Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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Will the Real P2P Please Stand Up?

Discussion in 'General ME/CFS News' started by jspotila, May 19, 2014.

  1. jspotila

    jspotila Senior Member

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    I went back through every public statement HHS has made about the purpose of the NIH P2P meeting. They have contradicted themselves multiple times. They also withheld the information that the P2P Panel was 100% non-ME/CFS experts, despite two opportunities to tell CFSAC in 2013. Dr. Maier did not explain the "jury model" until the IOM meeting in January 2014.

    I've collected the most telling quotes in this post, and added additional information about whether our experts approved the questions in the AHRQ study protocol. (wanna guess?)

    http://www.occupycfs.com/2014/05/19/will-the-real-p2p-please-stand-up/
     
    *GG*, WillowJ, Iquitos and 2 others like this.
  2. Nielk

    Nielk

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    Thank you, Jennie for your great report....again.

    Exactly! If it sounds like it, looks like it.....

    My personal theory is that this p2p is an insurance policy for them. When the IOM will come down with their verdict, and the community will try to reject/protest it, the HHS will counter it with the p2p "independent" results which will mimic the IOM one.

    As far as not telling us that there will be no experts on the working group until recently - they were trying to avoid resistance until it was a done fact.

    I am so surprised about this....NOT!

    If this is true, why are these anonymous members not speaking up? What are they afraid of? We will get nowhere by mere innuendos or hearsay. There must come a point where someone will be the brave whistle blower. So the only meeting with experts was the one to come up with the questions but the questions were changed. The rest of the work is up to non-experts. We are in for some ride here - more like a plunge to the abyss.
     
  3. jspotila

    jspotila Senior Member

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    Those anonymous people have things at stake. I can't answer why no one wants to be a whistle blower. I'm doing what I can to encourage people to speak out, but I also have to respect confidentiality and protect my sources.
     
    Nielk likes this.
  4. Nielk

    Nielk

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    I understand that you are doing what you can and I appreciate everything that you do. I wish though that someone (all) the members if that committee would come clean with this. Surely if they come out as a total group, they won't be penalized for it ?
     
  5. jspotila

    jspotila Senior Member

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    It's risky. Can we assure them that there will be no consequences? They have to weigh the risk-benefit analysis.
     
  6. caledonia

    caledonia

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    Cincinnati, OH, USA
    What kind of consequences are we talking about?
     
  7. jspotila

    jspotila Senior Member

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    Publicly opposing NIH or HHS is not a comfortable thing for people to do. Someone like me has nothing to lose. Not true of others involved.
     
    *GG* likes this.
  8. Nielk

    Nielk

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    This is exactly why it does not make any sense to have anyone on any of these panels, whether it is the p2p or IOM who rely on NIH funding. There is clear bias and this is here a clear example of that.

    Many advocates have voiced concern with the fact that the majority of the members of the IOM committee receive NIH funding. This is a clear problem/bias because how comfortable are they going to be going against HHS dogma?

    As far as the p2p committee, I don't know how many are reliant on NIH funding, because the membership have been kept in secret. Why is that? where is the transparency?
     
    NK17 likes this.
  9. jspotila

    jspotila Senior Member

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    But if we eliminate everyone who gets NIH funding, then MANY of our top experts are eliminated! Lenny Jason, Nancy Klimas, and on and on - they all rely on NIH funding because that is the life's blood of research in this country (for any disease not just ours).

    We cannot disqualify experts merely for getting NIH funding, and we have to be realistic in our expectations of what they can and will do politically. Scientific politics and advocacy politics are a tangled web, and as patient advocates we will have to move on our own and hope they follow when they can.
     
  10. Nielk

    Nielk

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    Lenny Jason and Nancy Klimas have done tremendous work for this disease. We need them and I hope they will continue to contribute but, maybe they are not the best candidates to serve on this type of committees. There are experts out there who do not receive NIH funding. They should have been the ones to be called upon since HHS is the sponsor. This was my great concern early on.
     
  11. jspotila

    jspotila Senior Member

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    I think that's a good point. I'm not trying to single out specific people, though. Certainly there are clinicians who do not receive NIH funding, but they may be working on things relevant to FDA or CDC (multisite study). Some experts have to consider not only their own interests, but those of their collaborators, students, etc. And again, scientific politics (what committees to serve on, what positions to take) are different from advocacy politics.

    I'm just hesitant to say that everyone who gets NIH funding has an automatic conflict of interest for these things. Some of those NIH funded investigators have unique experience that we need in those committee rooms. Some of those not bound to NIH may have advocacy politics that some don't like. And clinicians do not bring the same scientific perspective that researchers do. Ours is still a small field, and we already overtap some of those experts. Shrinking the pool does not help us.
     
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  12. Nielk

    Nielk

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    This is exactly why HHS has no business in defining diseases. It should have come from the medical community like the CCC and ICC and then there is no danger of such conflicts.

    This is really the main reason why advocates and patients are at such uproar about this whole proceeding.

    The p2p like you stated in your article was never meant to serve for such a study just like the IOM is not equipped for defining complex diseases.

    To add insult to injury, they are both sponsored, driven, guided by HHS.

    How can a legitimate, independent study result from such works?
     
    *GG* and WillowJ like this.
  13. *GG*

    *GG* Senior Member

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    I have no faith in our gov't, look at how Gov't healthcare has led to the death of how many Veterans?!

    GG
     

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