Wednesday, November 6, 2013

Hill Park Report Card: My first follow-up and my kid's initial visit.

Right at the top I want to say, HOORAY!

Something most patients take for granted, but it feels miraculous to an ME patient: a specialist who tests for the right infections and treats them.

Further, something too few patients get: a specialist with long experience in both conventional and alternative approaches.

And beyond that, Dr Bouch and all the staff at Hill Park Medical Center make every effort to find the most affordable route to tests and treatments that would otherwise be far beyond my insurance and budget.

So, as midterm grades are getting reported in universities, I will offer this report card regarding our care at Hill Park.


Informed: A

Doctor Bouch cites experts and studies including very recent information from the broad field of neuro-immune disease and incorporates them in his testing and treatment.

Open-minded: A

When brought a study or publication that he hasn't read, Dr Bouch will review it carefully and give you feedback on it.

Affordable: A+

Already charging lower fees than other experts for office visits, Dr Bouch and his staff make extra efforts for the most impoverished patients, finding adequate tests and treatments that will be covered by our meager health insurance.

Sensitive: A+

Dr Bouch and the Hill Park staff are sensitive to our sensitivities, offering low light, a place to lie down while waiting, a cup of tea during our visits. Even my severely-ill kid made it through her appointment in relative comfort, finding herself able to talk directly with Dr Bouch much of the time and only needing to refer to me for the answers to a few of his questions. That is an excellent endorsement of his bedside manner.

A specific example: Seeing how ill she is, Dr Bouch decided to forego a POTS test that would doubtless have had her reeling with intense post-exertion neuro-immune exhaustion. He's capable of taking her POTS-type symptoms into account in treatment without having to torture her for confirmation.

Patient and Thorough: A

Each appointment leaves me with a whole lot to absorb and no matter how I try to take notes, I wind up with follow-up questions. Everyone at Hill Park has been excellent about responding to my phone calls and emails, following through with tests and prescriptions, and explaining things over again if I didn't get it the first time.

Effective: A

Noting that these are just midterm grades and it's early days yet --- we're not ready to confer a diploma with honours --- still, it seems our new specialist is on the right track. I have still had down days with the up days and a few complete crashes, but all in all, since I began seeing Dr Bouch I have had far less pain and far more energy, and a far more optimistic view of light at the end of the tunnel, or at the very least partial visibility.

That's all I can write for now. I will try soon to catch my readers up on specific tests and treatments though I'll give again the caveat I've given before: I'm not up on the science, I don't understand the interactions of all these methylations and mitochondria that muddle in my ME mind, so this won't be the blog that you keep beside you in your home laboratory with its limbics all a-bubble. Wait, a limbic is not one of those cool glass pots in the mad scientist's inventory, among the crucibles and coils? Okay, time for me to sign out, whatever it was I meant to say... as you can tell. I've got a long way to go before I'm well but for now, a hearty endorsement of Hill Park.



Muddy Waters: the IOM to the rescue, not.

With about 25 years of efforts by some agencies to muddy the waters, while other agents and entities strive to avoid the voodoo and get some serious science done despite many obstacles, it's no wonder there's no one solid definition of ME broadly accepted.

Obstacles include pseudo-science perpetrated by the psychopharm lobby that wants to keep us all on expensive drugs that weren't designed for, and don't work on, ME. Also misconceptions of the nature of the disease, planted, perpetrated, perpetuated, ppbpblpblphh, by the CDC, haven't helped. Their definitions have only stirred up more mud.

And an accurate definition is literally vital: of life-and-death importance. How can a disease be researched, diagnosed or treated if it can't even be accurately described?

Personally, I have become incapable of following the science or the politics of ME. I try to share what has been helpful for me and my kid: info on a good doctor or a pain relief method, stuff close to home. The big picture is way beyond my ability to absorb and still manage to do the day-to-day. Life lately is about medical appointments, insurance denials, treatments, and of course the ongoing struggle to afford not only health care but housing, utilities and transportation. Life is one kid in college on the opposite coast, while the other kid is mostly in bed upstairs in pain. Life isn't allowing me time to understand and share what's going on in the wider ME world.

But I couldn't help hearing about the latest controversy, regarding the IOM. A new acronym to me, it stands for Institutes of Medicine. It seemed they were going to work on a new definition of ME. Good, right?

Wrong.

As it turns out, the IOM has a bad track record, and is being paid big bucks to re-do badly what others have done better, before. This article helped me get out of the "confused" camp on the question.  So I am blogging mostly to share its helpful explanation, but also to make a couple notes regarding things I have shared in the past in this blog.

I know that I have referred at least a couple of times to the International Consensus Committee's criteria and primer on ME. (Two different things but coming out of the same group.) Those, as it turns out, are flawed in several ways: the ICC is muddied by references to the since-debunked XMRV, the primer fails to mention the frequency of HHV6 infection and possible benefits of treating for it when it is found, the ICC falls short on discussing pain while overemphasizing fatigue and the primer recommends GET which has actually proven harmful to ME patients... yes, a valiant effort but seriously flawed.

 According to current ME patient community consensus (MEPCC?) the best existing definition -- which could simply be adopted instead of spending wads of money on a new and probably flawed definition -- is the Canadian Consensus Criteria, on which the ICC definition was based. So contrary to my earlier recommendations of the ICC, this CCC might be the best thing to share around. For now.

In short, with little recourse or resource, we with ME remain in a ghetto of pain and brain-drain, while the money that should be spent on solid study is squandered to make the waters more muddy. We'd maybe do better to go down to New Orleans with Mr Muddy Waters himself, and get us a mojo hand.



Monday, October 28, 2013

Cannabis Coconut Oil and Cannabis Tincture

Often the hardest part - obtaining the main ingredient.

The hardest part in most of the world alas is usually obtaining the cannabis but if you can do that, there are two preparations that I think might be useful - the cannabis coconut oil (which can be taken internally, used to bake or cook with, but also makes a great body rub and the medicine absorbs very well through skin!) and also the tincture. Tincture is very convenient and discreet - one can just take a few drops under the tongue, or squirt it into a beverage, or load it into an e-cig to vapourise it.

I use basically the same method for either.
1) if making coconut oil, melt the oil to a liquid. If making tincture, start with either vegetable glycerine (sweet - might not be ok for person with diabetes) or propylene glycol - food grade kosher propylene glycol or vegetable glycerine can be bought in large bottles from some herbal supply stores or from Amazon.

2) Break up/grind the dry cannabis leaf, trim or buds so the plant material will expose as much of its surface as possible to the liquid base. (The strength of your preparation will depend mostly on the strength of the cannabis strain you use and whether it's leaf, trim or bud - just use the best you have available, and if able experiment with different strains to see if a high-cbd or high-thc or more balanced strain is best for your patient).

3) Put the cannabis into a glass jar, cover it completely with the tincture base, smoosh it or shake it to get it all soaked and you can probably add more.

3b) If you're making coconut oil, soak and cover the cannabis with about two-thirds coconut oil and one-third water.

