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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When does the P2P report come out?

Discussion in 'Action Alerts and Advocacy' started by caledonia, Dec 6, 2014.

  1. caledonia

    caledonia

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    I thought it was mid Feb, due to the FOIA info.

    Someone is telling me they heard at the CFSAC it's now January?
     
  2. Denise

    Denise Senior Member

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    There are a number of documents coming up.

    The FINAL version of the AHRQ evidence review comes out on DECEMBER 9th (should be posted on the AHRQ and P2P sites). I do not know when the document on the disposition of submitted comments is released though. (count these are documents # 1 and 2)

    The draft P2P report should come out close to 24 hours after the close of the meeting (so the 11th or 12th of December).
    The clock for submitted comments starts ticking right away and we have 30 days (from the release of the draft report) to submit comments about the contents of the report.
    I believe the next step is that the panel goes over the public comments and does final edits and 2 weeks after that releases the final report.
    So at a guess, I think the final P2P report comes out before the end of January.

    As I understand the timeline, the IOM reports comes out mid-February or early March. (fwiw - based on the timeline, I am pretty sure IOM has finished all of its writing, editing and both the internal and external review of the document.)
     
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  3. caledonia

    caledonia

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    Thanks for your reply.
     
  4. Anne

    Anne Senior Member

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  5. user9876

    user9876 Senior Member

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    Its improved from the previous version. They describe the PACE recovery criteria as contradictory. But that is somewhat buried after they quote the results.

     
  6. alex3619

    alex3619 Senior Member

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    While accurate this is one of the least important issues about PACE. There are far more extreme mistakes, though also more subtle and so hard to pick up on. Did they mention what age equivalent SP-36PF of 60 was?
     
    Last edited: Dec 9, 2014
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  7. BEG

    BEG Senior Member

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    Esther12 likes this.
  8. Wally

    Wally Senior Member

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    I called the Office of Disease Prevention at 3:00 pm E.S.T. (12/18/2014) to check on when the Draft P2P Report would be posted and I was told they were still working on getting it posted on the website. I asked if it would be posted by the end of business today, but I was told they did not have a time frame for when the report would be posted other than it was planned to post today.
     
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  9. Esther12

    Esther12 Senior Member

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    I was rather hoping they'd realise that they needed more time.

    My expectations are low for something that's taken a week... hopefully they'll mess it up in our favour for once.
     
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  10. Dreambirdie

    Dreambirdie work in progress

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    @caledonia There are people spreading a lot of misinformation about your advocacy project on FB. It would behoove you to address that ASAP. I tried to PM you, but that was not possible due to the fact that I am blocked.
     
  11. jimells

    jimells Senior Member

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    I'm surprised they aren't waiting until late Friday afternoon to post it. That is a famous trick by DC Dunces who are ashamed of their work and are hoping the stenographers, ahem, establishment journalists forget all about it by Monday AM.
     
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  12. Denise

    Denise Senior Member

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  13. jimells

    jimells Senior Member

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    "Executive Summary"??? Really? I thought this was supposed to be a real report, not a Summary for Dummies.
     
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  14. Wally

    Wally Senior Member

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    Here is a message I sent to Dr. David Murray, after spending most of the afternoon trying to find out when the P2P Draft Report would be posted. Unable to get through to the Office of Disease Prevention during the day except for one phone call at 3:00 pm (noted above in Reply No. 8), I spent the rest of the afternoon making phone calls to the Office of the Secretary of the HHS, Office of the Asst. Secretary of the HHS and, the Office of the Director of the N.I.H. to see if I could obtain any additional information about the posting of this document.

    At around 5:20 pm (EST), Dr. Francis Collins' assistant tried to contact the Office of Disease Prevention, but she was not able to reach anyone. She was very surprised that I had so much difficulty reaching this Office because they normally have six people available to answer phone calls. She suggested that I contact the Asst. Director of ODP, Dr. Murray, by e-mail. She provided me with a link to the e-mail directory for the N.I.H. where I could find Dr. Murray's e-mail address.

    Here is the link that I was provided for the directory of e-mail addresses for the N.I.H. (NED@NIH.gov). Set forth below is the e-mail I sent to Dr. Murray (with a cc to Dr. Collins, NIH Director) and Dr. Murray's (prompt) response to my inquiry. It appears that while I was drafting/sending my e-mail to Dr. Murray, the Draft P2P report was being posted on the ODP website.

     
  15. jimells

    jimells Senior Member

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    Well Halleluiah!

    This is strange, because later on the report complains that studies are mostly female patients:

    Note the careful use of the word "etiology". This fits in with Sir Weasel's theory of a biological etiology that is continued by the insistence of the patient to think the wrong thoughts. This is left unspoken in the above quote.


    What about distinguishing between ME and CFS! So far, this document completely ignores this issue and the entire history of the naming debacle. We don't know if the authors think "ME/CFS" is one illness with a funny compound name, two illnesses somehow jammed together, or something else. Really, we have no idea what exact illness this report is even talking about!


    Is this a statement of the obvious or an excuse not to fund any more research?


    Looks like they're trying to thread the needle here. They didn't study the PACE garbage very close, or have chosen to ignore its obvious flaws. It's hard to understand how any sincere person could think that the claimed study improvements should trump actual real-world experiences that contradict study results, especially after admitting that contradiction.


    So GET creates a "fear of harm" but no actual harm? This is really, really bad. It implies that GET would work if only it were properly implemented.


    I fail to see how better subjective questionnaires will move the science forward, although maybe they can sort-of help clinicians make a diagnosis? But if a clinician needs to use a questionnaire to make a diagnosis, are they really qualified to diagnosis this illness?


    Nope. Nada. NO. GPs have no business managing this illness on their own. No one would expect a GP to manage any other severe, complicated multi-systemic disease. Patients will never receive proper diagnosis and treatment until there are competent specialists accessible to everyone with this illness.


    Well, how did this little tidbit get slipped in past the psychobabblers? But still, how about, "Is ME CFS?"


    At Line 200 the report moves into recommendations. They are so obvious, I hope they didn't have to strain to hard to come up with them.

    Huh. "Create new knowledge" and do some research. Why didn't I think of that. Looks like whoever paid for their fancy degrees got their money's worth.


    This has already been rejected by HHS. The report writers probably don't know that.


    A grab-bag of recommendations naturally has to include something for everyone, especially the psychobabblers.


    But no neurologists/endocrinologists/immunologists to treat patients with a neuro/endo/immuno illness? REALLY?


    Never miss a chance to promote psychobabble!


    Yup. Let's have a meeting to discuss if we should have more meetings


    Finally, something specific, helpful, and doable. Thank you. The "community" (excepting psycobabblers, of course) already seems to agree on the CCC. Too bad the report doesn't mention that and recommend the CCC for adoption. But I don't imagine that would be allowed.


    Anybody know what this is? Smells like CBT and GET to me.


    Well that's it. No footnotes. No references. No data. The Evidence Review was not included by reference. I guess that's what makes it "Executive" material!

    p.s., the line numbers are part of the original document.
     
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  16. Denise

    Denise Senior Member

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