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CAA: IoM Contract is an "Unprecedented Opportunity in the History of ME/CFS."

Discussion in 'Institute of Medicine (IOM) Government Contract' started by justinreilly, Dec 18, 2013.

  1. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    CFIDS Association UPDATE | CFS Advisory Committee

    http://solvecfs.org/cfids-association-update-cfs-advisory-committee/

    Esther12 likes this.
  2. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Once this IoM thing and CPET thing is finished, it will be time to COMPLETELY DESTROY CAA. No mercy. They will be a pile of rubble once we get through with them.
    Dreambirdie and Izola like this.
  3. Esther12

    Esther12 Senior Member

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    I don't really understand their argument.

    Also, the second of the three bolded statements seems clearly false to me.
    beaker likes this.
  4. caledonia

    caledonia

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    I agree, but you know you're going to get people saying that they're doing good research, so we need them.
    taniaaust1 likes this.
  5. leela

    leela Slow But Hopeful

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    How does a so-called advocacy organisation justify taking a stance in direct opposition to the fifty expert clinicians and researchers that signed the letter supporting the CCC and cancellation of the IoM contract? (It's not like we have 7000 experts--this is the whopping majority speaking out in an unprecedented show of solidarity.)

    Oh wait, I know, they don't bother mentioning it at all. No wait, they sort of do, by throwing out a straw man:
    "And at the same time, the unfortunate fact is that, although very strong, it is has not been uniformly accepted by the U.S. medical community."

    Circular logic anyone? Who wants to play a shell game? Dine on red herring?
    Izola, Roy S, beaker and 3 others like this.
  6. Nielk

    Nielk

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    oc100, justinreilly and Ren like this.
  7. Mark

    Mark Acting CEO

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    If the CAA has no advisory comments whatsoever to make about the make-up, balance and detail of this panel and some of the members on it, what does staying "vigilant and engaged" actually mean? :thumbdown:

    Does this mean "do nothing"?

    :bang-head:
  8. Nielk

    Nielk

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    I like your animations @Mark. Yes, I think that CAA believes that a constant state of nodding and winking at HHS is the way for them to best serve themselves...oops, I mean the patients.
    oc100, Dreambirdie, Izola and 4 others like this.
  9. lnester7

    lnester7 Seven

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  10. barbc56

    barbc56 Senior Member

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    Of course, I don't mean we should stand by and do nothing.

    IMHO, all the ranting and raving against the IOM is unwarranted and a waste of energy. I would think by this time the panel member's eyes are glazed over with all the negative comments and at least in this situation,I think a wait and see attitude unless something glaring is found is not only prudent. So far I don't see any major problems, relatively speaking.

    While I wonder why the IOM is even needed, they aren't going to rescind the contract. We need to work with the reality of the current situation.

    I like Pandora's and CAA's stance. In order to make progress we are going to have to be political savvy which means, like it or not, it's time for assertive not aggressive strategies, improved.

    The IOM is suppose to be unbiased and could also be said that some of the panelist are biased as they are CFS advocates and the medical profession.

    The scientific method is the same works in the same way.. Science doesn't do studies with preconceived biases. and then find information to back that up.

    Who knows, it's possible they may come up with a definition like the CCC. But once again, antagonizing the committee before they get started is not effective. for change.

    But then who can predict the future which is exactly my point.

    I'm sure this isn't a popular opinion but it is how I view this situation, popular or not.
    Firestormm and jspotila like this.
  11. barbc56

    barbc56 Senior Member

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    I am not talking about the CAA but we as patients. I don't see a problem with the CAA not making comments, at this point in time as IMHO, comments are not going to influence the IOM. I would think if comments were perceived by the CAA to be important they would do that.

    Again, let me remind you this is my opinion.
  12. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    @barbc56, well you're the first person outside of CAA, Pandora and Bateman that I have heard think this could be ok.

    As you might expect, I disagree with everything you say.