4) Once it's all soaked through and there's enough liquid to a-little-more-than-cover the cannabis, screw a metal lid on loosely and place the jar in water up to an inch or so lower than its rim, in a slow cooker (aka crock pot) and turn the heat down to low.
You can cook multiple jars at one time but just make sure they don't get boiling wildly or they might bang against each other and break.
If you don't have a slow cooker you can do this in a bain marie on the stove. Just place the covered jars in a water bath in a saucepan, and bring it to a low simmer and keep it there.
Add a little more water if it gets low, but you probably won't need to as you're just simmering, not boiling.

5) The strength also depends partly on how long you cook and my only rule of thumb is to let it cook for at least a couple of hours. Occasionally, carefully lift the jars out with canning tongs or a pot-holder and give them a bit of a shake or swirl. Cook until the liquid is a nice rich green colour.

6) Remove and let cool enough to handle, and then strain. This is the hardest step- trying to preserve as much of the liquid as you can. The friend who taught me how to do this, Stu Wyatt, used cheesecloth and squeezed it through but found that was too course so he switched to nylon. I found any sort of fabric retained too much of the oil for my liking so I strained it in a colander, pushing with a wooden spoon to smoosh as much liquid from the plant material as possible, and then re-straining through a finer food strainer. Then Stu found a great gadget, a tabletop fruit press, which strains and presses the liquid out really really well, and then I found great success using a coffee press. Whatever you can use that squeezes the liquid from the plant matter, cleanly and efficiently, use that.

If you made tincture that's it - you're done. You can use herbal tincture bottles that come with eye-droppers to bring it to the patient in a manageable size container, but you can store your tincture in the glass jars (cleaned of plant matter) with the lids on tight.
If you made coconut oil proceed to steps 7 and 8.

7) Cool to separate. The reason you added water to the coconut oil and plant mixture, is that it takes out excess colour and flavour. The medicine bonds to the oils in the coconut oil, but some of the colour and smell go away in the water. But now you have this warm oil-and-water mixture that has to separate. Fortunately coconut oil is solid at coolish room temperatures so you can just set your strained mixture, all clean and free of plant matter, into a wide bowl or pie pan and let it cool. After it's parly cool you might want to transfer it to the refrigerator to finish cooling -- speeds it up.

8. Store. When it's well cooled, the hard coconut oil will be on top of the liquid water, so you can just lift/chip it off, pat it dry on a kitchen towel, and then perhaps remelt it to return it to jars for storage. It can be kept at room temperature for some time but it keeps longer in the refrigerator.
The left-over water doesn't have much use, nor the left-over plant matter - most of the medicine should be well out of there and bonded to the tincture base or the coconut oil.

9. Use. Again, the cannabis coconut oil is great for cooking and eating. Substitute for oil or butter in your baking. Or try a teaspoonful dissolved in warm milk at bedtime. Topical use is very effective also, as the medicine absorbs well through our skin, so just rub some on wherever it hurts.

The tincture, again, can be taken a drop or two under your tongue, or stirred into a beverage, or vapourised in an e-cig or a vapouriser designed for use with liquids.

Another great medicine is Phoenix Tears, a highly concentrated oil taken orally a tiny dab at a time. I don't have the facilities to make that but there are instructions online. EDITED TO ADD NOTE: It has been found that the naptha method of extraction used in the classic Phoenix Tears recipe leaves carcinogens in the final product. Please use instead the alcohol extraction method detailed here: http://www.cannabiscure.info/files/cannabis_oil.htm

Also, here's recipes for Butter and Ghee from Jeff Ditchfield, Cannabis Cultivator extraordinaire. For much more excellent information see his site on Cannabis for Cancer and Medical Marijuana Treatments. It includes helpful guides for making your own medicine in many forms.

Please do pass this information along. The only thing that feels better than feeling better, is helping other people feel better. Enjoy!

Tuesday, September 17, 2013

Trivial Keys to Deep Truths: Gender Pronouns and More



This post has nothing to do with ME, or only peripherally. My transgender M-F daughter also has ME but this post is about that other medical situation: her being transgender, me supporting her as the young woman she is.


A friend wrote me not long ago sharing her “brother’s” blog post about being transgender, but her sibling, like my daughter, is Male-to-Female transgender, so a woman, her sister. And right there from the pronoun, we family members begin coming to terms with seeing our loved one in a new light. Here’s what I wrote back to my friend, pretty much:

Well, I know it's not easy because it involves rewiring your brain from a lifetime's assumptions about her, but first of all, it's your sister’s new blog post. And if she chooses a feminine first name you will have that to stumble over too. But we often have to adjust our definitions of people to fit new information and we manage.

The thing is, it is our definitions, not hers, that have to change. She wrote so clearly and beautifully, making it plain that she has always been who she is, so on the one hand you don't really have to change how you think of her as a personality—she is still the person you have always known, likes the same work, holds the same beliefs, will laugh at the same jokes that amused her in past and be drawn to the same books and movies. The only thing about her that has changed is that she has decided to stop being afraid of sharing and declaring her gender identity - and sadly she will be having to defend it too.

So what has to change in her family and friends? We have to accept and defend her, and show her those things. But she is clearly a person who understands the deep and subtle nuances of communication in our society. So you should start from where I would have told you to start anyhow, and that's deep within you.

My transgender daughter is like your transgender sister in that she too is not interested in most of the outer trappings of typical womanhood in our society. My daughter doesn't wear makeup or fuss with her hair and clothing much. She is taking hormones and is pleased with the changes in her shape, but the real essence of being a woman is much deeper. I am a woman who rarely wears makeup, I don't fit a lot of stereotypes about women in our culture, and yet I have the privilege of the body I was born with, which communicates to others to treat me as they treat women (whether the way they treat women is something I like, or not—and sexism, like homophobia, is something that takes on whole new nuances for transgender lesbians like my daughter and your sister).

But the point is about those deep understandings. Your sister’s family and friends can come to grips and show support by taking in the truth of her gender on a deep level. It's not easy but fortunately the use of superficial keys will help open the doors for those deep explorations. Pronouns and other gendered referents for example: practice using her and she, sister and woman, in referring to your sibling, and as you use those superficial words, take them into your own deeper thought structure. Think of her femininity. Recognize her as the woman she is.

This superficial thing, this language, is wired into our understanding so deeply. Words have power. The more you refer to your sister as she, the more you will know her as your sister and a woman. Sure, you will also have to ponder: you will spend time reviewing your whole shared life history in your mind. You will come to realisations, like the realisation that you as her cysgender sister may have inspired envy which she couldn't express, as you developed an obviously female body and were accepted into the society of women while she did not and was not. And the realisation that as a woman she may use the women's restroom, should use the women's restroom, but won't ever be asking another woman for a tampon. You will grapple with that. If she doesn't have to pass through our blood rites, is she still a woman? Ah yes—there are many women who for one reason or another don't bleed and yet we all know they are women... and so on, and so on, you will review and revise all of your assumptions, and being a sensitive and deep person yourself, you will successfully change your brain, change on the deep level, which she, also a sensitive and deep woman, will pick up on.

