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Article: The Stars Begin to Align at the NIH: A CFS Review Panel. For CFS!

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Nov 12, 2010.

  1. Cort

    Cort Phoenix Rising Founder

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    I'm not sure. I know that the CFIDS Association and IACFS/ME and perhaps other organizations (WPI) regularly nominate individuals they believe should be on the panel.
     
  2. Cort

    Cort Phoenix Rising Founder

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    I can't believe they fund this ^(*^(!. :headache::headache::headache::headache::headache: I wonder how much money they spent on that study!
     
  3. CBS

    CBS Senior Member

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    As I said, I have worked in a pain clinic and movement for many pain patients eventually leads to a dramatic reduction in pain (often referred to as myofacial pain - muscles shorten and reduce range of motion, trigger points, etc.). My problem is that just as the healthy population benefits from exercise, so does a large segment of the pain patient population. Lacking experience in CFS or an appreciation of PEM, Dr. Fillingim has no experience with or appreciation of the processes involved in CFS (he is quite likely to think that he does if he makes unwarranted assumptions about non-existant similarities between CFS and pain patients). Dr. Fillingim's one and only fibro article (2003) simply concludes that using a number of self-report measures, he identified "biopsychosocial" components to pain in fibro pateints but that there appeared to be additional pathophysiological components he didn't understand.
     
  4. valentinelynx

    valentinelynx Senior Member

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    Used to be?

    I'm sure Bill Dement, (William C. Dement, MD, Ph.D.), famous sleep researcher (trained as a psychiatrist with PhD in neurophysiology) would be surprised to have the past tense applied to him! Still alive and kicking; had lunch with him earlier this year. Good guy.
     
  5. Sasha

    Sasha Fine, thank you

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    I'm glad he's still alive! I saw a sleep research video of him decades ago and in my memory it looks like it had been filmed in about 1912 so I thought he'd be about 150 now. Maybe we had a bad copy! We thought he was great, though. You're lucky to know him!
     
  6. mpoweringME

    mpoweringME

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    I saw dr peterson saying he had seen many patients who had become ill with me/cfids following dental surgery. infections became systemic and patients were ill for many years. this may shed some light as to why a dentist could have been invited to join the panel. german study showed a possible route to transmit xmrv via nasel and sputum so perhaps this is an arean we should be looking at.
     
  7. RivkaRivka

    RivkaRivka Senior Member

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    what i was trying to ask earlier was WHEN exactly this panel shake up happened. does no one know? i'm asking because at the meeting with the NIH on Sept 7th, patient advocate charlotte made a very strong and good case for how absurd the make up of this panel was (dentists?). so i wonder if the change happened due to her Sept 7th face-to-face explanation of how important this panel is and how much we needed it to change. go, charlotte!!!!

    my learning from this: we need to establish a diverse patient committee that meets regularly, ongoingly, and face-to-face (or phone conference call) with NIH officials. Now.

    as i have said to bob and charlotte, my co-organizers on the "Time for Action NIH 'What have you done for ME/CFS today?'" campaign, my feeling is that these ongoing meetings should have been requested in exchange for ending the Time for Action campaign. as in, we'll stop inundating you with daily emails/calls/faxes in exchange for monthly meetings where we discuss the NIH's progress on ME/CFS issues. unfortunately, we did not request this at the time. but my feeling is that now is just as a good a time as any to request it.

    at these envisioned monthly (or every other month) meetings, the patient community could let NIH officials know what is (and what is not) important to change (in their sphere of influence, of course), and what changes should take priority. and at regular meetings the patient committee could serve as a type of watch dog group, helping to guide the NIH when we see them going off track (for example, we could have told them that adding dentists to a cfs grants review panel was not the best idea). at these meetings, we'd tell them our grievances and then our suggested remedies. they'd tell us what they will do in response to our grievances and suggested remedies. and at subsequent meetings, we'd get an update on their progress. with these meetings, they'd essentially be held more accountable for implementing what they *say* they will do. and knowing that they have a pending meeting in 1-2 months time, where they will have to report back to the patients, will keep a fire lit under their butt, so they feel a healthy sort of pressure to do their work and not slack off. after all, our lives are on the line. and at regular meetings we would gently remind them of this fact when they see our faces or hear our voices (phone conference calls).

    though it was wonderful that mangan meet with patients spontaneously at CFSAC, i do not think that having a spontaneous meeting serves the same purpose or would get the same results as ongoing meetings with a patient group. similarly, i don't think that having 1 or 2 patients, however smart and well-meaning they are, being informally (and back channel-y) in touch with 1 or 2 NIH reps would get the same results as ongoing meetings with an established, diverse patient committee. of course, there is a role for and a usefulness of this type of arrangement, too. but it does not serve the same purpose as, or take the place of, the larger patient committee meetings. also, there is always the concern that this type of informal, backchannel arrangement would lead to the NIH's coopting of just 1-2 patients. (i am not saying that this has happened, just that it can easily happen. of course a whole patient committee can be coopted, too!)

    these are my thoughts.

    i see only gains from such ongoing meetings. no down side.
     
