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Can I get feedback on my proposed CSFAC Testimony?

Discussion in 'Action Alerts and Advocacy' started by JanisB, Oct 13, 2009.

  1. JanisB

    JanisB Senior Member

    Central Ohio
    Here's what I plan to say. Let me know what changes I should make. I have until tomorrow noon.

    I was a distinguished art historian, a Fulbright Scholar who received grants from federal agencies such as the NEA and NEH, who served on a granting board of the NEH, and who received numerous awards from private foundations.

    I came down with CFS on May 2, 1987. In addition to the onset of classic physical symptoms of sore throat, low grade fever, dizziness, and muscle weakness, the cognitive effects of the illness were immediate. I developed paraphasia -- pointing like an idiot at forks and bowls because the words for common objects wouldnt come to mind -- and I found it difficult to organize ideas. The article I wrote for publication that summer rambled on so that it was the only journal article I ever had rejected.

    The neurocognitive effects of the illness continued over the years, worsening at the end of the first decade. Math had been my top subject in high school, and my math SAT score had been 760 out of 800. As CFS advanced, I found myself unable to do simple arithmetic. I also lost skill in visual recognition -- skills that had made it possible for me to ace art history courses and get my doctorate--testing in the 14th percentile in 2005, at a time when my symptoms had partially abated. I had once been the Department Chair and could no longer organize a few files in my home.

    For a long time I struggled with depression at the tremendous losses Id suffered -- loss of career, loss of the ability to lead an active life, loss of competence in many tasks. Eventually, working with yoga, meditation, and natural forms of medicine, I was able to make peace with my restricted life and find joy in the simple tasks of living.

    My healing journey of 22 years is a modern odyssey. I have travelled to California and New York, Mexico and the Caribbean, exploring protocols of mainstream physicians and protocols of holistic practitioners. Some protocols helped me make substantial progress towards recovery; others caused me to worsen, often creating a ripple effect that continued to shimmer for several years. But when I compare myself to many of the non-working afflicted on the internet forums dedicated to ME and CFS, I know that I am one of the lucky ones. I had the research skills and the brain power to dedicate myself to studying human physiology, homeopathy, herbs, and nutritional supplements. This knowledge has made it possible for me to control my symptoms (and control is the operative word) so that I no longer suffer with the ups and downs of passable days and bad days which torment the lives of my friends. Ive also had the financial resources to explore acupuncture and other healing modalities.

    Because of my relative success, Im asking the CSF Advisory Committee, to give more attention to nutritional interventions. The pharmaceutical companies have plenty of incentives to develop drugs for CFS, given its estimated prevalence between one to four million Americans. We need YOU to undertake the kind of research that private companies have no incentive to undertake. There is serious and enthusiastic discussion on internet forums about several protocols which have alleviated symptoms in numerous individuals with CFS. Some individuals have improved substantially enough to return to the work force. Others have reduced suffering, doctors visits, complications, and costs. Here is a brief list:

    1. Vitamin B-12. People report success taking only the active forms, adenosylcobalamin and methylcobalamin, while avoiding the inactive forms of cyanocobalamin and hydroxocobalamin. We need more research as to why cerebrospinal fluid shows low B-12 while serum B-12 levels are normal, when MMA is the most accurate way to measure functional need, or whether the new tests of transcobalamin are more accurate.

    2. NO/ONOO People report success taking specific antioxidant supplements designed to scavenge peroxynitrate according to the theory advanced by Dr. Martin Pall. His theory and protocol need further clinical testing.

    3. Methylation and reduced glutathione. Dr.s Van Konynenberg and Nathan did a preliminary study of 60 individuals with CFS whose energy improved substantially after less than a year on their protocol of unusual supplements. Instead of using synthetic folic acid, they directly employ substances active in the folate cycle such as 5-methyltetrahydrofolate and folinic acids. They have documented through serum testing the normalization of reduced glutathione, SAMe, SAH, adenosine, and various active folates. Some study participants recovered sufficiently to return to the work force.