But those superficial keys are useful in the process. You will grow gradually so accustomed to saying that SHE is your SISTER and you support HER as the WOMAN who SHE has always been, that if for some stupid societal reason (it comes up for us in paperwork and bureaucracies all the time since my daughter hasn't yet changed her official legal gender status) you find yourself forced to say, "brother," "him," "he," and "his," you will feel intensely those quote marks. You will feel deeply wrong using the masculine terms for her. As wrong as if you used them in reference to yourself or your mother.

Defending her is partly a matter of gently but firmly insisting to others that they too use the appropriate, feminine, referents. You learn a lot about people when you do this. You will be surprised sometimes by which people are supportive and which are resistant. You may have to go through some difficult educational conversations with some, and you may have to drop it for the time being with others, but your consistent efforts to convey the truth, and the normalcy and legitimacy of that truth, to others, will also help you make the deep changes you need to make. Every time you speak out, stand up for her and defend her, you will own it just a little more deeply.

In the cases of women and girls who are more girly than your sister and my daughter and myself, fellow women can use some other superficial keys to open those deep doors: we cysgender women can take our transgender sisters shopping the way we would shop with any of the girls and try on clothes and makeup together, or watch a chick flick at home while doing our nails. In our cases, there are other little things, like choosing the birthday card "For my Dear Sister," instead of "Brother." At first it might feel like pretending, but it will become natural. And some day you will have a new deep realisation: all those other things, those things that had you calling her a boy and a man? THOSE were pretenses.

The degree to which you can and should talk with her about the whole process depends on so many other things in her personality and yours and your relationship, but I would suggest that you try. When you hit the awkward and uncomfortable moments, make the effort to open up and discuss, learn and teach. You can't know what it is like to be transgender and she can't know what it is like for you to accept, but conscious examination is our human way and sharing it helps.

My friend, I can say I sympathise with you and I do, for the small things, the faux pas that will surely happen, the many times you'll have to tug your foot out of your mouth and the times you'll have to try to tug other people's feet out of theirs, but on the deep level I am so happy for you. Your sister has given you a great gift of honesty and trust, which will bring you as siblings, as two women, as two people, to a closer and deeper relationship, based on truth.

Thanks so much for asking me this question. I didn't realise I had so much to say!

hugs and congratulations,
Creek

Wednesday, September 4, 2013

Hill Park Visit #1: A Shift

With high hopes and deep trepidation in equal measure, I went to see a specialist at last. Two weeks later I've finally got a little energy and mental clarity I can use to blog it up, and I would love to think this energy (though fueled by steroids as I'll explain further on) might herald a shift after 6 years ill.



I will try to go into some detail here, both for the benefit of fellow patients who (if they can read the whole thing or get someone to read it to them) will want all possibly particulars, and for my own benefit. Until today much that we discussed was hazy to me and I was afraid my scrawled notes wouldn't be enough to remind me of all that was covered.

Dr Brian Bouch has been practicing integral medicine for about 30 years, working quite a lot with ME, GWI, Lyme and similar illnesses. He practices in Petaluma, CA at a clinic called Hill Park. I had not heard of him before -- Trepidation! But he came highly recommended by one of my acupuncturists -- Hopes! He was more accessible to me, in terms of both location and fees, than other specialists I'd considered seeing, so that fact tipped the scales in his favour and I made the appointment.

We had an appointment of about an hour and a quarter, plus I spent a little more time with staff who conducted one test and explained procedures for some lab tests. The time spent waiting was not unreasonable, and the doctor and his staff encouraged me to lie down as long as I needed when I was tired.

The fees for both the visit and some testing, maybe even some treatment, were provided by kind donations of family and friends. I wanted to make certain those funds went as far as possible. My daughter and I, both ill, live on fixed incomes that barely cover living expenses, so it was only through those donations that we could see a specialist. Specialists for our weird disease(s) do not accept payment via MediCal/Medicaid or indeed, often, any insurance.

I brought with me the ICC primer and while he saw me, Dr Bouch had his staff copy it for him. Though disappointed that he wasn't already familiar with the publication, I felt his receptivity was a good sign. I felt further reassured by the questions he asked and information he referred to, and the tests he ordered.

As a practitioner of integral medicine, he seems to have a foot firmly planted in each world: a confident conventional MD and an equally knowledgeable user of alternative modalities. He started me on herbal licorice root to raise blood pressure (something my acupuncturist had also suggested) but he also suggested we test for HHV6 and, depending on result, possibly go with fairly high doses of Valcyte. So I feel good knowing that we're seeing someone who will work with all the available tools regardless of which medicine bag they're kept in.

Despite unfamiliarity with that primer from the ICCME, Dr Bouch seems to be pretty up to date on the research. Regarding HHV6, he mentioned the work of Dr Montoya at Stanford, and the good outcomes many of his patients and research subjects have experienced with Valcyte. He also mentioned mycoplasma in Gulf War Illness, and the similarity of many of these neuroimmune diseases.

In addition to licorice and Valcyte, among possible treatments Dr Bouch threw into discussion (depending of course on test results) were 5HTP, L-Tryptophane, self-administered B-12 shots and the steroids I mentioned I'm on right now.

Steroids: what's that about? Well, interviewing and examining me, Dr Bouch determined that I have not got osteoarthritis as earlier diagnosed, or else I have only a mild case. (A look at my xrays will decide for sure.) But osteoarthritis or not, what's really causing the screaming pain in my hips, increasing over the last two years and more, is trochanteric bursitis with iliotibial band syndrome. My physical therapists and then my GP confirmed this in their reexaminations, and adjusted treatment accordingly, and today my GP shot some cortisone into the left trochaic bursa.

The effects are astonishing. So far, no relief of the bursitis pain -- indeed, it's a little worse, and that's as my GP said it might be: often worse before it gets better. What I am enjoying thus far are the side effects of energy, mental clarity and decreased generalized pain. I hope the inflammation in my bursa will diminish as a result of this treatment, but even if that doesn't work, I would love to get a shot like this every day.

Alas, that won't happen, but I do get another shot, in the other hip, next week. I will plan my day to include some pleasurable outing afterwards, I think, to take full advantage of the boost both from the steroid itself and from the local anesthetics admixed with the cortisone: lydocaine and m...something else that ends in a "caine." Anyway, as these locals weren't mixed with anything to keep them in the one injection spot, they went coursing happily through my bloodstream, filling me with this wonderful sense of wellbeing, while the cortisone itself is boosting my energy. Combined, they made me feel actually well, for a little while, aside from the familiar pain in my hips.

As to that pain, the insult of the injection (it hurt like a snakebite and a half) and the initial aggravating effect of the cortisone in my left hip have balanced out to be about equal again to the untreated pain in my right hip. So, so far, so good, and the temporary absence of my usual overall nerve and muscle pain is a more-than-fair tradeoff.

While my GP provides the cortisone that might prove the turning point for my hip sockets, the physical therapists I've been seeing at Cotati-Rohnert Park Physical Therapy, for presumed osteoarthritis, have also adjusted treatment according to the new diagnosis of trochanteric bursitis. Slightly altered exercises, herbal recommendations (for ginger and turmeric, both excellent anti-inflammatories) and even altered massage techniques, plus a new and better TENS unit, have all come out of this PT response.

