half hours to work with, there was no time to spare for in-depth discussion.

I do appreciate the focus on symptoms over disease names. The intention is a more holistic approach. The team is very much devoted to working with mind-body connections and supporting whole patients to relieve pain. But if there's an explanation why I can't climb stairs without pain and dizziness we could treat causes... if... but... if... Ah, it's all ifs and buts, so why not try their way, I reason. I'll give it a fair trial. This was only the first day. I have 11 weeks of group classes ahead.

They're starting me on the same med that didn't work for Hazel. I'm not Hazel, though. Maybe Nortriptyline will work for me. As in Hazel's case, it's being prescribed for sleep disturbances. First night on it, I'm having the worst insomnia I've had in weeks. I'll give it a fair trial, however, if only to show that I'm cooperative and open to pharmaceutical options. And I'm tired. I don't want to argue, I want to cooperate and receive support. But I'm also going to ask if herbs are an option for me.

It's not that I think all herbs are better than all pharmaceuticals. Ironically, the yucky feeling I'm having tonight reminds me of the herb Valerian, which doesn't help me sleep but just makes me feel woozy and dizzy.

We're all guinea pigs. As long as this condition is unexplained and incurable we sufferers are the lab animals testing the latest theories. They say Nortriptyline works for many sufferers of ME/CFS and Fibromyalgia. I'll keep you posted on my reactions to the drug.

I'd love to be going to the acupuncture clinic that helped me feel so well a little over a year ago. I'd love to be seen by a Chinese herbalist, or a really good homeopath. I'd love to explore any number of alternatives, but this pain management clinic is the alternative available to me at this time, free, and within reasonable travel distance. If the effort ends up being more exhausting than relieving, I can drop it. And I'd love for the Nortriptyline to work, after all.

Miracles: may they become commonplace.

2009-09-07T09:49:00.000-07:00

It may not last, but wouldn't it be nice if the end of August turns out, in future retrospect, to have been a breakthrough point? Of course, last night's adventure, Dog Meets Skunk, could indicate a reversal. But let us not think of that at present. Let us remember the happy ending of August.

First miracle: I started seeing Dr. Tractor, whose PhD in psychology doesn't prevent her recognizing the physical and practical roots of psychological distress. Aware that I need to find immediate shelter for myself and two kids, that my county caseworker is out of the picture with her own long illness (may she be well soon) and that I was getting no assistance from any government or private agency whose mission it was to assist the homeless and disabled, Dr. Tractor rolled up her sleeves, or rolled out on her treads, and dug in. The first tangible result is that she snagged me an application for a disabled bus pass. Maybe not overwhelmingly difficult, but a solid practical help with something I hadn't been able to do, simple though it might seem. And that bus pass application is symbolic to me of something more: there's now someone in my life who is willing to make it her job to help me negotiate the piles of paperwork and tangles of agencies. Wise Dr. Tractor realizes that homelessness causes stress which exacerbates illness whereupon pain increases isolation and hence depression and disability. She's stepping in and helping break that cycle. Talk therapy is all very well, but I'm really appreciating less talk and more action.

Second miracle: Butterfly's generosity. She's a joy just to talk to: a slight and sweet-spoken elder with her white hair in a wispy bun, fairytale style, atop her head, and her knowledge of every native moth and butterfly and their food plants, and those plants' neighbors, and her caring worldview extending to farthest wars and closest local action. She'll almost always only get gas at one station though it's miles away, waiting to gas up until she's heading that direction, because she supports their efforts to minimize the environmental impacts of petrol pumping. That's the sort of committed person she is. She rescues caterpillars from unstable environments and brings them home to her garden full of native plants, to metamorphose there in safety, then releases them in safe habitat. Her dashboard is covered with tokens of the names of people who have been unjustly disappeared in the war on terrism, lest they be forgotten. And her kindness extended to me. Butterfly loaned me her car so that Hazel and I could travel across the bay to Miracle Three.

Third miracle: the new pediatric neurologist, Dr. Unicorn, another doctor who really gets it. She's the first specialist I've taken Hazel to who had actually discussed her case with her primary care pediatrician prior to the appointment, and who made an appointment for a follow-up visit. That alone was encouraging. Besides that, she understood that Hazel had made a huge effort just to come to the city and be upright and talking. And more, she offered an herbal option.

We'd had a lot of hope for Nortriptyline when it was first prescribed by a headache specialist, but the first week's very slight improvement had been followed by the second week's violent illness in reaction to a miniscule increase of dosage. Hazel was throwing up, which is such a rare occurrence for her, I think she was a tiny kid when last she puked. We had taken Hazel back down to the first week's dose level and continued for 11 more weeks---a total 13 weeks on Nortriptyline---but there was no further improvement. Dr. Unicorn was astonished that the headache specialist hadn't suggested Feverfew and Butterbur.

Evidently Feverfew and Butterbur, with their lovely descriptive old English names, are both proven effective in countering headaches and inflammation. Hazel's continuous headaches won't be stopped by these herbs overnight. Two and a half years of illness have worn their paths in Hazel's brain. But gradually Feverfew and Butterbur can re-route the circuitry away from pain, and Dr. Unicorn believes that two months, perhaps three, may be enough to cause considerable difference.

Despite her fancifully magical name, this neurologist isn't all herbs and potions, however. She also prescribed Midrin for Hazel to try when next she has pain so acute and intense that she can't sleep or eat. It's good to know the big guns are there if we need to draw them, but it's even better to know that herbs capable of actually solving the root problem, without the panoply of side-effects associated with prescription options, are even now working... I picture them like a trail-mending crew in a park, blocking off the paths that lead to erosion and clearing better routes. Dr. Unicorn doesn't know of a specialist in Chronic Fatigue within the Kaiser system, but she said she will look into it, and I believe that if there are any, she'll find them.

Miracle Four: the car. For this I must thank the combined efforts of my sister Bliss and our mom, my nephew Bug, my younger child Holly, a wonderful volunteer from St. Vincent de Paul named Will, and an unknown auto donor. The unknown person donated a car to St. Vincent de Paul, which checked it out thoroughly, had all necessary repairs and maintenance done, put new tires on it and placed it in a lot with perhaps a dozen other such donated and rehabbed vehicles. There, Will met me, Bliss, Bug and Holly and waited while we checked out the vehicles and narrowed down to one prospect. Happily, the one car that passed Bug's mechanical inspection and fit our budget as well, also passed a test drive with flying colors and purring engine.

It was one of the hottest days of the year. I was terribly ill, and could barely see the cars, much less negotiate to purchase one. Holly sat in the shade with me and kept my spirits up while Bug completed further mechanical checks and Bliss handled the financial negotiations. With money donated by my mom, we bought Terwilliger Toyota at a very fair price slightly under Blue Book. Another hour, this time in air-conditioned comfort at the nearby offices of AAA, and the car was insured and registered. Bliss took care of all of this while Holly and I waited in comfy chairs, Bug and Holly helping out by running messages from Bliss to me and back when the helpful people at the window needed my driver's license and such. It was a long and exhausting afternoon for a person with ME, as well as for every person with me, but so productive.