    4. Amino acids therapies, particularly intravenous administration of amino acids, has helped those with low serum and tissue amino acids despite adequate dietary intake.

    5. All people with CFS have abnormalities in Krebs cycle metabolites, most at the aconitase enzyme. Through studies or increased monitoring of organic acid testing -- available through US laboratories such as Genova, Great Plains, and Metametrix -- we might be able to discover patterns revealing how this illness actually decreases the capacity to make adequate ATP. That could lead to interventions that increase energy substantially enough to improve quality of life and return many individuals to the work force.

    6. Dr. Sarah Myhills study of mitochondrial dysfunction and Dr. Kenneth De Meirleirs study of increase H2S in persons with ME/CFS deserve further study in the U.S.

    7. To control costs, we need to stop turning natural nutritional products into drugs just because a pharmaceutical company wants to market it. This has happened in the past year with BH4 (tetrahydrobiopterin) and a natural, active form of Vitamin B. Restriction of products that have been available for generations is contrary to the principles of a democracy and the free market system on which our country grew to international prominence.
  2. This sounds like what I had put in one my testimonies, which is the CDC should do studies evaluating the existing protocols, so we the patients have a scientific basis on which to choose protocols, instead of spending much money and time (as you have) trying various protocols in the hopes of making some progress.

    Also you should mention that when they evaluate the protocols or do studies, they need to *not* be using the existing weak CFS definition (the Empirical Definition), which identifies those with major depression as having CFS 38% of the time. The problem is, they are not studying our illness if they use this definition.

    My personal preference is to use the Canadian definition of CFS, so that's what I request in my letters.
  3. JanisB

    JanisB Senior Member

    Central Ohio
    Thanks. I made some changes. I wish I could believe it will make a difference. I guess if enough people keep saying the same thing, eventually someone will listen.
  4. Dolphin

    Dolphin Senior Member

    Yes, it'd be great if you could add that. If it gets repeated enough, it's harder for them to ignore.

    One small typo: CSF Advisory Committee - should be CFS

    It'd be great to have things tested pharmaceutical companies won't test. I have got frustrated before when some people including doctors didn't seem to realise that large double-blind placebo-controlled trials for supplements are rare(ish) because there's no pharmaceutical companies who have the money. People seemed to believe that "absence of evidence" (of benefit) implied "evidence of absence" (of benefit)
  5. zoe.a.m.

    zoe.a.m. Senior Member

    Olympic Peninsula, Washington
    Wow, an impressive letter written by an impressive mind!

    I really enjoyed reading your history and I think of all of the specifics you used are marvelous. I changed my letter to include some discussion of the financial strain after I read your letter.
  6. JanisB

    JanisB Senior Member

    Central Ohio
    A heartfelt THANKS to everyone who replied.

    I wish I had time to read everyone else's letters.... The 3x a week I.V.'s I am doing turned into 8 hour ordeals this week and I've got to get myself out of here and down to the clinic ASAP. Too bad Doc doesn't have a computer terminal for patients in his place.

    Hope to meet lots of you next week in D.C.
  7. kolowesi

    kolowesi Senior Member

    Central Texas
    JanisB sorry I missed you

    Best of luck with the IV's.

    Thank you so much for the impressive testimony. Many very important points.

    And also for attending the meeting, I know it will be a strain.

    Thank you thank you thank you!

  8. Lisa

    Lisa Senior Member

    Western Washington
    Good Janisb! :)

    Great letter by the way! :D

    Lisa :)
  9. Andrew

    Andrew Senior Member

    Los Angeles, USA
    I think it's great. One thing to consider, though. People unconsciously look for reasons to disbelieve. It is hard for people to imagine how a profoundly sick person can do extensive research and travel to other countries. I find it helpful to connect these dots for people by throwing in a few sentences.

    For example, would anyone here know from seeing my message how I struggled to type this, how I am getting sicker by the minute just trying, and that I'll have to go lie down when I'm done. Or that half of my attempts to write here are never completed.