  8. floydguy

    floydguy Senior Member

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    Wow, I've never heard that before. How interesting. My health started to deteriorate around the time of a "botched" gum graft surgery.
     
  9. floydguy

    floydguy Senior Member

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    Many physiological responses can be behaviorally conditioned, and I believe that pain is no exception to that rule,

    Receiving funding for ridiculous research that produces nothing of value can behaviorally condition researchers to be incredibly lazy and non-productive and should not be condoned.
     
  10. Sasha

    Sasha Fine, thank you

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    Sounds like a great idea. Advocacy groups such as the CAA, no matter how well-intentioned, can't always see things from the patients' point of view. We need patients representing patients for this.
     
  11. pictureofhealth

    pictureofhealth XMRV - L'Agent du Jour

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    I always took the view that pain is warning that something is amiss in the body and should be addressed, not ignored by pretending it doesn't exist. Call me old fashioned ...
     
  12. Otis

    Otis SeƱor Mumbler

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    YES! YES! YES! One standing agenda item should be a review of grant application status submitted, in review, rejected - and WHY.! We need to be able to keep score so we can refute reports about lack of requests, etc. The website should have all the details. We need total transparency on this topic.
     
  13. Cort

    Cort Phoenix Rising Founder

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    Cheney also has reported that removing dental infections, when they occur, can dramatically health
     
  14. Cort

    Cort Phoenix Rising Founder

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    I'm sure everybody played a part. The CFS SEP has been under rather constant discussion for several years. Reports have been made and sent to the director. The director has actually appeared several times at the CFSAC meeting and has noted the problems. Dr. Glazer noted that he'd had a long discussion with the director about it. I know the IACFS/ME and CFIDS Ass. have had several direct meetings with them. Pat Fero did a report on it I believe. I've done blogs on it......I imagine its an accumulation of things - a new overseer of the panel, ME/CFS's new visibility due to XMRV....finally the stars aligned for some reason.
     
  15. Cort

    Cort Phoenix Rising Founder

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    They are very touchy about details. It may take FOIA's -which in all honesty, take about 15 minutes to do. I asked that the CFSAC panel require the NIH representative to provide a summary of all activity on CFS; include number of grants applied for and accepted for and that was not acted on.

    My FOIA indicated that the # of grant requests actually is VERY low; 58 over something like 6 years; 24 of which, as I remember, were for the RFA. Getting researchers interested in this disorder has been one of the key problems. Hopefully that is changing with XMRV and the makeup of this panel should give them more confidence that they can get funded.

    Its like a chicken and egg scenario; its been thought that they believe they can't get funded - so they don't apply. Was that true? We'll now see if the CFS SEP itself was a major drag on the number of grant applications accepted!

    If you read this article you can see how many grants were funded and where they were stopped - and the next big opportunity for us

    I agree that we need to be vigilant and track this more carefully. I think I'll file a FOIA today! :cool:
     
  16. Kelly

    Kelly

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    Correction: Luethke

    Speaking of small corrections regarding names and spellings. The Scientific Review Administrator for the Center for Scientific Review is Lynn E. Luethke.
     
  17. Recovery Soon

    Recovery Soon Senior Member

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    I got my acute onset within a week of having two titanium dental implants surgically inserted into my jaw.

    I spent the next two years debating whether I should have them yanked out, even though I tested negative to titanium allergy.

    Where exactly is the credible information on this topic from Peterson? I'd rather not visit another dead end, but I don't think the issue was ever fully resolved.
     
  18. CBS

    CBS Senior Member

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    People, he's not a dentist!

    He's a psychologist and he knows nothing about infectious agents and infection!
     
  19. Cort

    Cort Phoenix Rising Founder

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    Really a thorough summary of the CFS SEP's and Trans-NIH working group's activities every year should be posted on the CFSAC site. It should include how many grants were submitted, how many were turned down, how many went up to the Working Group and how many they funded. How can the committee know what to work on if they don't know where the problems are?
     
  20. Roy S

    Roy S former DC ME/CFS lobbyist

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    Thank you Charlotte and Bob for the hopeful news. I don't understand why the CAA was silent about this.

    This committee was mandated in an Act of Congress signed into law by President Clinton very early in his presidency.

    "Section 447 (b) Extramarital Study Section- Not later than six months after the date of enactment of this Act, the Secretary of Health and Human Services shall establish an extramural study section for chronic fatigue syndrome research."

    It was one of the CAA's biggest mistakes ever to settle for a Special Emphasis Panel instead of the intended regular Standing Study Section that I and others had been lobbying for over the course of years. Joan Sutherland put a lot of effort into it. We had the language in the bill before the CAA took over advocacy.

    20 years of Kim McCleary.
     

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