I downed a lot of caffeine and analgesics to scrape myself up and prop myself in the driver's seat, but Holly and I made it home while Bug and Bliss went on to parts Southeast. And we made it home with Our Car. After a couple of months of having to beg rides (thank you Butterfly and Bette and everyone else who helped out with a lift here or there) and tote groceries on and off a rattling bus, it's a tremendous relief to have wheels again. I had been forced by lack of transportation to cancel so many medical appointments, doctor visits are now what early September is all about. Doctor visits and, as often as possible, Bette's wonderful gentle yoga classes. I'm so happy to be able to travel to those appointments.

Miracle Five: after the car purchase had drained all available resources, we were down to bare cupboards and no way to pay Flute back for fronting eight months of utilities, not to mention providing the temporary home where the utilities are hooked up. The strain on Flute's economy was placing a strain on a long and valued friendship. We have to find a permanent home and move the heck out of here, and Flute has given me until December 1st to do so, but I had no idea where I would get the money to pay at least a part of what we owe him, or how I would afford once again a moving truck and hired help. To solve this problem, Miracle Five came from Burning Mama.

She was important to me back in film school but we had lost touch. We found each other again via Facebook. She and her art had been to Burning Man, she had a transatlantic life with family here in the Bay Area and back in Europe, she had a little tyke of her own and still the energy to create, to kayak, to do the things I used to love. I was so happy for her and, of course, jealous, but not insanely jealous. I was delighted to be reconnected and hoped she would come for tea and talk when in the neighborhood for kayaking. Life is busy, tea didn't happen, but between travelings and projects Burning Mama took time to think of me. She read my writing and told me to keep it up, and coming from her that meant a lot, since she herself is a writer I greatly admire. I was so sorry to hear that she would be uprooting from the Bay Area and moving with her man and her boy to Europe, but before she left, surely needing all the resources she could muster to finance her relocation, she dropped me a line to offer me a loan. Pride made me put it off for a couple more months, but I caved in and kindly gave her the opportunity to indulge her generosity. No interest, no due date, just someday repay: the check arrived the day after every cent left my account to buy the car. And on I went to Miracle Six.

Miracle Six: yet another psychologist who Gets It! Those of you who read a previous installment entitled "Alas in Wonderland" will remember the culmination of the weirds, a psychological test for which the state paid oodles of money to learn that I am able to fold a piece of paper (an ability which I had never contested). Well, if it was hard on me to have to travel a couple of hours round trip to meet some newly-breeched psychologist who would smirkingly ask me inane questions, how much worse I expected it would be for poor Hazel who can barely get out of bed and stand up for five minutes.

The miracle is, Dr. Sam Hain, the psychologist with whom Hazel's evaluation was scheduled, turned out to be an experience, empathetic, understanding professional. Like Dr. Unicorn, he respected Hazel's huge effort to make it to the appointment. He has known chronic illness himself and truly understands what it is to pass years of youth in crippling pain. Dr. Hain managed to reach Hazel through her pain and exhaustion and not only encourage her to talk, but make her laugh out loud. The tests he ran were intriguing logic problems as well as some vocabulary and math: no paper folding. They actually revealed what sort of material was still easy for Hazel and what types of thought bring her up to a stand. That alone would have made our trip worthwhile.

More, Dr. Hain's approach completely acknowledged and validated Hazel's struggle with this enormous burden. None of the barking of "sit up straight, go for a walk, do some chores," with which other doctors have insulted this severely ill child. Dr. Hain discussed the physical processes, the brain inflammation and the blood pressure drops, that keep Hazel weak and in pain, as well as the psychological effects of over two years of living like a mushroom, as he put it, lying quietly in the dark.

Dr. Hain asked me what sort of kids were around us, for social contacts for Hazel---just a lot of future farmers roaring around on quads? Nobody who could share interests with an unconventional kid like Hazel? I rose to defend our area ---oh, he was good at baiting! --- and mentioned for example the kid among my acquaintance here who had recently completed a brilliant artistic achievement. And Hain snapped back at me sarcastically, "Great. So you want her to socialize with a bunch of overachievers?" What Hazel needed, Hain suggested, was friends who were also mushrooms.

This is no time to be type A, Dr. Hain reminded us. This is no time to push, to try, to do. This is the time to do less. "Think less, do less, eat less, breathe less, poop less." Such a gift: accept where we are. Further, he applauded Hazel's bravery. Few other doctors have acknowledged what a huge effort Hazel is making just to survive. I've tried to tell Hazel myself, when she laments being a burden to me and wishes she could help me, that she is in fact helping me. I tell her that she's doing what she needs to be doing, resting. I tell her that's her job.

Dr. Hain recognized too that the rest we're getting is not real rest: that relief from stress can't come from merely lying down, while the longer you lie still the more things you are aware of that you're not getting done, and the more the unmeetable demands of the world distress you. He acknowledged that what we really need may not be possible. Real rest, a couple of years at least of knowing there's no need to fear, of knowing with a certainty that everything will be alright. I kept silent, turning an oblique cheek, to hide from Hazel the tears pouring down my cheeks. Acknowledgement of someone else's burden is a wonderful thing, and it hurt me so that I can't do anything to reassure Hazel and relieve her burden of worry and fear.

Dr. Hain went further. He told Hazel that she's brave. He repeated the compliment several times: "You are so brave." And it's so true. My beautiful elder daughter hasn't complained when her younger sister has been able to take classes at the junior college, act in summer stock, go traveling, while Hazel lay as quiet as possible riding the tides of pain. She hasn't raged at the loss of her teen years, though perhaps she should. She hasn't thank goodness tried to end the pain with suicide or resorted to drugs. She is so very, very brave and I'm so proud of her, and I glowed to hear someone else recognize my child's achievement.

If the miracles keep on coming, maybe they'll create a way for Hazel to become a regular patient of Dr. Hain's. As it is, out MediCal insurance won't cover that and we have no money to pay out of pocket, so it can't happen now, but it is my hope that someday Dr. Hain can help Hazel some more. For now, the lack of paperfolding, the advice to be touched more and to get annoyed more, and above all the understanding and appreciation that he gave Hazel in that one visit make Dr. Hain a miracle-worker in my book. Well, okay, in my blog.

Miracle Seven? No, the gods deserved a day of rest. That's all for now, and plenty. Perhaps there were some more miracles in the Big World with all of its horrors and heartaches. I hope so. And come to think of it, maybe there was in fact a seventh miracle for me, in the form of a sort of sabbath. The six miracles restored me. They gave me blessed rest from struggle, and the wondrous sensation of being supported. I've emerged with that wonder of illogic, hope. I feel certain that somehow, sometime soon, what we really need will come to us. Some more challenges and recreational activities for Holly, so she doesn't lose her teens stuffed in a house with two invalids. Some mushroom friends for Hazel, and the ability to rest a real unworried rest. For us all, a home, permanent and affordable, so that we don't wake in the wee hours wondering where we'll next rest our heads. Maybe over the long term, with enough stressors removed and enough real rest, maybe, maybe, healing.

If you have your health, breathe deep and feel the miracle of it. If you haven't got health, take hope. We're going to be all right, all of us. I don't know it for a certainty, but in good moments I have a sneaking suspicion. Everything will be alright, even when Dog Meets Skunk. And now, I'm off to prepare another tomato bath, so I can get back to yoga breathing. Namaste.

Wonderful Week

2009-09-04T19:30:00.001-07:00

Soon as I can, I'll post about my good week. Right now I'm still recovering from it.

Visualize Clear Vision

2009-08-26T16:34:00.000-07:00

We need a car and a place to live, my kids and I, and preferably not a car that's a place to live.