    It is beyond obvious to everyone that much of the 'science' of ME has been intentionally warped and is thus inaccurate. It is obvious to everyone except you that if we allow the 'science' of ME to take it's course, it will not correct itself within the timeframe in which we need it to. Thus, we are unfortunately required to take action to remove the corrupting influences.

    People are entitled to their opinion, however, I am worried that people like you and Cort, who are both obviously intelligent, will have influence on those who don't know that much about the situation by making it seem that it is reasonable to hold your views. They are not reasonable views.

    How is CAA assertive and politically savvy other than in lining their own pockets to the detriment of science and patients?

    No one has bothered the panelists, though you say otherwise.

    We have already influenced the process. The fact that the provisional slate is much much better than the current GWI panel is proof. So we need to keep it up.
    oc100, Dreambirdie, Izola and 4 others like this.
  13. jspotila

    jspotila Senior Member

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    Actually, there are more people that @barbc56 who think this could be ok. But most of those people are not speaking up because of their perceptions that they will be attacked and flamed for saying this.
    Firestormm and barbc56 like this.
  14. medfeb

    medfeb Senior Member

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    Jennie is correct - there are others not saying anything because they don't want to get flamed.
    Firestormm and barbc56 like this.
  15. Ecoclimber

    Ecoclimber Senior Member

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    CAA has taken a position directly opposite the majority of ME/CFS researchers who strongly oppose the IOM contract. This fact alone should speak volumes! Our researchers and clinicians are the ones standing up for YOU, the patient community. Who would have better insight on the dangers of this contract than those who had to deal with HHS and their offshoot agencies of the NIH and CDC over the last twenty five years. When we applied for fudning under NIH research grant money for ME/CFS research we were constantly turned down by panels that consisted mostly of psychiatrists and dentists!

    I am somewhat surprise that some in the patient community are willing to abandon them...leaving them to hang out to dry? They took up the clarion call to warn the patient community concerning this dangerous contract. They are the ones that dedicated their lives to advance the medical knowledge and science into ME/CFS over the past few decades not the CAA. They are the ones that sacrificed their careers and their reputations on behalf of the patient community in order to bring better treatment options to improve the hearth of many patients.

    Taking a position supporting CAA is taking a position opposing these brave ME/CFS researchers, the patient advocates and thousands of patients who have signed the various petitions. CAA is basically a two person advocacy organization headed by Vernon, a NIH/ CDC insider during the Reeves era and Carol Head, now the new CEO who claimed she was tired during the early 80’s but somehow overcame it. Conduct some fact checks on Carol Head! Don’t believe the spin from CAA. Pandora is an offshoot of CAA. Jennie Spotila was connected with CAA.

    So some people feel that CAA is more important and knowledgeable to them than the ME/CFS researchers and clinicians? They have a right to their opinion but patient advocates have laid out the case for the patient community which was not obfuscated by smoke and mirrors, spin and doublespeak. The opposite cannot be said about HHS and the CAA. The nefarious actions by HHS concerning this contract, their conduct during the CFSAC meeting, and the outrage toward patient advocates exercising due diligence under their First Amendment Rights is chilling and a warning about their true motives.

    ME/CFS researchers and clinicians took the unprecedented move to speak up so their voices could be heard. Support and back those that can really and legitimately bring a change in the healthcare of millions of ME/CFS patient sufferers and who have your best interests at heart. The stakes are too high to just sit on the sidelines.

    Eco
    Last edited: Dec 21, 2013
    oc100, Izola, Stuart and 5 others like this.
  16. Snowdrop

    Snowdrop Senior Member

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    It really is hard for any of us (particularly people like me who are political neophytes) to know how this will all play out.
    Will the 'reasonable' choices on the panel be strong enough to oppose the indefensible nonsense from the likes of M Alergria, and C Mulrow? Who knows.
    I agree that the IoM contract should never have been and perhaps still (one can't help believing from past experience) they wish to lull us into false security when the end game has already been chosen regardless.
    I also think that this is as good as it gets in terms of the fight specific to the contract.
    Perhaps speaking to Alegria and Mulrow directly (and politely) to get something concrete from them will help us be able to hold them accountable further down the road.
  17. barbc56

    barbc56 Senior Member

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    I agree. We now , at least, know what we are dealing with. If during or after this whole process, things become mangled, that's where we now need to focus our time and energy. I am not saying we shouldn't have expressed our concerns beforehand but I think, SOME, while having only good intentions, have gone a bit into overboard mode, by assuming the worse.