So already I owe a great deal to Dr Bouch, who was the one to spot the correct diagnosis. He does seem to have a good eye for what Dr Byron Hyde points out in his wonderful little book, Missed Diagnoses, are so often the overlooked and treatable actual diseases or coinfections of ME patients.

So now, back to the appointment two weeks ago, with Dr Bouch. One of his staff did a modified test for POTS on me, but it came out inconclusive - a result which neither confirms no rules out POTS, though something like common syndrome within the complex picture of ME iscertainly indicated by my symptoms. The test was far less grueling than the infamous Tilt Table, but it did require me to stand in an uncomfortable lean against the wall, for fifteen minutes straight - a feat I would not have imagined could be so difficult.

Aside from looking at my B12 levels and other tests already performed on my GP's orders, Dr Bouch is having me get the following new tests:

HHV6
H-Pylori
Bone Density
C&S
O&P
Adrenal Saliva Cortisol Test
heavy metals test

We will eventually go for better Lyme testing than I've had so far, as well. Depending on test results, treatments my include, as mentioned, Valcyte, B-12 injections, 5HTP, L-Tryptophane, and the antibiotic treatments for Lyme. Another treatment we discussed, sadly expensive: if the heavy metals test shows high levels of mercury, Dr Bouch will be wanting me to get my amalgam fillings replaced.

After about an hour of interview and exam followed by even a minimalistic POTS test I was far more tired and confused than I realized, but the staff, well aware of ME patients' limitations, gave me all the time I wanted to lie down, drink a little tea, and rally my energy for the trip home. I thought I was ready to go before I was -- they must have noticed I wasn't looking 100% and did their best to encourage me to rest longer -- so I missed several points in the demonstration of how to use the test kits they provided. Staff were very helpful when I had to call back and email later with a wide range of questions on everything from which tests were highest priority, to how and where to get them done, and which of the discussed treatments we could begin before or without testing.

The tests themselves loomed as a formidable expense, two alone coming in at around $700, but with understanding of my financial constraints, Dr Bouch and his staff, and my GP and her staff, are working together to find and order insured alternatives for as many of the tests as possible. Once we have been through this process with my own tests and treatments, or at least had about a month of starting down that road, we may be able to estimate an amount for my daughter's similar tests and treatments. That will be a big help with further fundraising and yes, we are going to need to do quite a lot of fundraising to bankroll this entire process. There will be follow-up doctors' visits and tests to follow up and recheck other tests, and of course treatments, and it's only as we go along that we can learn which are and which are not going to be covered by MediCal.

I hope money won't completely stall this process. I'm looking into fundraising options and that is a third purpose of this blog post:
  1. share information about a clinic many of us ME patients hadn't heard of and relate the story of my treatment there; 
  2. organize and remember my notes and thoughts on my first visit; and 
  3. start putting the information of what it is we're trying to do and how, into a format that can become the basis of an appeal for further funds. 
All that is a ton of work, particularly for an ME patient who isn't going to be on steroids every day, so can usually manage to write no more than a whimsical bit of doggerel these days. I'm not going to be able to produce one of those highly-technical patient blogs, that throw around the clinical and research terms so laissez-faire, with a working knowledge of the actual levels of this and that we look for in the test results, but I may be able to rough out a picture of what Dr Bouch is doing and why. And I do have high hopes, currently strongly favoured over deep trepidation.

With a team that includes Dr Bouch himself and his excellent staff, my acupuncturists, my GP and her excellent staff, and the physical therapists, all friendly to both traditional and alternative modalities, I think that I - and my daughter too, when she's well enough to make it to her initial appointment - stand a good chance of improvement, at least, at last. But who knows what waits in test results... I will do my best to keep you, my friends and fellow patients, informed. We will find out if Hill Park merits a place on lists of ME-literate cinics. Already I'm feeling a shift, and I don't think it's only the seasons.

Friday, August 9, 2013

Disabled & Dissed, Part 2

A couple of posts ago I told about the surreal nightmare I was going through trying to get my kid's wisdom teeth out. Since, I've been plugging away at the situation with more phone calls and emails, and the help of three case workers.

For those of you new to the continuing saga, it is mostly revealed in the email exchange below, but I will add that when I attempted to contact the person I was referred to at DLSC (in a chain of referrals which ongiong readers may recall with amusement) her extension took me to the voicemail box of another person entirely.

And so with further miscommunications, vacations, absences, evasions, delays and excuses and oh please don't tell me that was sarcasm on the part of the oral surgeon?! ...while my daughter's pain increases ...our story continues. Names have been changed, just because I'm that nice.




re: extraction of 3 wisdom teeth and 1 molar
patient: Colleen Feet
summary: complications of Myalgic Encephalomyelitis ("cfs") necessitate extraction in hospital,  insurance denied by Partnership and awaiting a medical necessity note/TAR from UCSF since April
Action Required Immediately: Schedule in-hospital extraction, file TAR.
Dear Dr. Cats,
I'm writing on behalf of my daughter Colleen, age 19, whom you saw several months ago. As you may recall, you agreed with two other oral surgeons she has seen, that the extraction of her wisdom teeth and molar should be performed in hospital due to the complications of Myalgic Encephalomyelitis (ME). She is so severely ill, it is necessary for me to handle her communications and appointments for her.

Specifically, patients with ME (also called "cfs" or "cfids") are extremely sensitive to any medication, including anesthesia, and for safety must be given low doses and carefully monitored during any surgery or dental procedure. Further, certain local anesthetics -- including Novacaine and others containing Epyhnephrine -- should not be given to ME patients. Details can be found in the JADA article Postural orthostatic tachycardia syndrome: Dental treatment considerations, John K. Brooks and Laurie A.P. Francis, JADA April 2006 137(4): 488-493 available online at http://jada.ada.org/content/137/4/488.full.pdf , a hard copy of which I brought for inclusion in Colleen's file at our first visit. Also included in her file is information from the New Jersey Chronic Fatigue Syndrome Association, copies of which are available here: http://www.njcfsa.org/anesthesia/ , also regarding anesthesia considerations for ME patients facing surgery.

Colleen has needed these teeth removed for at least four years, now. The delay is causing her great pain. We have done all we could during these years to pursue soonest possible surgery. The oral surgeon she saw in our former home area did not have hospital privileges in that area and Colleen would have been required to travel four hours each way to the nearest hospital where the operation could be performed. This was part of our impetus for leaving that remote area to return to the Bay Area. Colleen's regular dentist at Healthcare Place, who referred her to UCSF, where she was seen by you, Dr. Cats, and you recommended surgery in hospital. Angie began the process of obtaining insurance approval from both MediCal and Guardian Dental. Colleen's primary care physician also agrees that it is necessary for the extraction to take place in hospital.