My magical mathematical friend, Bette, reminded me to visualize. She suggested I blog my vision, putting it out there to see if the right thing comes in response.

My problem is, I can't see clearly what it is we need.

Maybe we actually should nest two birds on one twig, as the kids' Daddyman nonviolently resets the metaphor. Maybe we should have a vehicle to live in. A good sized motorhome, with low gas mileage, could get us by until things improve.

Except that we are too ill to drive from campsite to campsite as we reach the limit in each. We are too ill to travel and actually enjoy a nomadic life. Besides, who knows when or even if our health and finances will improve?

A car and a home, then.

The car isn't too tough a vision. Low gas mileage, roomy for kids 6' tall and up, with a roof rack to transport a bike or kayak for the kid who is still well enough to peddle and paddle. In reasonably good shape, with okay tires and no major repairs expected any time soon. A stereo would be nice. AC optional. Must be automatic transmission because of my bad knee. Something decent, I'm wishing for: not rusty and ready to fall apart.

Our needs for living space are harder to define. With two teens, it would be good to have 3 bedrooms, but we could squeeze into two. With four cats and two dogs it would be best to have a house, not an apartment. But how can I make any stipulations beyond a prayer that the cockroaches not be piled above knee-high, with only $300 to budget for rent?

It's a ridiculous amount to offer anybody, but it's nearly half of my current income. Subsidized housing (site-specific section 8, for those with a handle on the jargon) would charge me one third of my monthly income. We'll need something left over to pay minimal bills and buy food and clothing.

How can I visualize an ideal situation, within such narrow restrictions? I know that I need to try, but so many variables just confuse me. In the country? That's good for our health. We get more ill if exposed to lots of noise and bad air. In the city? That's good for convenient access to doctors and shopping. Ride a country bus and carry heavy groceries up a country hill and you can find yourself idealizing a convenient life near a mall.

Can we be close to some of our old friends or new friends? Do we have to move to somewhere completely unfamiliar? What if we have to leave the state?

There's what we like, what we prefer, what we need, what makes sense, and they're not always the same.

Once we get a place, I'll confront the question of how to actually move there with no energy and no money, with nothing but aches and hopes. But the where is first. The how will have to wait.

I'll try again to do some visualizing when I'm a little less stressed. For now, I'm trying not to panic. I'm visualizing visualizing.

You Don't Look Sick

2009-08-21T12:06:00.000-07:00

No, I don't look sick.

When you see me, I don't look so bad. So is anything really the matter with me?

First of all, "when you see me," is an important qualification. You only see me when I am able to get out.

The three out of four days, roughly, when I'm too ill to go out, you won't be seeing me. I probably won't get out of my pajamas some of those days, might not take a bath, might not get out of bed on the worst days. So many days I plan a two-mile bus trip to get groceries, only to have to put it off, too sick to do the walking, riding, carrying, and even the small amount of thinking and planning involved in a grocery run.

Second, even when you do see me, I'm not feeling as well as I look.

How well do I look? If you knew me before I got sick you might notice the lack of spring in my step, the absence of my usual bouyancy, and the stress of pain overlaying the former looks of humor and caring in my eyes.

If you don't know me so well or look so closely the pain might not be at all visible, but it's there, just like your pain is there when you have the flu.

Remember the last time you woke up horribly sick, on a day when you had something important to do? You probably got up anyway, ate, took a shower, got dressed, brushed teeth, hoping all the while that you would feel better once you were ready.

If you were really sick, you had to admit defeat, cancel your plans and collapse in bed, one huge ache.

What if you woke feeling that way every single day?

What if this continued for over two years?

That's where I am right now. I can't stay in bed every day. I have to go on taking care of bills and cooking, laundry and shopping, doing what school things I can with my kids, finding a way to clothe and house and feed us all. Nobody is taking care of any of that for me.

When you see me, I'm making a huge effort to be up on my feet and out in the world. Every minute, I'm wanting to go home and lie down. No matter what medicine I try, my head is aching, my whole body aches as if I have the flu, and sharp pain presses my chest. My mind is slowed down too, just like when you're so sick with flu you can't think clearly.

I don't look sick, but I can't do my left-brained writing work anymore. I kept trying until I reached the point where it was a huge effort to squeeze out four hours per week and I had to choke back pride and tears as I told my last client I couldn't take on another job.

I don't look sick, but when I have had to do some manual labor---just carrying moving boxes, or whacking weeds, or even toting those grocery bags up the hill from the bus stop---I stop in the middle often, wincing in pain, I push on through and do what has to be done, and I pay for it with several days of mind-numbing pain and exhaustion.

On those days, those ones where you don't see me, I hit moments when all I can do is cry.

Alas in Wonderland

2009-08-18T19:01:00.000-07:00

There have been a lot of surreal moments in this little journey, but few as strange as today.

True, it was very strange that back when my home was foreclosed, despite my being in constant phone and mail contact with Queen of Hearts Mortgage, the Queen sent a messenger to my door with a thin slip of paper. It looked scissored from a xeroxed sheet. Maybe fifty two such slips could be made from one standard piece of copy paper. On it were the Queen of Hearts Mortgage Company's phone number and a command that I contact the Queen immediately. Curious, as I was already in contact with her, but it was curiouser that the phone number printed there was incorrect. Curiouser and curiouser, they did this not once but twice. A messenger again drove for at least an hour to reach me, handed me the thin scrap, and again the number was wrong.

That was weird, yes, but maybe it was a weirder shade of surreal to drive for six miles behind the White Knight, honking my fool horn off, trying to let him know that the moving truck he was driving had its rear roll-up door wide open. It was already clear that Queen of Hearts Mortgage, which lost its head not long afterward, was gardening with painted flowers. But I had credited the White Knight with at least the presence of mind to pull over when a following driver honked for ten minutes while flashing their headlights.

Then again, I should cut a lot of slack for the poor White Knight, who after all had spent a couple of grueling days helping with the packing of the cluttered three-bedroom house we once shared, and had slept there on the floor while I went home to our two kids. We three had already moved into the house-sitting gig where the three of us still sit, looking for another house. I'll hand it to the White Knight, he knocked himself out---well, yeah, clearly he had knocked himself silly---taking time away from his own homeless and underemployed shambles to help pack and move our former mutual shambles. He had more excuse for an absence of mind than had the comfortably overemployed Queen of Hearts.

Less clear was the reason for the lack of clarity in the Mock Turtle, a psychologist I saw for one session, and the Gryphon, her office manager who had let me see the Mock Turtle before realizing my insurance didn't cover her help.

The Mock Turtle told me that what I needed was to practice Mindfulness. She knew some books which would help. I explained that while I can still write sometimes, a little, reading was really hard for me.

Perhaps the Mock Turtle's mind was too full of her own sorrows to hear mine? She sent me off with a xeroxed copy of a complete book on Mindfulness. Also, she asked for my snail mail address so as to recommend another book, as email was to her as slippery as a lobster in a quadrille.

A few days later I got some mail from the Mock Turtle. The envelope was stuffed tight as a whiting with a sheaf of 19 sheets of paper, with a yellow sticky on top. The sticky told me the title and author of this other recommendation, plus expressions of pleasure to have met me etc. That was really all the Mock Turtle needed to send, had I been in any shape to read a book. But the top five pages of the sheaf turned out to be the first five of eleven pages on Amazon related to the book. She had printed it all out for me. I have the title and ISBN number, editorial reviews and product details, all right here at my fingertips and nearly as convenient as the internet. That's okay, I can deal with a paperful system. But what were the additional 14 sheets? Blank paper.