    Dear Janis,
    Are you providing your testimony in person or by phone? I am trying to get a confirmed list of everyone who is providing testimony in person. Please let me know.
  11. The Phantom

    The Phantom Member

    near Philadelphia
    Hi Pandora,

    I think Janis' testimony must be written, because it seems like it was submitted by October 14. Am I right, Janis?

    I'm providing testimony in person. I emailed CFSAC to try to get a list of who is presenting testimony, but they haven't replied.

    As I understand it, you're going to present Tom Kindlon's online petition about getting rid of the Reeves definition. Is this true? I'm posting the following in a number of places on this website to try to get some more signatures on the petition--it would be great if there were 2000+. More would be even better. Anyway, this is what I'm posting:

    One of the most important reasons Reeves must go is the Reeves (2005) "empirical" definition. He's publishing research using this definition, even though it's unverified. The original paper introducing the definition is a scientific disgrace. Anyway there's still time before the CFSAC meeting (Oct. 29-30) to sign the petition against the Reeves definition. I sent out the following email to a number of friends & relatives and got 15 or 20 signatures. I added a personal note to each and then said:

    By the way, I'm emailing everyone I can think of to see if anyone is willing to sign a petition about the definition of Chronic Fatigue Syndrome (which I, along with many other people, call Myalgic Encephalomyelitis or ME/CFS). It's a pretty esoteric thing to have to have a petition about, but, unfortunately, it's important. Basically, since there's now a lot of data about infectious and other possible causes for CFS, in 2005 Dr. Reeves of the CDC decided to redefine it (CFS) so it would better fit his theory of a psychological cause. Dastardly! Anyway, there's an online petition against the definition. It's a bit of a slog to get through: there's the petition, then there are references, then there's an explanation, then there are a bunch of additional notices, then there's the place where you "sign". They do want your email address, but you can check a box saying you don't want to be notified about any additional related petitions, and I've never been spammed by them to my knowledge. You can also check a box if you don't want your name showing up on the internet. It only takes a couple of minutes.

    You may have heard about the new data that suggests that ME/CFS may be caused by a retrovirus called XMRV. Given that a retrovirus was suggested as the cause in the early 90's but rejected by the CDC, a lot of people think this is a good time to discuss why the science has been so bad. Hence, the petition. If you want more information before considering whether or not to sign, call, email or shout loudly and I'll be happy to explain further. If you know anyone else who might be willing to sign it'd be great to pass it along.

    Here's the link:

    Please feel free to copy this statement, add to it, change it, use it in any way you want. But, if you can, please send it to anyone you think might sign. By the way, thanks to Tom Kindlon who wrote the petition, and no offense meant about it being a bit of a slog--it's a great petition with everything there people need. But it is an issue that's a bit difficult for people to understand if they're not directly affected by it. I just wanted to be sure people made it to the bottom and SIGNED.
  12. Dolphin

    Dolphin Senior Member

    Best of luck with the presentation

    (repeating what I said in the other thread):

    Great work, the Phantom.

    I'm quite happy for people to describe the petition and the page in derogatory terms if it helps gets signatures!

    I even tried to make a virtue out of it in my written pieces to this and the last CFSAC meetings, saying it wasn't exactly a very exciting petition so I was pleased with the amount of signatures I got, etc.

    I also deliberated tried to make it factual and not to personal so people could have few excuses for not signing it. There may be a place for a petition such as "Reeves must go" or whatever but some people including probably many PhDs/MDs might be reluctant to sign that. I didn't want to lose any of my audience with this one.

    I was wondering whether to write to the CFSAC committee again before the next meeting - if I got 50 to 100 more I might do it (if it went over 2000 I would definitely do it). I did that last time when the number who had signed it jumped from 600-odd (when I sent in my testimony) to over 1000 i.e. I E-mailed all of the CFSAC members (except one whose address I couldn't find) to update them on the current total - they might not have got any other E-mails as their E-mail address aren't really given out (I just found them by searching). At the moment it has gone up from 1641 to 1745 but I'm not sure that is enough to justify another E-mail.

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