I phoned Angie in April to find out what the delay was, in getting an appointment scheduled, and she explained that the in-hospital piece was denied by Partnership Health, the HMO charged here in Sonoma County with administering MediCal claims.  I then phoned Partnership and they said that they require a TAR from UCSF with a note explaining the medical necessity for the surgery to be performed in hospital with an anesthesiologist attending.
Here, the trail becomes confusing, as Partnership said I needed to contact UCSF as the ball was in your court, while UCSF told me to ask Partnership why there was a delay, but Angie explained to me in April, again in June and again today that she emailed you in April, Dr Cats, asking for that medical necessity note. Perhaps that email was lost; at any rate, there the process stalled and meanwhile a patient already mostly-bedridden with chronic pain is experiencing further pain from the impacted wisdom teeth. Costs to our family have increased during this time as well, as it has been necessary for us to pay monthly for a COBRA plan on the Guardian dental to ensure that that insurance remains available at the time of surgery.

I have cc'd social workers who are assisting me in follow-up on this issue; I am also in contact with the Disability Legal Services Center of Sonoma County in case the assistance of an attorney should be required; but we understand that no appeal of a decision can be made until there is a clear denial of insurance coverage, and at this point Partnership appears to maintain that they are not denying coverage; only awaiting paperwork from UCSF on which to base a decision. It may be necessary for a new TAR to be filed as it appears the last one was filed many months ago.

Seeing no reason for further delay that is causing my daughter untold suffering, if it appears necessary after today's communications between us, I will copy this information in a separate message (because of their online contact sytems) to my elected representatives and to the attorneys at DLSC, but I am confident that this has only been a horrific bureaucratic bungle that will be most expeditiously amended.

Please contact me immediately to assure me that the appointment will be scheduled without further delay, by reply to this email or by phone at either my home phone or my mobile number. I will be most grateful for your assistance. I will also follow up with a phone call to your direct line.  I understand that the costs we are requesting insurance coverage for, are about $65,000 to $85,000 for hospital and about $1,600 for the rest (extraction of 4 teeth) -- a considerable sum -- but as further delay in surgery would be outright cruelty toward a patient in terrible pain, I hope and trust that the procedure can be scheduled now, and the insurance payments billed afterwards.

I would like to note in closing that today, 8 August, is Severe Myalgic Encephalomyelitis Remembrance Day. Of a conservatively-estimated 4 Million ME patients in the US alone, 25% suffer from severe cases, being housebound or bedridden like my daughter. That's 4 million patients who require this special consideration during dental treatment, and 1 million who are incapable of advocating for themselves. ME patients die on average 20 years younger than their counterparts without the disease, of neurological and cardiac damage, rare cancers and leukemias, and suicides brought on by medical neglect. Thank you in advance for anything you can do to help my daughter.

Sincerely,
Creek Feet

    ~~~~~~~~~~~~~~~~~~~~~~~~
    Hello Mrs Feet,

    I am not clear on the details causing the delay in your daughter's case.  I do know that I contacted your insurance after our first meeting.  I am sure that we indicated in our initial authorization request your daughter's medical condition.  Perhaps your legal team* can contact your insurance providers.  Our office should be able to fill our a TAR form for this procedure.  The medical indication would be your daughter's diagnosis of myalgic encephalomyelitis. Angie should be able to enter this in the TAR.  Angie, can you send me our initial authorization request. I am away for the next week but should be able to address this further when I return.

    Dr Cats


    * My legal team? Is that Sarcasm, dear readers?

    ~~~~~~~~~~~~~~~~~~~~~~~~
    Thank you Dr Cats;

I am glad to know that you do not see any reason for delay. My daughter will be very grateful to obtain a surgery appointment as soon as possible.

    Sincerely,
    Ms Creek Feet

    ~~~~~~~~~~~~~~~~~~~~~~      
           
    Dear Dr Cats, Angie and case workers;

    To reply a bit more fully and perhaps more helpfully; I am not clear on the details causing delay either. All I know is that I have spoken several times with Angie who told me in April and again in June that she had emailed you, Dr Cats, requesting the medical necessity information, and that when I spoke with Partnership they said they needed to know when the most recent TAR was filed. Since June many attempts were made to contact both UCSF and Partnership, for further information, both by myself and by case workers assisting me, and we did not receive responses to the messages we left.

    Angie, could you please give us that piece of information? When was the most recent TAR filed? And what action, if any, was there, from Partnership?

    Dr Cats; you write, "Perhaps your legal team can contact your insurance providers." I am sorry if I gave the impression that I have a "legal team." If however you feel that the delay is being caused by the insurance providers and that I may require legal representation I will do my best to get that sort of assistance, but wish me luck: I am a disabled single mother living on disability, with two daughters - one severely disabled and one in college. I certainly don't have money to hire a "legal team," and services providing any sort of assistance to the poor have been cut back severely since the economic crash and bank fraud that took my house and financial security. I have however been in touch with the Disability Legal Services Center who have tried to provide me some contacts and advice to help me proceed in the face of this unusual delay in medical care.

    And medical care is what this all boils down to. I am sure you can imagine the pain my daughter is undergoing, and as a dental surgeon Dr Cats you know better than I the risks she faces if her surgery is further delayed. I do not know, any more than you do, the cause for the delays but if there is anything you can do to assist I am sure you will have the compassion to do so.

    Case Workers, could you please identify any sources of services -- perhaps ombudsman, or some assistant to an elected representative -- who might be able to intervene if there is any further delay? It is my layman's understanding, on the slight research I am able to do, that impacted wisdom teeth, if not operated on, can cause not only severe pain such as my daughter is experiencing, but nerve damage, cysts and tumors. I am a mother very much concerned for her daughter's health and safety, and as I am a disabled mother in economic hardship I need to call upon any resource available for help.

    Thank you all, Dr Cats, Angie, and case workers, for your understanding and any assistance your best efforts can possibly provide.

    Sincerely,

    Ms Creek Feet (not Mrs) MFA

Tuesday, July 30, 2013

Doctors recommending exercise for ME patients?

I'm saving this as my standard answer to any doctor recommending exercise to patients with M.E.; you are welcome to yoink and use it in full.



“Post- Exertional Neuroimmune Exhaustion (PENE pen-e)

Normal fatigue is proportional to the intensity and duration of activity, followed by a quick restoration of energy. PENE is characterized by a pathological low threshold of physical and mental fatigability, exhaustion, pain, and an abnormal exacerbation of  symptoms in response to exertion. It is followed by a prolonged recovery period. Fatigue and pain are part of the body’s global protection response and are indispensable bioalarms that alert patients to modify their activities in order to prevent further damage.

The underlying pathophysiology of PENE involves a profound dysfunction of the regulatory control network within and between the nervous systems. This interacts with the immune and endocrine systems affecting virtually all body systems, cellular metabolism and ion transport. The dysfunctional activity/rest control system and loss of homeostasis result in impaired aerobic energy production and an inability to produce sufficient energy on demand. A test-retest cardiopulmonary exercise study revealed a drop of 22% in peak VO2 and 27% in VO2 at AT on the second day evaluation. Both submaximal and self-paced exercise resulted in PENE. These impairments and the loss of invigorating effects distinguish ME from depression.”