    Of course, we can't forget about the past but it is the past, we have no control over what happened but need to learn from it. IMHO, it's time to put our effort into the future.

    Advocacy can be such a tenuous balance and it can be difficult to reach that goal. It's a learning curve which complicates things even furthur. Not an easy task for either/any side.

    This is a unique opportunity that might, emphasis on might, turn out to be productive. Let's at least give it a chance.

    Time will tell.

    PS I shouldn't have to say this again, but these are my perspective.
  18. taniaaust1

    taniaaust1 Senior Member

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    [quote]

    Certainly the Canadian Consensus Criteria has provided an important foundation for clinically defining ME/CFS. And at the same time, the unfortunate fact is that, although very strong, it is has not been uniformly accepted by the U.S. medical community. The credibility and authority of the IOM is important to making ME/CFS widely recognized and diagnosed throughout our nation’s medical community. And that will help patients.


    [/quote]

    As far as the CEO of the CFIDS Association of America letter goes.... I think we need to rather look at why wasnt the CCC never accepted in America by the U.S. medical community. Could it be all due to cause the CDC didnt support it. Had the CDC and the Amercian gov health orgs and even orgs like the CFIDS Assoc of America showed more support for the CCC and published it and pushed it being used, rather then crappy definitions out there .. the U.S. medical community then would of supported it.

    or are I wrong in my post.. did the CFIDS assoc use the CCC thoughout the years?

    Im making this assumption as many of the ME/CFS orgs havent supported CCC and then they lay blame elsewhere.

    As a patient org.. the CFIDS assoc of America should of tried to do much more for the CCC to become accepted, they could of sent info out to drs on it or whatever.

    Even whatever OMI definition comes out of things.. there will have to be doctors education on it (something the CCC didnt get) before it would be properly accepted.

    Actually there is a good chance it wont be accepted and that things will remain as bad as they are now,(wasting all that money which was put into this) if that definition doesnt come out well.
    oc100, Izola, justinreilly and 2 others like this.
  19. taniaaust1

    taniaaust1 Senior Member

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    " None of us can do everything, but together we can become a body strong enough to defeat this illness."

    Yeah makes no sense to me either when they've purposely ignored what so many ME/CFS patients wanted... so I dont get the togetherness bullshit they are giving off. They've worked against the patient community for too long.
  20. alex3619

    alex3619 Senior Member

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    We have two examples of this process in action in the last seven years, the NICE guidelines and the recent GWI report, both "evidence based". Both suggested CBT/GET. The GWI report wanted Chronic Multisystem Illness, which has also been promoted for CFS. Further, CMI has been implicated as somatization, a psychiatric disorder. These are not minor concerns, without the current advances in biomedical tests and treatments a result like this for CFS and ME would devastate millions of people - limit medical and disability insurance, prevent tests and treatments, and justify incarceration at a psychiatrists whim.

    None of this might happen but its a huge risk. We are relying on our panel experts to stop this, but they may be bound by contract, a contract we have not seen. That contract needs to be public.

    The experts who wrote the letter have far more knowledge about these things than any of us, and the same goes for our advocacy organizations, the experts know more than them too. If we cut our experts loose, where are we?

    There is unprecedented opportunity here, but we have a thimble full and the HHS has a bucketfull. We don't know what they are putting in that bucket, and we wont be really sure for a year and a half, but I don't like what they have been shovelling so far.
    Last edited: Dec 21, 2013
    oc100, Wally, Izola and 4 others like this.

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