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Talking with CFSAC - Views from the other side of the table

Discussion in 'Phoenix Rising Articles' started by Mark, Aug 19, 2013.

  1. Mark

    Mark Acting CEO

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    Sofa, UK
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  2. Mary Schweitzer

    Mary Schweitzer

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    Those were interesting interviews. Thank you for providing them, in this forum.

    But nothing that has been suggested for patient advocates hasn't already been tried. CFSAC was not the first committee. That was the CFS-ICC (CFS Interagency Coordinating Committee), created sometime around 1990. My own experiences start with the CFSCC, or CFS Coordinating Committee, which began life in (I think) 1996. With both these committees, there was a microphone in the middle of the aisle, and public attendees were permitted to ask questions - specifically, to ask questions of the government representatives after they gave their presentations. It has been very frustrating to have had that shut down in CFSAC - why bother to go when you're gagged, forbidden to correct an error or ask a question, having to listen to the same public reps say the same things over and over? [They did allow questions at the last meeting, though you had to submit it in writing and could not ask directly.]

    We used to get ten minutes - now it's five. They'll waste 20 minutes just talking among themselves about whether to go on break or not, when there's a really sick patient waiting to testify and about to pass out, and when the patient does testify, apparently no understanding that a slow, halting delivery is part of the disease - so timing it exactly to five minutes is kind of cruel.

    Right now almost all of the speakers DO have a common agenda. First of all, we need much more funding by NIH. MUCH more funding by NIH. But NIH has a ready answer to that, which hasn't changed since 1996 (my first meeting): Oh, "NIH has plenty of money for CFS research, but we don't get enough good applications. We'll be holding a seminar for how to write an application next month." [Never mind that seasoned researchers like Robert Suhadolnik of Temple had no trouble getting funding for OTHER projects.]. It's really an insult, but they say it every meeting.

    Everyone also agrees that the CDC website HAS to change. Or be deleted - it's that bad. It recommends CBT and GET (cognitive behavior therapy and graded exercise) as the only accepted treatments for CFS (!). When asked to get that off the website - particularly the exercise part, particularly given the results of VO2 MAX exercise testing by Chris Snell who was chair of the committee for a while, Dr. Unger of CDC flatly refused, even got angry (unusual for her) - "There's lots of research behind CBT/GET" she insisted. Okay, if you want to keep it, how about including the OTHER research that would suggest it's dangerous? "We direct people to Medscape - we can't put everything that was ever written on the website."

    And it's a MYSTERIOUS condition. We really can't do anything without a biomarker. No, NK cells, cytokines, the Rnase-L defect, EBV, HHV-6, exercise testing - no, none of them are proven to diagnose CFS. We only wish it were true.

    What a crock.

    The chair does set the tone - the best chairs we have had were Donna Dean at the end of the 1990s, and in the 20-00's, Dr. Oleske, Dr. Bell, Chris Snell, Wanda Jones. Great recommendations. Never read. No response, except once every government agency had to say in what way they were adhering to the recommendations - boy was THAT a boring meeting. So much double-talk. And we had to listen in silence, unable to challenge a single statement or ask a single question.

    I live 90 minutes north of Washington, by train, so I try to go to every meeting. I testify at every one of them, except when I got way too sick off Ampligen - that is, bedridden. I've been there in a wheelchair, lying on the floor for most of the meeting, putting everything I had into my five minutes, and collapsing after speaking. I think it's good for them to see really sick patients. Most of the government reps (and apparently our new CAA rep) know next to nothing about this disease - because you don't if you haven't lived it, either as patient or caregiver. Maybe you can learn, but you'd better be a very good listener.

    The suggestion that they all watch the documentary "Voices" is excellent. I once gave them copies of the book that preceded the documentary. I wonder how many read it.

    So we all agree that (1) we need more research funding from NIH - 100 times what we are getting, and I say that in all seriousness; (2) we need CDC to either put up a professional website that represents the depth and breadth of research on this disease, and the experience of long-time clinicians (which is how the Canadian Consensus Criteria were written) - or get rid if the website entirely. Better no information than information that will make patients sicker.

    And (3) we need a sense of urgency. Above all else, URGENCY. CDC itself admits that of one million patients, 850,000 have no diagnosis. Six out of seven have no diagnosis. That's pretty pathetic after 25 years. As for the 150,000 who do have a diagnosis, with only a handful of specialists (as Dr. Levine aptly noted), well, it's at best 15,000 patients to one specialist, pretty bad odds.

    Most of all, we need URGENCY before another generation is lost to this condition. There are patients who got sick at 18 and are still sick in their 40s. HOW CAN WE LET THIS HAPPEN AGAIN? At the least, it should be a reported diagnosis. At the least, with what we already know, we have to keep close tabs on young people who come down with EBV - this isn't "chronic EBV," but there is a connection, at least in a very large subset.

    The late Bill Reeves once told me that CDC couldn't go public with the severity of this disease until they could tell people how to keep from getting it (!). It would cause panic. Really? How do you keep from getting MS or cystic fibrosis?