I was not devastated when The Gryphon discovered that based on my insurance plan I couldn't be seen by the Mock Turtle after all. I felt I could learn my mindfulness from someone whose mind was not quite so full. I accepted the kind wishes along with her gift of 20 pieces of paper and 90 cents postage, and I moved on, to see what else Wonderland might have to offer in the way of astonishing people.

At Wonderland Affordable Housing they told me that they no longer do housing. "Why are we still listed in the pamphlet you were given?" they asked in astonishment. I couldn't answer. They referred me on to Looking Glass Housing.

When I phoned them, however, Looking Glass asked, "Why did Wonderland send you to us? They know we've never done housing. But call White Rabbit Homeless Services and they will help you."

The White Rabbit did her best to help, going through all her listings. "Have you dropped in on Wonderland? Yes? Well, then, you might look into Looking Glass."

I told her again to whom I had already spoken, and reiterated my situation in brief: no home, nearly no income, two children, and myself and one of the children disabled, with no car to live in.

"Tut tut, that is a shame," the White Rabbit fussed. "Well you know, you do have somewhere to stay, for now, that's the trouble. It's much harder to get help unless you're already on the street. If you stay in a campsite for a few months, you'll probably get something."

Yes, she told me that my sick self and sick child and well child should all three pack up our nonexistent car and go camping. There are affordable housing complexes. I can see the garden, but I can't get into the garden.

Still, all of these Cheshires mean well. Their paws point Here and There at once, but those smiles, unfading and bizarrely broad, are nevertheless sincere. Consider the kind people who I contacted when I needed to find something labeled Eat Me.

When at my wits end to get groceries up the hill without a car and still find energy to cook the damn things, I phoned Hatters and Hares For the Hungry. They told me that yes, they did indeed deliver nutritious meals to the chronically ill. Was I dying? No? Ah, too bad. They could only deliver nutritious meals to people who were actually dying.

This condition, Myalgic Encephalomyelitis, requires adjustment to a new reality. Today I have moved on from that particular problem with a resolution that I will not overtax my energy by expecting to shop, cook and eat all in one day. Monday is laundry, Tuesday is shopping, Wednesday is cooking and Thursday is eating. On Friday I feed the pets, on Saturday I sweep, and on Sunday I take out the garbage. All very reasonable. A mindful adjustment to my new reality.

Today however, I found myself back in Wonderland.

I have applied to the Red King for Disability Benefits. These Flamingo Benefits for Disability, from the Red King will, if awarded, exactly cancel out the Hedgehog Benefits for Poverty which I am already paid by the White Queen, so I will if approved by the Red King have a net gain of one square forward, one square back.

Today, the Red King sent me for a psychological assessment with a Ms. Dumpty.
The Red King spent over $150 on the taxicab alone, to get me there, plus whatever he pays Humpty Dumpty. The goal, it seems, was to find out if I am aware of very general reality and can follow extremely simple instructions.

The first part of the test consisted of questions like, "What floor of the building are we on?" I could not resist a glance toward the window as I answered that it was a one-storey building. Ms. Dumpty made note and asked, "Who is President?"

The second half required me to respond to such commands as, "Write a sentence," and, "Fold the paper in half and put it in your lap." I did these things.

I could probably tell you who the president was and draw two linked pentagons even if I had eaten from the wrong side of the mushroom. If this is all that is required to be found capable of gainful employment, and such trifles as my pain and exhaustion don't matter, then I'm afraid my application for Flamingo Benefits for the Disabled will be denied. Perhaps, however, other measures of my fitness will be taken into consideration. If I am left sitting on the wall for much longer, I will surely crack.

Probably the most revealing portion of today's exam was my blood pressure test, solidly grounded in the digital readout of a sphygmomanometer from this side of the looking glass. My blood pressure was something like 96 over 63. I probably need more pepper.

The nurse thought that couldn't be right so she spoke severely, beat me a bit, poured pepper everywhere, and retook my blood pressure. It was lower still: around 93 over 61. She peered at me. "Can the poor thing be alive?"

This unusually low blood pressure is quite probably related to Myalgic Encephalomyelitis, as it's described in the Canadian definition. I've always had fairly low blood pressure but this seems ridiculous. Couldn't we arrange for a tilt table test? And wouldn't this make it fairly clear that what we're dealing with, though it does have the psychological impacts of any chronic and debilitating illness, is a clearly defined physical disability?

Maybe this will all make more sense to me, when I become a Queen, or a pig.

Reliable Transportation

2009-08-14T08:59:00.000-07:00

If you expect to be disabled by chronic illness, particularly if you have a dependent who will be similarly disabled, plan to maintain reliable transportation. I cannot overstress the importance of this.

A couple of years before we got myalgic encephalomyelitis, I bought a lovely Subaru Forester. Its convenient size for the family, fuel economy and good handling on the winding and sometimes slippery backroads in our rural area all made it a great choice. It was used but in excellent condition and still under warranty. I made the monthly payments on this practical vehicle, kept up its scheduled maintenance, kept it equipped with good tires, and kept registration and insurance current and, against the arising of some unforeseen problem, I paid auto club dues so towing would be a simple and relatively carefree arrangement. In short, I was a perfectly responsible vehicle owner.

When I got sick, inability to work and earn conspired with the overwhelming onslaught of related troubles and all together they made it gradually and at first imperceptibly harder to remain so perfectly responsible. Late payments, delayed maintenance, delinquent registration renewal fees all shuffled in with the paperwork problem pile, to be caught as caught could when each day I made valiant attempts to meet normal and additional responsibilities through the ever-present cloud of pain and exhaustion.

By the time the upkeep of that car was clearly too much for me, I was too sick and overwhelmed to know what to do about it. I tried asking family members, friends, and financial advice professionals associated with charitable agencies. I explained my problem to the bank that held my car loan. Should I sell the car? Could someone take over payments? Should I trade it in? In my illness, when clear thought on what to make for lunch can sometimes overwhelm me, these questions were an enormous challenge. Before I could muddle through to an answer, my car was repossessed.

All I knew was that I needed a car. The hour’s drive to the clinic where we had our regular medical appointments, the far-flung and inconveniently located psychologists and dentists with whom I was supposed to arrange additional health care, even the five minutes’ run to town for groceries all made it necessary to keep a private vehicle. Life in a larger town, along major public transportation routes, would have been different. I keep that in mind as I search for the affordable housing that isn’t available.

(Of course, in a city my insomniac but otherwise well child couldn’t take the night time walks that help her battle her migraines and sleeplessness, so back to wanting a rural home and a reliable car. The benefits of clean air and a caring community increase the wish to remain here, not that beggars are allowed to choose. I’d accept any place we could call our own, anywhere.)

In any case, for now I’m here, and here I face the challenge of hauling a bedridden child to his feet and dragging him through a grueling six hours round trip on jouncing, rumbling buses with his ever present pain—and I mean jouncing, hitting every pothole hard—to make it to one appointment being required of us by the Social Security Administration in order to determine whether we are, in fact, disabled.

