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Article: The Committee on Itself: the CFSAC Comittee on XMRV, the CDC, Its Charter a

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, May 13, 2010.

  1. Phoenix Rising Team

    Phoenix Rising Team

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  2. Robin

    Robin Guest

    Thanks, Cort!

    I've often suspected that the basic science (regarding detection) isn't fully understood. It sounds like they're actually doing the groundwork that needs to be done, unlike the researchers in the UK, Europe, and Cooperative Diagnostics who used a template approach. This is a relief.
     
  3. Cort

    Cort Phoenix Rising Founder

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    Yes - they're definitely digging deeper. Dr. Vernon said she thinks they will come to a clear conclusion about XMRV; which I took to mean why the earlier studies failed if XMRV turns out and what went wrong if it doesn't.
     
  4. CBS

    CBS Senior Member

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    Cort,

    I'm repeatedly amazed at all that you do for the CFS community.

    Thank you.

    You mean like ... stopwatch important?
     
  5. Cloud

    Cloud Guest

    "she (Dr Unger) agreed that it was a decidedly bad thing for the research community to split apart on how to define ME/CFS" .........

    Ya think! I wonder if she has a clue how that came about. But then, is a fish aware it's in water?

    Otherwise, the meeting sounds hopeful. Thank you for the report Cort.
     
  6. _Kim_

    _Kim_ Guest

  7. sunlady

    sunlady Guest

    Like in the Utah/Bateman study?
     
  8. Cort

    Cort Phoenix Rising Founder

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    :D:D:D

    Only in Utah :cool::cool::cool::cool::cool:
     
  9. Cort

    Cort Phoenix Rising Founder

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    She is in the CDC water....we'll see how things go. Of course Suzanne Vernon took a sharp right (or maybe left) after she left the CDC. Elizabeth Unger seems less likely to rock the boat but who knows....
     
  10. CBS

    CBS Senior Member

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    Yes, it takes a very perceptive fish to know it's wet!
     
  11. Cort

    Cort Phoenix Rising Founder

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    I meant to say
    .

    She did not strike me as someone to overturn dogma but who knows. Dr. Vernon certainly went her own way after she got out. Can someone do the same from the inside? We may get small changes at best.
     
  12. Revday

    Revday

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    Not so much.

    Cort I appreciate the work you do. Your reports are informative and even uplifting. I don't have that agenda or energy and I am trying to live with this colossally devastating illness that day by day takes more away from me. I am scared but more then that I am disgusted with those who should know better. Not angry with you Cort but the experts who can't find an agenda when it's handed to them.

    So, I sat through just about all of the video of the morning meeting. I finally had to turn it off. Perhaps I might be unmeasured in my responses. And Iv'e never been accused of being politic in my interactions with "authority figures". My brain isn't working so great and I got confused on who was speaking. All that aside the CFSAC clearly demonstrated why nothing gets done. There is no central mission or mission that is central for the group. After 20 + years?!!! As a group I found them disorganized and, well, lame. At least in the process of developing focus and an agenda. I've been in plenty of agenda setting meetings and that meeting didn't look like one to me. I know that there were participants who were really trying to accomplish something, like a focus. Or a blood ban resolution. I have to give them credit. It looked and sounded like they were fighting a predetermined battle to slow or obscure the process down. But they won the blood ban statement. Yea! Dr. Jason is my new hero.

    I'm too sick and tired to listen them again. Help me out here, I don't intend on spreading rumors but I thought I heard the new CDC "acting" director throw wrenches in the works when conversation turned to a blood donor ban. Was that her? Why would the woman who spoke use a connection with CFS and XMRV and wither it is even real or, "unproven," in discussing the health interests of millions of CFS sufferers and the risk of blood contamination for the population at large? Does being fully accurate or saving face trump peoples lives? I know the answer to that. I heard another Dr. or man echo the same argument. I also listened carefully to what the CDC Director was saying in the individual interview and I found her very carefully protecting the CDC and sounding supportive at the same time. I heard hedging and vague remarks that can give hope without making any commitment at all.

    I'm sorry I don't feel optimistic about the assistant secretary of health showing up either. He seemed to do some glad handing and then really needed to rush out. Looked and sounded like a political feel good show and nothing more. You know like: everybody is wonderful, and I don't know anything about CFS, it's so great to be here but geez I have to go. I don't like dog and pony shows. When it concerns my Life I find it unconscionable. Call me cynical but I was more then disappointed Cort. I was angry. Given the need for my and every other sufferers survival, these people were having a casual meet and greet and pontificating about their credentials. Ugggg. And that was only one of two meetings they are going to have in a year? Most seemed unprepared, which given the import is outrageous, and/or unwilling to work very hard and I for one would have given them a piece of my mind and then prayed for forgiveness afterward. God help us. And She/He will, just not always in the time frame of my liking. :Retro smile:

    My thoughts are that we need to stop begging them to believe us and just behave as if their disbelief in our illness is preposterous, because it is, and hold firm to sane discussion of what are they going to do next to help our community. Because it is all about the patient, not their belief or disbelief that matters. It's really a moral issue. Are they or aren't they going to help. I'd ask the question and keep asking until they told me how and when. Blessings all.
     