    With everything patients and caregivers have been through, no one should be telling them how to testify. Listen to us instead.
    jimells, heapsreal, RL_sparky and 6 others like this.
  3. Purple

    Purple Bundle of purpliness

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    The film is 63 minutes long - the length of 13 patient testimonies.
  4. Sasha

    Sasha Fine, thank you

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    Welcome to the forums, Mary. Great post! What do you think is the best way to achieve this? What should patients be doing for the next meeting? Trying to push for those first two points (the specific, actionable ones)? Boycotting the meeting? Writing to committee members before the meeting? Writing to the people further up the chain who have failed to implement actions?

    If there was a clear target for advocacy there, I think there's the potential for a mass action campaign by patients.
    Nielk and Kati like this.
  5. Sparrowhawk

    Sparrowhawk Senior Member

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    This was all very well put and good to understand more of the history, thanks.

    I was wondering if we could contact this author -- who has done a lot in the last few months with this article to mainstream what has been considered a very marginalized disease of Lyme. Perhaps a follow up article interviewing some of our major CFS/ME practitioners and their theories (like enteroviruses). Thoughts? Is there a patient advocacy group that woudl take on contacting the author?

    http://www.newyorker.com/reporting/2013/07/01/130701fa_fact_specter

    Thanks.
  6. Erik Johnson

    Erik Johnson Senior Member

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    For so long as CFS advocates make the case that "CFS" was based on nothing and is just a generic term based on nothing, the CDC has them beaten.
    No matter what is every found, all this does is place any new finding in jeopardy of having the patient removed from the CFS category, should it prove to be "real".

    The only possible way to overcome the CDC's perpetual "We always win-You lose" stalemate is to point out that the syndrome was brought into existence due to original evidence compelling enough to create a syndrome, but apparently not good enough to keep researching until they found out what it meant.
  7. Erik Johnson

    Erik Johnson Senior Member

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    It is disgusting and contemptible to see "CFS" continually represented as "Having no abnormalities"
    In 1987 after years of fighting to say "tests are inconclusive", the CDC caved in when they saw this.
    They changed their tune and announced the creation of a new syndrome to study this.... and the other evidence described in Osler's Web.

    It takes real gall for them to misrepresent the situation such that their definition is the real "CFS" but the illness it was based on is NOT.

    --------------------------------------------------------------------

    North Lake Tahoe Bonanza

    Nov 16 1987

    "Incline Victims Show Cell Abnormalities"

    Tests Reveal New Clue in Fatiguing Illness

    by Chris Fotheringham
    NLTB Managing Editor

    Laboratory results published this week in a prestigious medical journal confirm that over 50% of Incline Village chronic fatigue patients tested have suffered "dramatic" abnormalities in their immune systems.

    Calling it the "most significant finding yet" in efforts to unravel the mystery of the widespread fatigue illness, Harvard researcher Dr. Anthony Komaroff said Monday the report published Sunday in the Journal of Immunology is the first scientific study that confirms "something is wrong with these people."

    "it is really dramatic." said Komaroff, who is chief of general medicine at a Harvard teaching hospital in Boston.

    The article, which underwent nearly 11 months of peer review before being published, was authored by Komaroff, Incline Village internist Dr.Daniel Peterson, and former Incline internist Dr Paul Cheney.
    Dr Michael Caligiuri, an immunologist with the Dana-Farber Cancer institute of the Harvard Medical Center, was the lead author for the article which was originally submitted for review in January.

    Komaroff says test results reveal an attack on the immune system's "natural killer cell" which is the body's primary means of killing virus-infected cells or cells that become cancerous.
    Komaroff said "There is a substantial reduction in the number of natural killer cells in patients tested." He said the study has determined that this "major defense against virus infection and cancer" is damaged in over half of the test cases involving Incline Village patients.

    Komaroff first broght his team of researchers to Incline Village in February of 1986 after Incline doctors Cheney and Peterson had documented an outbreak of approximately 200 cases of mononucleosis-type illnesses in the North Tahoe and Truckee area beginning in the fall of 1985.
    While the Incline Village cluster of fatigue cases has drawn primary attention in the national media, researchers have found widespread occurrence of the illness throughout the country.

    See TESTS on page 9.

    http://www.ncbi.nlm.nih.gov/pubmed/2824604
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  8. jimells

    jimells Senior Member

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    And yet twenty-five years later it is still impossible for most patients to even get this test, simply because doctors refuse to order it.
    Kati likes this.
  9. Erik Johnson

    Erik Johnson Senior Member

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    Precisely. By rushing to base the 1988 Holmes CFS definition on the work Gary Holmes had done UP TO THIS POINT, this abnormality could be omitted, since it had not yet passed peer review.

    In this way, the syndrome could be "officially" lacking in abnormalities, even though this evidence was among the very reasons the CDC abandoned CEBV Syndrome and created CFS.

    By a simple switch in the "playing field" which makes people conceive of CFS as a definition in search of abnormalities, instead of a research tool to study them.

    This was switched to "speculative".

    The finding of which actually threatens to "Remove someone from the CFS category", if it should prove to be important.

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