There is a solution in the works, thanks to my sister who will help me buy a car, and thanks to St. Vincent de Paul’s Society which sells inexpensive but reliable cars. However, this solution is still some weeks away, it seems. Meanwhile, I get the groceries by bus. The last time, carrying grocery bags up the hill from the bus stop wiped me and my daughter out so badly that even she who I repeat does not have ME was sick for two days afterwards and I went to bed that night in tears, the pain about as bad as it ever has been. I need to go grocery shopping again today and maybe the reason I'm writing this is to help me work up the nerve to phone and beg someone for a ride. I wait to make dental and mental appointments, and pray that the planned car-buying will happen soon enough to get me and my sick kid to our next appointments that can’t be put off.

So you see, it is simply impractical and the extreme of bad planning to be chronically ill, in poverty and carless in a rural area. I do hope all of you will take my advice and plan your lives—or the loss of the lives you knew—with better care.

Some Ways To Help Sufferers From Chronic Pain

2009-07-21T07:06:00.000-07:00

What We Need

What do sufferers from chronic pain need? There’s not a drug that takes it away. We need a cure, yes. We might be aided by therapies of various kinds, yes. But the pain goes on and life would be impossible with the pain, without some support from others. I’ve identified what I think are the basics, and some ways that you can help.

Friends:

It’s tough to make new friends or keep the old when we have almost no energy to put into the relationships: when we’re in too much pain, or too exhausted by pain, to go out and participate in social activities. We might be able to get some friends to come visit us, once or twice, but friendships fall off when there’s no reciprocation. As weeks and months go by without us returning their visits, our friends stop coming by.

Even when we are able to be seen, we’re not very attractive. Our energy is dulled, our sparkle is dampened or utterly erased by ongoing illness. The difference in the way people receive us is profound. With faces drawn and eyes full of stress, when we are able to make it out into the world we meet far, far fewer smiles than back in the days before chronic pain, when we were able to present ourselves with some verve.

I don’t know of a solution. Get by with fewer friends, savor and treasure and wring every last drop of appreciation from each small human contact, cherish memories and hopes? Beg and plead?

You can help by being steadfast friends. Remember us as we were, accept us as we are, and be persistent in contacting us. Don’t let us become isolated. Find ways we can contribute so we don’t feel that the relationship is all take, on our side, and no give. Let us know that we’re still a valued part of your lives.

Favors:

Some of the difficulty of keeping friends and family in touch could arise from the vast number of favors we need, but we need them and we are placed in the very uncomfortable position of having to ask for them, or let our lives fall apart around us. Some of us may qualify for in-home helpers but the funding for those programs is limited, so we may get perhaps one grocery run per week, OR one load of laundry and dishes, OR a meal cooked, but not all of the above. Even if we had help with all of these things there would be more: a hand with sorting through and understanding and paying or sometimes questioning the bills, help washing the car if we’re so fortunate as to still have one, a trip to the library, a ride to the doctor, some heavy things put into or taken out of storage… so many needs arise, constantly, and to have to ask again and again for help would embarrass a saint, so we bumble through, make do, or often do without.

You can help by offering help. Know that at any moment there’s a long list of favors we need, and some of them are very small. You could pick up our mail or take a check to the bank for us, and that small favor could save us the hours of increased pain if we’d had to struggle through that small errand for ourselves. Sometimes, we might not realize that we need something, or we might be too embarrassed to ask, so if you perceive a need, let us know that you can help. Or make frequent and open-ended offers: not, “is there anything you need help with?” because there always is. “What do you need help with today?” Please ask.

Distraction:

It comes down to brain chemicals: the strongest cure for pain is pleasure. When our brains are busy experiencing pleasure, we experience less pain. We are strengthened to go on by every moment of pleasure.

Alas, we’ve lost a lot of our sources of pleasure. The hike or bike ride we used to take may be beyond our abilities now. Dancing or playing a musical instrument, even picking up a novel and getting lost in its pages, can be impossible. But we need to find every possible source of pleasure and make time for it, giving it the very highest priority. Without some relief from pain we can’t go on.

You can help by dropping off some movies or books on tape, calling with a funny story, emailing some photos of your baby niece with mashed peas all over her face. Any little thing that might bring a moment or a couple of hours of smiles with minimal effort can help enormously. Don’t be put off if we’re not up for it this time. For some of us, going to a movie would be too exhausting, and for others, or at other times, it would be just the ticket. Try again another time, try another thing, help us find out what we’re able to enjoy and help us get our fixes of it.

Rest:

Whether through prayer or meditation, the comfort of a companion animal, soothing music or environmental sounds or complete quiet, we need to find our way daily, and some days many times in one day, to a point of complete rest. Pain may be waking us multiple times each night. Even if we’re getting good sleep, pain wears us down throughout the day. The smallest activity is a huge effort. We need ways and places to rest.

These can be easy enough to arrange at home, but very tough when we’re out and about. If we have cars, they provide us a place of privacy and shelter where we can tilt back a seat and take a nap or just let go to our tears or our chants or our prayers. If we’re reliant on public transportation it’s tougher. I have sat in a quiet corner of the library to cry when I couldn’t make it another step of my way to the grocery store. I’m reminded of the days when I had an infant in tow and needed a quiet place to nurse. A park bench, a nook in a hotel lobby, a bus shelter? Places where we can find a safe and sheltered spot just to sit are all too few.

You can help, again, as above, by finding out what works for us and helping provide it. Maybe you can share a meditation CD, or some comforting restorative yoga postures, perhaps even an occasional gentle and relaxing massage. Perhaps if we rely on companion animals to calm and comfort us you can help with their trips to the vet, their grooming or their walks. You can be active in advocating for public places of rest. Spend a day in your community being aware of the resources. Where would you go if you absolutely had to have a place to sit down, right this minute? What if it were raining, or night? If it’s on our route, maybe you can make your home available and make it clear that we don’t have to be up for a social visit but can just stop in to sit down and rest when we need to.

Hope:

I don’t know where it comes from. It’s not based on anything tangible in the present reality. This disease could go on until I die, and my living circumstances may never become easier. I may not find a home for myself and my children that I can afford and maintain with what little funds come to me through public assistance, but I have to hope. I have no choice. There are times when illness makes me feel like such a complete failure, that I’m sure my children would be better off without me: if I were dead someone would have to step in and care for them and they’d be almost certain to do a better job than I’m able to do. Yes, I do get that hopeless.

But I pull out of it, and I guess the reason is love. There’s still enough rational thought left to me even in the darkest moments, to recognize that suicide would terribly hurt those I love, and the thought of their pain is unbearable. So for those I love I cling to hope and keep going, knowing things could get worse, but imagining that they might just get better.

You can help by being available in the bleak times when hope deserts us. Maybe there are inspirational words that have helped you through exhaustion and despair, that you can share, and if you can offer them without pressure they could be welcome supports. Maybe there will be a moment when a squeeze of your hand will pull us through, or your message on the answering machine, even though we’re not able to pick up the phone just then, will remind us that somebody cares. We might cry on your shoulder if it’s available, or we might not cry on it but be made stronger just knowing that it’s there. Maybe there’s a little talisman you can give: a lucky coin to keep in our wallet or a pretty hanky to cry on: some silly thing can help remind us that we’re not abandoned. Remind us of love.