From the International Consensus Primer for Medical Practitioners. 


primer, noun: an elementary textbook that serves as an introduction to a subject of study or is used for teaching children to read: a first-year philosophy primer – OED


Any doctor not aware of this information should go back to the primer and study. Thank you.

Disabled and Dissed



Okay, I admit my main reason for blogging this right at the moment, is to let off steam. But also somewhere in my adrenaline-screaming, fight-don't-fly, tortured brain, I also know that this is not unusual, that other disabled people get this same sort of treatment daily, as a matter of course, so I'll blog it for anyone who might possibly be labouring under the sad delusion that disabled people get "entitlements." But as I confess below, we do get Special Treatment.

Believe me:

Cure me...

And just watch me:

I would gladly go back to work, get a medical plan, and have this whole situation taken care of without going through the "special" channels for disabled people.

But no, we get special treatment.

My daughter has been waiting four years to get her wisdom teeth removed. They are now severely impacted and causing her so much pain.

Three oral surgeons have agreed that due to the nature of her disability, which makes her highly sensitive to all medications, this must be done in a hospital under the supervision of an anesthesiologist - not the usual office procedure - or she could die - so they have referred us on.

The oral surgery department of UCSF agreed to extraction in hospital, but the health plan which administers MedicAid approval (Partnership, whose partnership appears to be with investors, so their purpose is to serve as a strict gatekeeper declining requests for treatment) declined.

So UCSF explained the medical necessity to them via appropriate paperwork and --- there the whole thing stalls, with Partnership telling me to call UCSF, and UCSF telling me to call Partnership, and neither party returning my calls nor those of a case worker trying to help me.

So, I call the Disability Legal Services Center (DLSC) and they say no, call agency B; they help people with MedicAid problems. Agency B says no, we don't do this, we only help with MediCare, so call Agency C. Agency C says no but refers me to a specific person in the DLSC who called me back just now, and said no. Why? Because she doesn't understand the sensitivity to medications, of people with M.E.

She said, "Our lawyers said no because the wisdom teeth have nothing to do with your daughter's disability." She suggested I should call Agencies D, E and F and ask them. (Incidentaly, every stressful phone call is a huge effort for me, and a day where I must make three business/health-related phone calls is a day where I will not have the energy left to cook a meal.)





So I explained the entire thing AGAIN, to this nice lady from DLSC. This time I included the story of my near-death during an out-patient procedure, the anesthesiologist not having believed me when I explained my sensitivity - how painful it was to return to my body, how I opened my eyes to see the anesthesiologist standing at my feet, face white as a sheet, saying, "You weren't kidding: you really ARE sensitive!" and how the medical team then hustled him away.

She was impressed. I will hand it to her: she got it then.

So can I explain directly to the lawyers, myself, so they will see that this is indeed disability-related? She says, "No, it has to go through me." Ahhh, gatekeepers. So she will ask the one lawyer who isn't on vacation, again, before she herself goes on vacation, and get back to me "either way."

Either way?

They will only say no to helping me, if she explains it wrong again.

But I must wait, meanwhile calling agencies (or Little Cats) D, E and F, to explain it to all of them, and depending on their guidelines, mission, funding, staffing, workload and of course cranial capacity and compassion, probably be told once again to move along.

There are always more and smaller cats, waiting in each successive hat.

So I asked, "Okay, meanwhile, do you think I should call the ACLU?" mainly to raise the specter but actually also because at this point I am damn well going to call them. "Because, you know, the other way this seems to relate to disabilities is because ANY person with ANY disability who was getting this kind of run-around might begin to suspect that it could possibly be a case of discrimination, as disabled people whether quadruple amputees or ME patients are all a class of people who experience discrimination."

She can't say whether the ACLU can help me but says it can't hurt to call.

If only she knew how much it can hurt to call, how much it hurts to make any of these phone calls.

Like I said near the top, can I please just be cured now and my kid as well, and get her wisdom teeth out the old-fashioned, non-disabled way, with none of this special treatment?

Okay, on I go with my day, which promises to be an interesting one.

But as I head out the blog door and into the slog world, let me take this opportunity to link once again this potentially life-saving information for people with M.E. who must undergo dental procedures or any type of surgery. Do make sure your dentist and doctor understand this and keep it in your file, and that any anesthesiologist under whose care you come, understands it as well. And good luck getting your insurance company to accept it, too.

http://jada.ada.org/content/137/4/488.full.pdf

http://www.njcfsa.org/anesthesia/

Thursday, July 25, 2013

What Is Myalgic Encephalomyelitis?

 Poster courtesy ME Awareness: Words & Pictures https://www.facebook.com/MEAwarenessPics
ME is controversial because some psychiatrists and drug companies earn piles of money by obfuscating the facts already known about the disease, and by obstructing the finding of any more facts. Despite the Psych Lobby's being in denial, the truth is, ME is classified by the World Health Org as a neuro-immune disease.

The quick explanation full of medical terms: (we return to layman's terms below)

 "Myalgic Encephalomyelitis (ME): complex, acquired multi-systemic disease


Pathophysiology: Profound dysfunction/dysregulation of the neurological control system results in faulty communication and interaction between the CNS and major body systems, notably the immune and endocrine systems, dysfunction of cellular energy metabolism and ion transport, and cardiac impairments.


Cardinal symptom: a pathological low threshold of fatigability that is characterized by an inability to produce sufficient energy on demand. There are measurable, objective, adverse responses to normal exertion, resulting in exhaustion, extreme weakness, exacerbation of symptoms, and a prolonged recovery period."


Above from http://www.hetalternatief.org/ICC%20primer%202012.pdf


So basically we are in pain and our energy is depleted, and the least effort (physical, mental or emotional)  increases our pain and exhaustion.

Typically, we keep trying to return to normal activity, only to be slammed down again and again with "crashes," of this relapsing and remitting disease. On good days, we are in danger of doing too much and exacerbating our illness. Rest is vital, exercise is damaging.

Ultimately we develop holes in the white matter in our brain, nodules on our spinal chords, rare leukemias, cancers and heart disease, and if those don't kill us soon enough we commit suicide.
http://jcp.bmj.com/content/early/2010/10/05/jcp.2010.082032

From those causes we die 20 years younger than average.

http://www.name-us.org/ResearchPages/ResearchArticlesAbstracts/JasonArticles/Jason2005Mortalityfull.pdf
*(see note at bottom re: above-linked study)


Doctors who have treated this and other illnesses say that patients with severe ME are sicker than their patients with cancers or late stage AIDS. Researchers have not found the cause but are pursuing possible retroviral and enteroviral culprits. Genetic predisposition and environmental factors my play roles.

Journalist Hillary Johnson has documented the twisted twists and turns of ME research in her excellent book, Osler's Web,  updating the horror story in this recent Discover article: http://discovermagazine.com/2013/march/17-shadow-virus#.UfFBLW2ZbN

Similarly horrific and more recent developments in the story of research suppression and the silencing of scientists are disclosed in Dr Judy Mikovits book with Kent Heckenlively, Plague.