  13. Cort

    Cort Phoenix Rising Founder

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    The Committee has never been particularly efficient and you get the idea that they are doing it as they go - I don't know if that is a byproduct of the rules that don't allow different subcomittees to talk to each other but yes, it is a bit like watching sausage being made.

    I think some committee members are prepared and some are not. I think it was the NIH rep - Dr. Hanna - who downplayed the blood threat. I agree that Dr. Unger's testimony was worrisome. I don't think any of us should expect her to do anything dramatic one way or the other. She seemed more open to the problems of the definition when I talked with her but the CDC is hardly innovative in their approach to CFS and it may very well be more of the same for the CDC. We'll have to see.

    Dr. Koh's appearance was in direct contrast to Dr. Agwunobi's a couple of years ago. Dr. Agwunobi made a stirring speech and really excited everyone and then did nothing really. Hopefully Dr. Koh really is a man of action - as his reputation suggests - and will actually follow up on his promises. Certainly we're lucky to have Wanda in there advocating for us. She has added prominence due to her promotion and we have the past liason to the Committee, Dr. Parekh, in the mix as well - so we seem to have more pieces in place than before. Will this be enough to move the NIH and CDC? They are so hard to move! Only time will tell.

    I'm sure we will be at least up to two days twice a year and Wanda is trying to get another day in there. The Committee has never been a model of organization but this is one of only two (or so I was told) advisory committees specifically devoted to a disease. The rest involve broad arenas.

    I agree about Dr. Jason :D We'll just have to see how it goes.
     
  14. Otis

    Otis SeƱor Mumbler

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    My hopes lie exclusivly with Wanda Jones. She is smart and persistant. Reading between the lines I believe she 'expedited the process' (aka sliced red tape with a machette) to get the new board members sworn in. It would not have happened without her.

    But she can only guide the group so far and she can only push forward what recommendations the members give her.

    As for conducting a meeting, everyone should Robert's Rules or Order as a start, it's embarassing.

    But a I do love Lenny.
     
  15. Revday

    Revday

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    Thanx.

    Thank you Cort for your response. It helped me to understand the lay of the land. I sure appreciate you and all the others who can stay so informed. Politics makes me nuts, obviously Your a light in the CFS medical black out here in Atlanta. :sofa:
     
  16. anciendaze

    anciendaze Senior Member

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    confirmation and induction

    This comment parallels something I've tried to suggest. I'm hoping to find a public statement I can quote directly, so I won't be accused of being the evil Simon in disguise. That is a trivial matter, though.

    There is a misconception here, which is very common even among professionals and researchers, about induction and confirmation. For Annette Whittemore to accept a logical fallacy in a casual conversation, when talking about work by someone else, is completely understandable. Making such a mistake in the entire conception of a study, as I believe those behind the negative studies did, is more serious.

    You can collect any number of examples to validate an hypothesis without confirming it. This is the fundamental problem of induction, nicely illustrated by existence of the Black Swan, (and explored at length in a book by that name, by Nassim Nicholas Taleb.) No matter how many white swans you can point to, you do nothing to establish the hypothesis that all swans are white. The best you can do is to search for non-white swans, and show that a thorough search fails to find them.

    In the negative studies, somewhat confusingly, we are dealing with a negative hypothesis. The results amount to saying all swans are white, because there are no black swans, while ignoring explorers returning from Australia. When you have reports, a check of Australia seems appropriate. Similarly, finding something which is neither white nor a swan, (like a red Mini,) has little bearing on the subject.

    I'm afraid the red Mini is closest to those results.

    This still doesn't establish the existence of a conspiracy, or show those involved to be imbeciles. It merely highlights the problem of group think, which reduces apparent intelligence to the lowest common denominator of the group. Individuals involved may yet be salvaged.
     
  17. Nermalina

    Nermalina Robbo

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    Hi Cort,

    Just wanted to say that I really appreciate the work you do at parsing the complex political and scientific information about research into CFS. There is very little media interest in ME/CFS in Australia (even the new measures to prevent blood donation from CFS patients received little coverage). Also, as an Australian, I am reliant by extension upon the United States for medical breakthroughs. Please know that your work is deeply appreciated internationally.
     
  18. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    The fact that McClure, Wessely and their cronies went out of their way several times to wrongly impune the Lombardi group does point to something more than not-so-great methodology- namely a coordinated attempt to keep us down using defamation.
     
  19. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Cort,

    Nice piece. Thanks for writing it.
     
  20. Cort

    Cort Phoenix Rising Founder

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    I think everyone is very committed to their interpretation of ME/CFS is and they are piling what ever evidence they have in support of that interpretation. Ideally researchers weigh the pros and cons of both sides and illuminate them both in their discussion sections of the papers but that doesn't seem to happen much anymore.

    In any case, given the Kuppeveld/McClure commitment to their interpretation of ME/CFS it didn't take much - a thin slice of research,- for them to discredit the WPI/NCI''s/Cleveland Clinics interpretation. Its a clash of paradigms, for sure.

    Wouldn't it have been something either group had actually FOUND the virus. What would they have done then? Actually we know. Wessely feels he has enough success with his methods that he would have kept on doing the same thing - he already said so.
     

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