Acceptance:

We will fail you. Just don’t blame us. We became ill through no fault of our own, and our continued illness is not for lack of effort to achieve wellness. We don’t want to be this way. We don’t want to be so needy or screw up in so many ways. There’s plenty of blame, shame and regret in life, and in dark hours be sure we’re heaping it on ourselves, however undeserved.

You can help us accept where we are, and work with it, if you do so yourself. Cut us a whole lot of slack. Help us not to be embarrassed at needing help, by being gracious in offering it, letting us believe that we're somehow doing you a favor by accepting your help, and not expecting any return (though we long to somehow repay all we receive), and accepting any way in which we can indeed help you in return.

Understanding:

We look normal. We show no outward signs of illness. If we have a handicapped placard on the car we might get glares from people who wonder where the heck is our wheelchair. We need special assistance and concessions, but it can be very unclear to others that we need them. Even from our own selves we might not always get the understanding we need, and we might continue to expect and demand too much of ourselves and not see why we can’t deliver.

You have already helped, by reading this. Please share this or any other information that helps people understand what it is to live with chronic pain, and how they can help the sufferers.

July 5

2009-07-07T17:39:00.000-07:00

Notice: help accepted. Gratitude returned.

The friend who can bring me Reiki and the one who can bring Restorative Yoga and the one who can guide me in Qigong, the friend with some time to help whack the weeds and the one with extra eggs and lemons, the stranger who gave me quinoa and the stranger who is helping prepare my long overdue taxes, all of you have helped enormously.

The family member who cooked some healthy meals and the one who helped me move, and all the friends and family who’ve offered insights from their health histories and those of their acquaintances, have all helped me feel less lost and alone.

The kind and caring social service worker, so different from her counterpart in another county, who has gone out of her way to guide me towards solutions for one problem and another in a life too wrecked for me to salvage alone, and the amazing friend from the long past who came back as a better friend than I could ever hope for to loan me and my children a house for as long as he could: these have kept us fed and sheltered when I couldn’t do it for myself.

The friends who offered money: I may yet take you up on that, when I know how best to apply it as a solution and not just a stopgap.

The lifelong friend who could both provide work I could do from home and be patient when I was unable to work at all, has done so much to keep me afloat and in hope.

The dear friend who made me my snuggly blanket that hugs me when arms to hug with are so far away, and the loved one who sees my pain and gives me a holiday from it with a song or a game or a silly story---there’s still love and laughter in my life because you won’t let go.

The isolation of long illness won’t conquer me if you persist in breaking through and finding me. The phone calls I’ve enjoyed and the ones I’ve had to decline, too much in pain to make a conversation: they are all appreciated. The people who prayed, chanted, made a wish, kept a thought for me and my kids: all those are felt and treasured.

I don’t know how it will happen but I have no choice but to hope and believe that long term solutions will be created, through my own efforts and with the help that so amazes me, the kindnesses that make me cry more than the pain. I never wanted to need so much help, I doubt I ever deserved so much help, and I can only be astonished and grateful to receive so much help. Your help gets me past despair and inspires me to resolve that I will reach a place of strength and back on the giving end, again.

4th of July

2009-07-07T17:34:00.000-07:00

Half an hour or so whacking weeds, two very simple meals cooked, a drive of two hours round trip, groceries bought: that was yesterday.

Today I pay for all that activity. The troll is on my chest as I wake, its weight taking my breath, panicking my heart, its foul claws piercing dealing pain great enough at first to mask my other pains.

As I breathe and relax the troll backs off a bit. The chest pain subsides enough for me to feel the other pains: throbbing in my temples, stabbing at the back of my skull, chafing in my throat, and, as if I’d run a marathon yesterday instead of an errand, deep muscle pain in my inner elbows and the backs of my knees.

Writing through it, pushing against it, is like heaving against a heavy door that blocks fresh air from a tiny, unventilated room. With great effort I can get a breath, enough to go on for a little. I write a sentence or two then subside, hearing my pulse like tides crashing inside my head and feeling the cotton invade my brain.

Wait a little, breathe, words come back, slower now, and I resume writing, until the text starts to swim and one word falls over into another, sentences stumble and tangle and I have to stop.

Sometimes it’s funny. The other night in exhaustion I tried to tell the dogs to stop barking but the yell that came out of me wasn’t “No,” or “Hush,” it was “Box.” Actually, it worked, they hushed, so all’s well between me and the dogs, and we get another in-joke to enjoy.

But I don’t want to be funny and bumbling. I want---I need---to be clear and sharp. Paperwork piles up, and not just the usual but extra paperwork created by the illness: there’s not only bills and taxes, but extra medical forms, disability documentation, social service applications, foreclosure, bankruptcy, an avalanche set off by this damned illness.

A manageable life is conceivable, and yes, even one with time and clarity for writing something fun again. I have to believe that I can get there or the moments of worst despair would do me in. Hope keeps me going: slowly but surely and with every bit of help anybody can spare I’ll build a life that eliminates enough stress and includes enough rest for there to be more to me than this struggle against pain.

For now, though, it feels like “me” has been smothered by ME. The troll seems to be winning. By the time I finish writing this, despite breaks, my brain is fogged and pulsing so hard I can’t tell you what I wrote, or go back and read it.

The Days I Don't Blog

2009-06-28T16:18:00.000-07:00

I would like to blog, or better really write. Failing that I wish while resting I could read. I spent an hour on hacking down weeds at the house where we're staying for now, and another on cooking meals, a half hour on paperwork, and that was all I had for today. Energy used, confusion descending, pain.

I would also like to swim, hike, dance, travel, go see you! Wish I could take a vacation from sickness.

If I have to be housebound the dream is to be like Laura Hillenbrand who wrote Seabiscuit despite ME and maybe someday I'll manage the disease well enough to write but now this little bit is all I have left squeezed from exhausted brain. She maybe had a lot of support. I should write about this sometime when I have a little more energy I guess. I want to explain sometime soon what it's like day after day, what I do if I'm doing "nothing."

Oh Yeah, And Another Thing It Isn't!

2009-06-27T16:27:00.000-07:00

When the acupuncturist looked over my chart and said, "Fibromylagia, huh?" I was thrown, but I knew he'd be using a different diagnostic system anyhow, so it didn't really matter what my diagnosis by Western terms might be.

Since it was on my chart, however, I gently mentioned it to my primary care doctor, an osteopath. Please excuse abbreviations: I had a character limit to work within so I kept it brief. (Bet you wish I had one of those on this blog!)

Dear Dr. Osteopath:
Acupuncturist said Fibromylagia; my understanding was diagnosis is Chronic Fatigue so wanted to check that.
Also learned that WHO uses term Myalgic Encephalomyelitis and under that term found information that seems possibly of help to me. I'd like to know what you think.
Some articles I can't access as they're in med jrnls that req subscriptions: http://www.name-us.org/DefintionsPages/DefOverview.htm
This definition seems to describe well what has happened to me and my son: http://www.nightingale.ca/documents/Nightingale_ME_Definition_en.pdf
Life impacts worsening, trying to get disability and housing, able to work less since first saw you, trying to do as you said and adjust to lower levels of activity.
Wondering if these descriptions and possible tests might help me establish disability for benefits.
Starting Pain Management Aug 11, hope that will help.
Any thoughts will be much appreciated!

Thanks,
Creek

Her answer:

Dear Creek,
Many times people use fibromyalgia and chronic fatigue interchangeably.
Regarding tests, etc, I have never seen a need for them in order to verify disease for disability purposes.
Hope the pain management program is helpful.
Dr. Osteopath

Chronic Fatigue and Fibromyalgia the same??? And no response at all about Myalgic Encephalomyelitis.