Misnomers, alternate names and/or related diagnoses: CFS," CFIDS, Chronic Epstein Barr, Chronic Lyme Disease, Gulf War Illness, Fibromyalgia, and more...  Please forgive the use of the misnomer "CFS" in this post. What we're talking about is Severe ME but sadly the CDC clouded the issue by changing the official name, which forced doctors and researchers to use the misnomer, which means we have that "CFS" label to contend with when we quote them. The correct name of the disease is Myalgic Encephalomyelitis.

The most severely ill patients (about 25%) are bedridden, in such great pain, so profoundly exhausted, and so sensitive to light and sound, that they must lie in a darkened room, eyes closed, can't wash or dress, may need assistance toileting, and may need to be tube-fed.

ME patients desperately need help from people with energy to spread this information and do a little advocacy work, and if you can, please contribute to one of the organizations listed in my previous post in this blog: http://itsonlymeitsnotmymind.blogspot.com/2013/07/wanna-donate-to-help-patients-with-me.html



*Note setting the record correct re Mortality Study
In respect to the four victims in the Mortality study it must be noted that while the findings of damage to patients are sound, the study linked above contains disinformation. It described the second of the four victims (Sophia Mirza) as having refused to eat and drink and refused medical care. That's refuted in this ME Association link http://www.meassociation.org.uk/?p=3765  as follows:

The following information was supplied by Mrs Criona Wilson, mother of Sophia Mirza, on 24 January 2011:

“The 2nd person, a woman aged 32, (Sophia Mirza) was reported to have refused to eat and drink. She was supposed to have refused to see a doctor.” Both of these statements are incorrect.

“The doctors had treated Sophia, who had severe ME, as being mentally ill, despite the fact that The World Health Organisation states that it is a physical disease. They forcibly sectioned her in a mental hospital. Having been released from there by a tribunal, her doctor removed her from that practice. The doctor in the second practice told me that ME was a mental illness and that she let patients ‘get on with it’. Sophia was terrified of calling on that doctor, as previously it had been made clear to her that she could, once again, be ‘sectioned’. Because of her severe symptoms she was unable to eat or drink, save for a minute amount. After she died the doctor refused to visit to confirm Sophia’s death. Apparently they too had removed Sophia from their practice, four months previously and without our knowledge. There was no help for Sophia.

“Sophia had to suffer in unbearable agony and die alone. To infer that it was Sophia’s ‘free choice’ is not true. Being frightened of the doctor and being unable to eat or drink are totally different from refusing to see the doctor and refusing to eat.”

Críona Wilson (Sophia Mirza’s mother) www.sophiaandme.org.uk "

Wanna donate? To help patients with ME and other Neuro-Immune Diseases...


Below is the work of a fellow ME patient: the activist extraordinaire and captive unicorn Lilan Patri. She knocked herself out, pretty literally, pulling this together for us all: some organizations endorsed by Actual Patients, and worthy of your support. Please, do help. - Creek


Lilan Occupies Her Bed. The excitement is palpable. (Yellow police tape marking protest area)

Wanna Donate? Some ME/CFS Options

16 July 2013 at 19:11
Hi Good People,

Recently a friend asked me how she might best make a contribution toward ME/CFS research. Having been somewhat out of the loop, I posted on FB for suggestions from fellow patients. I was surprised how few I got, but then... not surprised. Two years ago, the ME community put all its faith in the WPI and its XMRV research and worked tirelessly to fundraise. Then, oh my God, the WPI turned into a BIG HOT MESS--and since then many patients I know have been hesitant to throw themselves behind any one organization and downright leery of soliciting donations. But I still get people asking me. So I compiled the suggestions I did get, and I snooped around online to check them out, and I made a list.

Let it be known: I am not a scientist. I do not have a brain for facts. I do not understand a good half of what I read on these research sites. I cannot predict which institute will go up in flames. What I wrote might be exquisitely inaccurate. I am not an authority on anything (except probably housebound loungewear and my cat Leopold). I also might have left off the BEST organization EVER.

Okay, good. Now, these places, I think, might be worthy of donations. A few research institutes (my top picks first) and, to sate all appetites, a few advocacy groups below.

Thanks for caring enough to read this far. And thanks to anyone who feels like donating.

Snuggles from Berlin,
Lilan


Research Research Research

SIMMARON RESEARCH (USA)
http://simmaronresearch.com/

The highly regarded brainchild of the highly regarded Dr. Dan Peterson, who has been treating and studying ME/CFS patients in Incline Village for over 25 years.

"Simmaron Research is a nonprofit organization dedicated to advancing scientific research, potentially leading to the discovery of diagnostic markers and effective treatments that will ultimately improve the quality of life for people suffering from CFS/ME and related neuroimmune disorders."

Simmaron implements a multidisciplinary approach (immunology, virology, genetics, exercise physiology) and cites as novel its collaboration with leading scientists worldwide as well as a repository of biological samples and data records from nearly 3 decades worth of patients.

Simmaron is now seeking donations for two new studies: Arthropod-Borne Disease in Post-Infectious Fatigue; and Prevalence of Clonal T-cell Receptor Gamma Gene Rearrangements in CFS Patients with Herpes Virus Infections. Ongoing studies include (among others) pathogenic mechanisms of ME/CFS,  cytokine abnormalities in spinal fluid, and multi-site clinical assessments to establish subsets of ME/CFS patients. Please check the Website for more details. Gamma gene rearrangement?! I know nuffink.


OPEN MEDICINE INSTITUTE (USA)
http://openmedicineinstitute.org/

With much focus on clinical and genomic data and biomarkers, OMI appears to be another scientifically advanced contender. OMI spreads its reach to a range of (challenging) illnesses.

"The Institute is currently focused on understanding, developing treatments, and finding cures for neuro-immune diseases including ME/CFS, Autism, Multiple Sclerosis, and other conditions [Lyme]. There are also plans to apply the Institute’s model to a range of diseases including cancer and Alzheimer’s—diseases which have proved difficult, if not impossible, to decode and treat using today’s standard approaches."

In regard to ME/CFS, Open Medicine's priority is the multi-pronged OMI-Merit Initiative, which includes trials of Rituximab and Valcyte (alone and in combo), the development of an international Neuro registry and Biobank (data sampling), assessment of the efficacy of viral testing, of current commonly used medications, of natural and OTC substances--and a whole lot more. All on the fancy Website.



MT. SINAI ME/CFS CENTER (USA)
https://www.facebook.com/DrEnlander

This center is in its infancy. There's no way to know its efficacy. Eh, I'm including it anyways: I like the initial study, and Dr. Derek Enlander has good cohorts on board plus the backing of a major medical school/ hospital. There's potential here. Let's see if this baby flies.

"The ME/CFS Center at Mt. Sinai is currently conducting a Post Exertional Malaise trial, due to be completed this year. The ME/CFS Center at Mt. Sinai has made it clear that they are interested in collaborating with other institutions in the pursuit of concrete research into this illness."

