Thursday, November 17, 2011

Hazel's Wish

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! 

Friday, November 4, 2011

The Spins and 2 Helps for Centering

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.

Sunday, October 9, 2011

Movies, Rock Stars, Attention

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.

Thursday, September 29, 2011

Stop the Deaths: Share the ICC on ME.


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.

Wednesday, August 17, 2011

Infinite Wisdom

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.

Friday, June 10, 2011

X & Ethics: an open letter to Science Magazine



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.


Saturday, May 7, 2011

What do we want?

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.

EDIT: WPI and by extension its activism wing ANIDA have been discredited recently. I do not advise donations or membership in these organisations unless they successfully restore a badly damaged reputation. 26 Feb 2012

Tuesday, May 3, 2011

One Healthy Day

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. 

EDIT: WPI and by extension its activism wing ANIDA have been discredited recently. I do not advise donations or membership in these organisations unless they successfully restore a badly damaged reputation. 26 Feb 2012

Sunday, April 24, 2011

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

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.

EDIT: Goes to show how fooled I can be.

President Obama is far from walking his progressive talk. Meanwhile, WPI and by extension its activism wing ANIDA have been discredited recently. I do not advise donations or membership in these organisations unless they successfully restore a badly damaged reputation. 26 Feb 2012

Wednesday, April 20, 2011

Help Theda Myint

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.

Monday, April 18, 2011

Email Testimony to MECFSAC

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

Monday, March 21, 2011

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

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.

EDIT: WPI and by extension its activism wing ANIDA have been discredited recently. I do not advise donations or membership in these organisations unless they successfully restore a badly damaged reputation. 26 Feb 2012

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.

Monday, March 14, 2011

ME&CFS Patients and Researchers Share a Common Goal

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.

Friday, February 18, 2011

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

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.