Now, it is possible for a person to be cursed with both ME and Fibro, but I pray that's not the situation I face. What I was hoping for was a clarification of my diagnosis.

Further, I was hoping that she might run tests to confirm the fairly obvious ME diagnosis.

In my wildest dreams I hoped she might help me follow the protocol for care of ME.

What I got was more muddle. It's going to be a long haul educating doctors, or else maybe a move to Canada.

Oh, Canada!

What It Is and What It May Be

2009-06-27T11:10:00.001-07:00

What it is, it still is, and that's Myalgic Encephalomyelitis. That's not some fancy long word to describe my illness, or a label with which doctors are trying to enslave me. If only the doctors would all accept that label!

Unfortunately the US CDC miscategorizes this illness as CFS. The WHO knows it as ME. US doctors are a bitch about accepting the WHO term, but here's info that makes it all clear:

The Australian treatment protocol: http://uk.geocities.com/me_not_cfs/myalgic-encephalomyelitis-chronic-fatigue-syndrome-guidelines.html

The Canadian description: http://uk.geocities.com/me_not_cfs/ME-CFS-canada-protocol.html

This is the stuff I need to get to my doctors and my kid's doctors. Meanwhile, we get a lot of bad advice and mistreatment from the medical establishment with their well-meaning but misguided approach to "CFS."

That said, whatever else I may or may not be able to eat, it looks like I might have to eat my words, or at least the ones that say "it's not gluten." Upon reintroducing gluten to my diet I immediately became ill in ways you would rather I didn't describe, but for the sake of any other ME/possible celiac sufferers in the audience I'll tell you anyhow: severe stomach cramps and diarrhea.

It turns out this is a predictable reaction if you have gluten intolerance (celiac disease) and you accidentally eat gluten.

It also turns out that you have to be including wheat in your diet when you take the blood test for celiac disease, or the results may be thrown off. So now the plan is, I'll either continue eating wheat and retake the blood test, perhaps get an endoscopy to check for healthy cilla in my intestinal tissue, or else do both.

Anyone concerned about celiac disease can find excellent information at the Mayo Clinic's site: http://www.mayoclinic.com/health/celiac-disease/DS00319

But here's the thing: I might have celiac disease, and if so I'll go off gluten again and my cilla will regrow within three years max, but that doesn't take away the ME, alas. That's just another, aggravating condition on top of the ME. So we still can't say, "Maybe it's gluten," or, "what you've got could be candida." We can only say that the ME may be aggravated by the additional presence of other illnesses.

And that's all I was trying to say in my last installment, "What It Isn't." I was trying to ask people not to try to explain away what I've got, as something else. It's like telling a cancer patient who has a cold that once they get rid of that post-nasal drip they'll be all well. Certainly she'll feel more well and better able to cope with cancer when she hasn't got a cold, and I imagine I will feel more well and better able to cope with ME if I'm able to eliminate any other aggravating conditions.

Finally, again, this is the Western view of things, and indeed, a Chinese herbalist may be able to successfully treat me with a thoroughly different set of diagnostic terms. I'm looking forward to an opportunity to try that out, some day. Meanwhile I do have acupuncture to help support my system and reduce my symptoms, praise be.

My hope is to be embraced by both Western and Eastern systems and above all by my friends and family, as I continue to cope with and counter this condition, whatever it is and may be. Call it what you will, the upshot is that I'm taking in every bit of advice I can, acting on as much of it as is humanly possible, and doing so in the face of physical pain, cognitive impairment, generally good humor, but also occasional lapses into despair from which I need you, my loved ones, to drag me back whole. Hang on tight, please, and don't let go.

What It Isn't

2009-06-25T12:39:00.000-07:00

"...now there’s proof that inflammation occurs in the brain and there’s evidence that patients with this illness experience a level of disability that’s equal to that of patients with late-stage AIDS, patients undergoing chemotherapy, or patients with multiple sclerosis."

-Dr. Nancy Klimas, on Myalgic Encephalomyelitis (What it IS)

It isn't AIDS, cancer or MS, but sometimes I almost wish it were, because we would get more understanding if we had one of those higher-profile, more accepted diseases. There are still people who think that we with ME are not ill, or are ill with something else, something more real.

Would you say to an AIDS, cancer or MS victim, "it might be candida?" Probably not. Yet friends, family and even doctors have suggested that what my 15-year-old and I are suffering from might be a panoply of other illnesses.

Today we got test results back. It's not celiac disease. The gluten-free diet suggested by the rheumatologist, followed faithfully despite cost in time and money for two and a half months, has been worthless.

We baked with gluten-free flour, went out of our way to find other gluten-free products, turned down the free pasta and bread that were offered to us although we don't make it through much more than a week on what food stamps provide. We turned down all those wheaty oaty ryed-up treats and I brought gluten-free muffins to a potluck. It didn't make us feel any better, except that I was pleased that the celiacs present were so glad for the muffins.

Doing without gluten was not making us a bit more well, but I heard that it can take many months so we stuck it out. I learned at last through my own research that there's a test for celiac disease, which is the intolerance of gluten that torments so many people. So I asked the doctor for that test.

Today, the test came out negative. Going wheat-rye-oat-free was an education and it made me sensitive to the plight of those who can't digest gluten---I'll bring them those muffins again---but what a waste of our time and money, Dr. Rheumatologist. Why didn't you tell us about the test?

It's a relief to be able to eat cheap, yummy pasta again, but it would actually have been more of a relief if indeed going without gluten had relieved any of our symptoms. But Celiac Disease is what it isn't.

Now listen.

It isn't candida either, or mold or allergies or sinuses or depression or any of the other things that have been suggested by kind, well-meaning people who hear that we are ill and long to solve our problems. Believe me, I understand the impulse. I've researched so many things it might have been, since long before we got diagnoses.

It's ME. We know that, and it's hard enough for us to accept it, but we have to. So please, you accept it too, and stop looking for other causes for a very clear presentation of this very real disease.

Granted, we could develop any of those other problems on top of ME. An already-present propensity could flower in the presence of ME, or our weakened immune systems could allow us to succumb to something we had no problem with before. Just like last week, when I had that awful cold on top of ME, yes: ME or MS or cancer or AIDS patients can all get sick with other things in addition to their chronic illnesses. But to blame our chronic illness itself on anything other than ME is denial and it won't help us get better or bring anyone any closer to treatments or a cure for ME.

Know this.

What it is, is Myalgic Encephalomyelitis.
We feel pain almost always.
Our circulating blood volume is low and our hearts are working extra-hard to compensate.
Because of that cardiac stress, exercise is NOT indicated. It makes us feel far worse.
We are exhausted, from the stress on our hearts. From the inflammation in our brains we are sometimes dizzy and sometimes confused, and we might need to reread, ask you to repeat, forget, lose the thread of our own trains of thought, need to hang up the phone and go lie down.

I know that the doctors, the family and the friends meant well. If only I didn't have to educate doctors when I can barely read long enough to educate myself! Dr. Rheumatologist, thank you for the intention if not for the advice.