The current effort would be (perhaps?) the first large-scale study to demonstrate the detrimental impact of exercise on ME/CFS patients, and could potentially debunk the (bunk) UK PACE trial of 2011, whose (bunk) outcome further inculcated the (bunk) treatments promoted by the CDC... and every other governmental body everywhere.

Donations:

Checks made out to Mt. Sinai Medical Center, with Fund Number 02855525 specified in the Memo section and mailed to:

Mt. Sinai ME/CFS Center
860 Fifth Avenue
New York, NY 10021



Advocacy, Awareness, Treatment

NEUROIMMUNE ALLIANCE (UK)
http://www.neuroimmunealliance.org/donate.php

An education and advocacy group whose most pressing goal is to open the first clinic in West Sussex with a multidisciplinary approach to ME, and serving the severely afflicted. West Sussex has one clinic for over 4000 ME patients, where no drugs, no supplements, no blood tests and no treatment other than a few group therapy sessions are given.

Beyond this, the Alliance's aims include training programs for GPs, reassessment of all patients using International Consensus Criteria, and reorganization within the UK medical system such as the shift of ME/CFS services from mental health to neurology.

RESEARCH: The Alliance also hopes to study methylation and glutathione depletion  in patients with toxicity, Gulf War Syndrome, ME, and in World Trade Center recovery workers.


PANDORA (USA)
http://www.pandoraorg.net/

A grassroots organization devoted to building awareness about neuro-endocrine-immune diseases (ME/CFS, fibromyalgia, tick-borne infections, multiple chemical sensitivities / environmental illness, and Gulf War syndrome) and advocating for better government policies pertaining to these diseases.

"Our main goal is to improve patient quality of life, which includes direct assistance and increasing access to knowledgeable healthcare. This is done through medical professional educations and working toward creating an NEI (neuro-endocrine-immune) Center."


CHANGE for ME (Australia)
http://www.changeforme.net/
https://www.facebook.com/changeformeaustralia

Founded by my friends Lee Lee and Amara and based in Australia, Change for ME has in its short history staged a live event (a major coup for the bed-bound!) and spread the word online. Without awareness, there can be no change: this is its philosophy.

"We advocate for greater understanding of the condition in the medical community and general public; increased support and medical access for ME and CFS sufferers to help address the poor quality of life and elevated risk of suicide; more equitable financial support for sufferers through Medicare and PBS."

Saturday, May 25, 2013

Gaudy Gloriosa

Once I wrote longer things. These days I can sometimes write a poem. One of my ME buddies took this photo. I saw it and said hey, I've got a poem that goes with that. Nifty - not only can we still be creative, we can still collaborate.

Tuesday, May 14, 2013

The Wilderness Settlement



Lost alone in vast wilderness
blasting winds casting me past
one withered trunk
looking like the last withered trunk
another or the same
barely discernible in blizzard blindness –

yes, I remember that
it was all that bad,
that bad
and more
do you remember?

till we beat our fists and howled
curses against any surface
withered trunk
frozen ground
our own skulls
available to take
the pounding of our helpless rage –

how we found one another
sheer dumb luck
on that cold frontier
through vast blasting unknown
stumbled
one to the next
grabbed hold of the next
clung together
do you remember?

to form a colony was bliss
the occasional dispute inevitable
but together
never again alone
our survival depended
one to the next
on the comforting compromise
of
settlement.

(for my comrades in illness)

Thursday, February 7, 2013

Myalgic Encephalomyelitis ("cfs") Patient Continues Hunger Strike


To: kathleen.sebelius@hhs.gov, margaret.hamburg@fda.hhs.gov, janet.woodcock@fda.hhs.gov, sandra.kweder@fda.hhs.gov, howard.koh@hhs.gov, ash@hhs.gov, 511bobmiller42@gmail.com

cc: Senator Diane Feinstein, Senator Barbara Boxer, Representative Mike Thompson

Long-time ME/cfs patient Robert Miller from Reno, Nevada began a hunger strike on January 29th.

Already severely ill, he is undergoing this painful and debilitating protest to call attention to the shocking neglect by government health agencies of millions of people suffering disabling pain with this disease.

Robert Miller, ME activist on hunger strike.

Miller began his hunger strike in advance of a recent FDA decision to disapprove a medication, Ampligen, that could salvage countless lives, allowing a return to productivity for people currently totally disabled. The strike extends beyond the fight for Ampligen approval, however, and encompasses the international issue of neglect and harm to ME patients.

Is it really necessary to shame into action, agencies pledged to address public health issues? Sadly, yes. Here in the US, our Centers for Disease Control and NIH have not only neglected but actively harmed M.E. patients since the 1980s:

- millions of dollars earmarked for ME were diverted and misspent.
- the disease was given the denigrating name "cfs" and patients were mocked in internal memos.

- the disease was relegated to the ghetto of Women's Health although it effects millions of men, women and children, causing pain and disability comparable to that in terminal cancer or late stage AIDS.
- government websites published misinformation including treatments that were not only useless but harmful to ME patients.
- ME patients continue to receive neglectful or harmful treatments and lower levels of funding and support than similar or less-severe illnesses.
- ME researchers have been discouraged and even hounded away from their studies in an academic and scientific atmosphere belittling and defaming their efforts.
- all this neglect and mismanagement has occurred in spite of strong evidence that the disease is communicable.

In the US and elsewhere, ME patients have been forcibly institutionalized, including young sufferers taken from their parents, and subjected to mistreatment regimens that have resulted in their more severe illness and even death.

The very identity of the disease or diseases encompassed in a diagnosis of "cfs" or ME is in question, due to the paucity of designated funding and the poor spending of what research dollars are allocated, often on inappropriately designed studies. A diagnosis of "cfs" may as easily fall upon a patient infected with Lyme disease, or suffering from Gulf War Illness, Fibromyalgia or a range of underfunded, understudied and therefore ill-defined Neurological, Endocrine and Immune Disorders.

Sufficient appropriate studies simply haven't been undertaken to even identify the entity or entities wreaking havoc in millions of lives and causing uncounted deaths. We die of heart disease, cancers, leukemia and suicide twenty years younger than average and the cause of our death is usually misreported, going unlinked to the root illness.

Shame on our health agencies. Their ignoring of this illness allows it to spread farther and ruin more lives daily. This horror must be stopped.

Robert Miller elicited a promise for action from President Obama. We are waiting...


We demand that you take this disease as seriously as it takes our lives. Robert Miller is suffering terribly, today, to bring public attention to - and outcry against - decades of suffering by millions of patients.

Sincerely,
Kathleen Fatooh

 Additional actions:

- please write a note of your own, long or short, to the agencies in the TO section above and your own representative
- tweet about this and retweet Robert's wife, CourtneyA999
- share this and other notes, videos, statuses and updates on Robert Miller's hunger strike
- join this Facebook "event" to support his effort and check in for updates and further actions feel free to - -
- copy/paste and send as your own, copy it to media people, share, distribute widely - I am SO SICK after the effort of writing this, it's all I can do for now, so I totally get it if you can't write one of your own but please do share. Thanks!