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Thoughts About M.E.: Inquiring Minds Want to Know: Who is Behind the IOM FAQs?

Discussion in 'Institute of Medicine (IOM) Government Contract' started by NotAllInMyHead, Nov 15, 2013.

  1. NotAllInMyHead

    NotAllInMyHead

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  2. Mark

    Mark Acting CEO

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    Very good question this; this was the most immediately striking thing to me about this statement, and it is an important question: just who is it that is putting this out in the name of CFSAC? It clearly is not CFSAC who has written these FAQ responses - or at least, not the CFSAC committee as I understand it. It reads as if somebody within HHS, or within CFSAC, is acting as if they are CFSAC. As with previous HHS comments about the contract, which made false claims suggesting that the contract was what CFSAC had asked for, it appears that the name of CFSAC is being misused to give an appearance of legitimacy.

    Regarding this:

    Perhaps so, but it doesn't answer them. It doesn't even answer the questions as they are worded in the FAQ itself. For example:

    OK: so HHS "does not generally" "make formal endorsements" of "clinical recommendations made by nongovernmental groups".

    But the question - can it endorse the CCC, and if not, why not? - is not answered. Or perhaps we can interpret from the above that the answer is "yes, it could, if it wanted to" (since they fail to cite a reason why they can't and presumably they would do so if such a reason existed) but it doesn't want to. The only reason given is that the CCC are 10 years old - in which case, perhaps it should endorse the more recent ICC?

    And this...
    ...is not asking the question that (IIRC) Pandora has asked, and that many advocates want to know the answer to: "[How] Can the IOM Contract be cancelled?".
     
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  3. Ember

    Ember Senior Member

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    “HHS often helps disseminate clinical recommendations made by nongovernmental groups, but does not generally make formal endorsements of these guidelines.”

    But neither does HHS generally sign contracts with nongovernmental groups to develop clinical diagnostic criteria.
     
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  4. Ember

    Ember Senior Member

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    CFSAC seems to be in partial lockdown...not surprisingly, perhaps, after its May theatrics.

     
  5. Mark

    Mark Acting CEO

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    good point.
     
  6. alex3619

    alex3619 Senior Member

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    I have been wondering the same. Its an important question. CFSAC would have signed off on it unless someone stuffed up, which can happen.

    My current hypothesis is that it was written by CFSAC support staff, which means HHS.
     
  7. Nielk

    Nielk

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    CFSAC has not endorsed the IOM contract. To make it seem like they did is real deceitful. Actually two voting member of CFSAC signed the experts' letter and another two voting members signed the advocates' letter.
     
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  8. alex3619

    alex3619 Senior Member

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    I thought I should clarify my point. If the FAQ was by CFSAC, they would have signed it, clearly and unambiguously, unless there was a stuff up. They didn't sign it, which raises doubts it was from CFSAC.

    They should also have been aware enough of the controversy to address the question of who supported these views on CFSAC, and who didn't.

    In time CFSAC may respond, and we will learn the actual situation from them.
     
  9. Firestormm

    Firestormm Guest

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  10. alex3619

    alex3619 Senior Member

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    @Firestormm, which also appears to be the case with the FAQ, which is why I commented earlier. The CFSAC support team is not necessarily posting an official CFSAC response. They are, so far as I am aware, HHS staff, whereas CFSAC members are appointed to the panel. So the question still remains, who is this message from?

    We still await official CFSAC clarification.
     
  11. JohnnyD

    JohnnyD Senior Member

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    Nielk likes this.
  12. Goodness to M.E.

    Goodness to M.E.

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    I'm really confused by it all, M.E. is not 'CFS-unexplained fatigue'. (hence the reason we are treated so shabbily by the Medical Profession because most think we're nuts) so why would anyone want to use a 20 year old CCC to replace a 30 year old tool to provide us better medical care NOW. Has no one been listening to us when we seek medical attention over the last 30 years and are these forums and support groups just that, internet sites of no significant importance? I cannot believe any support group would even consider selling their members out for a diagnostic and research tool that is 20 years old and 20 years behind the times! I for one, do not live in a third world country, I live in Australia and we dont even have a M.E. Neurologist, Rheumatologist or GP in Australia who has experience or an expert in the field and this information was provided by The Premier of South Australia!
     
  13. jspotila

    jspotila Senior Member

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    "CFSAC Support Team" appears at the bottom of my copy of the email from the listserv, the same as other staff-authored posts from the listserv. As I said on my blog today, it is unlikely that this FAQ was approved by the CFSAC members themselves. An email vote to approve the FAQ document would constitute an electronic meeting of the full committee, and since it was not done in public it would be illegal under the Federal Advisory Committee Act.

    There are more important concerns about the FAQ, as Jeannette, Erica, and I have blogged, along with issues raised by many others.

    http://www.occupycfs.com/2013/11/18/faqchecking/
     
  14. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    I would like to see the 10 year old CCC adopted just like all of our experts do because it is quite accurate. Though it is 10 years old, the science since has been consistent with it, so it will serve. The main benefit of adopting the CCC or ICC would be that it would replace the inaccurate Fukuda and probably more inaccurate, planned IoM redefinition.
     

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