You can see our pain and you want to help? Thank you, thank you so much. I have been touched by the caring we've encountered. But if you want to help, don't try to tell us what it might be. We need rest and we need less stress, so if you can provide those, great, and if not, your understanding and caring are appreciated fully, without any attempt by you at offering a cure for something that it isn't.

Immobilized

2009-05-19T14:23:00.000-07:00

Yesterday acupuncture. Felt good right after. Plummeted since. Today immobile. Wanting to get a million things done including the post I intended to create on this blog, thanking the wonderful people who have helped. Know you're in my thoughts.

more catch 22

2009-05-15T19:59:00.000-07:00

Kaiser couldn't provide psych services because we're on MediCal. The local community service organization that usually provides psych services to MediCal patients cannot provide psych services because we're on Kaiser. Depressed, yet?

Sausage on my nose.

2009-05-15T09:57:00.000-07:00

The worst pain is emotional. Sure I feel sorry for myself sometimes when I think of things I used to do and can't now, but there's ten thousand times the sorrow and frustration in seeing my older kid completely bedridden.

A kid who used to love hiking and kayaking, who reveled in working hard in the garden and in solving challenging math problems, who wrote quirky complex stories packed with clever wordplay, who plans to be a lawyer and who at 15 would like to be running with a pack, dating, hanging out---on a good day, this kid is out of bed for a meal.

I would do anything to free my child from this illness. If I could, I would take twice the disease on myself, to take it off my child. I could happily enough watch and guide from bed while my kids forged ahead, tried their talents, took on their challenges, made their mistakes and created their triumphs, finding their ways in life. If someone gave me one wish, their health is all I would wish for. But I know from the old stories that given a wish I would end up with a sausage stuck to my nose. You know the folktale? He wishes for a sausage, and she says he blew it and in anger wishes the sausage were stuck to his nose. So we do what we can, short of wishes.

We've been to doctors, we've researched on our own, we've tried alternatives, and what it seems to come down to is rest. Complete, profound rest. It's hard to get, when your mind stays active while your body lies still, and your mind travels over all the things you'd like to be doing, ought to be doing, can't be doing.

Most parents can congratulate their kids on great performances on tests, in sports, in arts, can thank their kids for helping out with household chores, can praise them for so many accomplishments big and small. My child is achieving one great and terrible feat of rest, with rarely any tears to betray the cost. I mean it wholeheartedly when I say, "Don't worry about it. I know how much you'd help if you could. You're doing exactly what you should be doing, and you're doing it so well!"

I take what we have, I try to arrange for our basic needs, I try to rest as well, and I try not to wish. There are harder lives. There are mothers who mourn their children. I treasure this child's smiles and jokes and honor the heroic courage that few but me will witness, and I try not to wish for anything but the blessings we have, because it would really be a bitch to deal with all this plus have a sausage stuck to my nose.

Sonnet 170 South

2009-05-14T23:21:00.000-07:00

Comic relief will occasionally filter into the tulgey wood. Silliness is after all my raisin dart, and ME just my tragic flaw.

Sonnet 170 South

I knew a man who dreamed he saw Joe Hill
and all the best minds of our generation
alive as him or me. I know him still.
His dog is better. He eats Ken’L Ration.

We sang together, “We shall overcome;”
the speeches were sincere, the marches long;
until we fell exhausted and sat dumb
or sang the Oscar Meyer Wiener Song.

We went our separate ways. He wrote some verse
about the universe and what it thought
and if his poems were rot my own were worse:
on being all I can be but am not.

So gather dust, typewriter, empty sheet.
The Pepsi generation can’t be beat.

The Current Conundrum

2009-05-14T12:55:00.001-07:00

It makes as much sense to prescribe antidepressants for ME as to prescribe them for Parkinson's or polio. In fact, antidepressants may worsen our condition. Yet there is a mainstream medical assumption that it would be of value for us to be under psychiatric treatment and on psych meds, and we must show that we're receiving treatment to qualify for disability benefits. And if we don't receive the minimal benefits to which we would be entitled (based on my fairly low lifetime earnings) how are we to find a place to live and finance the complete rest and healthful diet we actually need if we're to hope for improvement? In pain and brain fog, I can only hope that I can work through the system, educate the doctors, struggle, juggle, and, as prescribed, avoid stress.

For more information...

2009-05-14T12:03:00.000-07:00

"This illness is to fatigue what a nuclear bomb is to a match. It’s an absurd mischaracterization."
- Laura Hillenbrand, Bestselling author of Seabiscuit

ME Society of America has excellent information, as has A Hummingbird's Guide to ME.

Who am I and What is ME?

2009-05-14T10:40:00.000-07:00

Two separate questions, but becoming harder to distinguish.

Who am I?

I've always shied away from definitions. Even the most casual---select an icon, post a one-line status message, the tweet of a moment----bring me up short. How to define myself in this time, in this place, to this audience? How can my photo, my name or my bio convey a sense of me that has approximate truth? And of course it doesn't really matter, as we're all busy constantly defining ourselves and only briefly making reference to the definitions of others; bees touch flowers and fly on, the point never being the flower or the pollen or the honey, but the bee.

Pressed, however, I would once have defined who I am in standard ways: by what I do for a living and what I do for fun, what groups I belong to by nation and state or by gene pool, the phase of life I'm in, degrees earned, sexual preference and familial relationships. I remain a female Arab-American Californian MFA USC Film School graduate straight liberal pagan environmentalist furry homeschooling single parent in her 40's, not in any particular order.

Once I would have added, "I'm a screenwriter. I write and edit for a living, and sometimes work with the state parks. I enjoy hiking, kayaking, and struggling to identify flora and fauna. I prefer acoustic music and particularly world folk music: listen to a lot and play a little. I enjoy folk dance and am learning a few varieties. I love steampunk style and have some sewing and manufacturing projects in mind, as well as a steampunky screenplay in the works. I could be called a bit of a homebody since I enjoy gardening, cooking and baking more than going to parties. Even so, my kids and I travel whenever possible, taking road trips, visiting friends and family, camping. I can cross-country ski a little and want to learn more. I'm not a great artist but I like to mess around with pastels, sketch a little. I dream of sailing clockwise round the Mediterranean, stopping in every possible port and recording dance and music. I'm a homeowner, working to pay a mortgage and planning on assisting my kids through college with the equity."

All of that has changed.

Enter the second question: What is ME?

Myalgic Encephalomyelitis is a disabling disease. I won't go into a clinical definition. You can look that up as easily as I can, and can probably comprehend it better than me. Reading comprehension is one of the things the disease has stolen from me.

So I'll stick with what ME is to me. ME is the pain that holds me in bed for an hour or two after I wake. It's the profound exhaustion and all-over aching that strike after the slightest exercise. It's struggling to cook a meal or wash a dish, and feeling triumphant but exhausted if I can run an errand. Then, it's back to bed to rest up, hoping to ride out the pain and haul myself up onto my feel again to cook dinner.

Take the worst sinus infection you ever suffered and keep it with you forever. Or how about pneumonia plus a concussion? I've had both so I know. This is how ME feels to me.

I have better days and worse days. I make plans and cancel them. Loose ends stay handy, ready to be picked up and dropped again.

I can't dance, play music, hike, sew, earn a living or plan for my children's education, travel or dream anymore, so who am I? Am I ME?

ME is the governing part of me, now. It's the part of me that says I can't add to or revise this, that if it will ever be posted it must be posted now, and that this much writing was too much: it's time to rest, and rest, again.