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International experts speak out against the IOM contract to determine clinical diagnostic criteria

Discussion in 'Phoenix Rising Articles' started by Firestormm, Sep 24, 2013.

  1. Iquitos

    Iquitos Senior Member

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    As usual. The CAA always puts it's finger to the wind to see how to respond to anything and then tries to run to the head of the parade once they figure it out.

    "Just once I’d like to see a bold statement come from the CAA."

    Not going to happen.
     
  2. Otis

    Otis Señor Mumbler

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    I agree with Parvo on this one but for me it's a secondary issue relative to the moves of recent days. Although if they eventually have a say in the definition we'll definitely see that issue arise.

    They've used words like this in an attempt to not alienate the signatories of the letter while simultaneously publicly supporting the IOM contact. If their nose were any further up the Secretary's butt they could see out her belly button. The CAA is very much a political entity. Watch the actions. Ignore the words. When the cards start flying at the IOM game, I expect the CAA to have a seat at the table with a nice stack of chips.

    Let's hope our docs and researchers get heard and are able to scuttle the IOM contact or it could get ugly.
     
    justinreilly, Iquitos and beaker like this.
  3. Nielk

    Nielk

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  4. Hope123

    Hope123 Senior Member

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    Quick comments:

    1) The initial letter was NOT sent to all clinicians and researchers but is being spread further now so there may be more signatories in the future. If your favorite clinician doesn't sign, you should ask them why.

    2) There's nothing wrong with both opposing the IOM contract and then bombarding them with comments if they decide to go with it anyway. I see no contradiction in asking for an cancellation now but working within the confines of what we have once we get there. We've been doing that all along anyway.
     
  5. Otis

    Otis Señor Mumbler

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    Good points.

    The second one is interesting. I too think the stand that the initial 35 took made a double statement. "You can't ignore us one way or the other." But I think that makes their push to cancel the contract all the stronger.

    I'm not sure how much flexibility will be shown be any one of the group given how strongly worded the letter was. I think they'll insist on using the CCC as the starting point and very strong evidence for ANY deviation. I don't see the signatories going along with some clean slate fishing expedition trying to cast a harpoon into every idiopathic chronic fatigue whale around**. So I'm not sure how much patience with the process will be shown by the signatories.

    I have wondered, if some clinicians/researchers didn't sign in order to have a strategic reserve of like-minded people (without or without such discussions with the group of signatories) in the event the IOM contract goes forward. I tend to doubt it. I think this was an all hands on deck exercise given the time allowed, but nonetheless this wrinkle intrigues me.

    * * No whales have been harmed in the writing of this post. If I could go outside I'd hug a tree, I would. Of is that wood? :confused:
     
    justinreilly, peggy-sue and beaker like this.
  6. Rich D

    Rich D

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    I didn't say we shouldn't take any actions, I'm just pointing out that as frustrated as we all may be, it doesn't serve us to make the HHS into the enemy. I don't think they are out to get us, they are just not well informed. Let's not impugn their motives.
     
    aimossy likes this.
  7. Otis

    Otis Señor Mumbler

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    This is just a discussion in a little corner of the 'net and you're going to chastise someone for questioning DHHS's motives? Funny, I saw references to actions in that post, not motives.

    What of the motives of CDC starting in the 80s? Are those out of bounds too?

    The fact of the matter is that DHHS is taking a very dangerous course of action, and ignorance is not an excuse. They have expertise at their disposal. The Secretary ignores it with great skill. She did the same with patient/advocate objections to the IOM prior to contract being awarded. When she started getting objections, she took it off the books and made it a private matter. So for the sake of examining motive, I can't possibly see this as above-board and benevolent even if I give it the absolute the most benefit of the doubt.

    And then there's the action itself. Letting a contract to an unqualified group who so completely sold down the river our own veterans - with so many parallels to our own struggles (AND they had served their country) - have this contract for ME is chilling.

    Personally I'm speaking out because I'm very concerned about the likely outcomes of an IOM-driven definition. Having said that, given DHHS's history with this illness and/or actions with this IOM contact alone, I don't blame anyone who distrusts DHHS' motives or feel they've made themselves the enemy based on their actions. All sample correspondence I've seen has been perfectly cordial. We can do that despite perhaps thinking differently.

    We don't have to be angry to take action but the action is really important. The link NeilK posted above is a great place to start. Please support the original 35 signatories who knew it was time to take a stand.
     
    justinreilly, Creekee, Nielk and 7 others like this.
  8. Christian Godbout

    Christian Godbout

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    Who is the # 1 advocate (or any other person concerned) who will be the first to know of the HHS' reaction and decision regarding the experts' letter, and capable of informing us here? Who is in the absolute front row among us?
     
    aimossy likes this.
  9. Otis

    Otis Señor Mumbler

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    I'm not sure there's a singular answer answer to that question. If I want the latest news I go to twitter. #mecfs and #neurome are probably the best hashtags. If you want a head start with who you might want to follow I'm @OtisQuila and see who I follow. I tend for follow people who are posting news and research and not so much conversational types. There's nothing wrong with that but I like to use twitter as a quick info source.
     
    Christian Godbout likes this.
  10. Roy S

    Roy S former DC ME/CFS lobbyist

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    Kati likes this.
  11. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Otis, Iquitos, Roy S and 2 others like this.
  12. Firestormm

    Firestormm Guest

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    If the contract proceeds - which I think it will - it will be interesting to hear from the experts what their thoughts are now. They wrote the letter and requested signatures before it was known that the contract had been granted. Unfortunate perhaps that the two crossed - both being published on the same day: but we are where we are. So where do we go now? Isn't there a webinair in November? I think so - though perhaps we'll hear more before then. Let's face it something like this review has been called for and was on the cards for many many years. Might be time to try and make the best of it and prepare to give evidence/form collaborations/present a united front by detailing what is wanted and why...
     
    aimossy likes this.
  13. beaker

    beaker CFS/ME 1986

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    The very thought that it would NOT surprise me IF it were true is very sad in and of itself. I was willing to be open after Kim left.
    ED: I will reserve judgement until it is confirmed or denied.
     
    Roy S likes this.
  14. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Guys, please see the following thread for follow-up on the CAA/Vernon issues:
    http://forums.phoenixrising.me/index.php?threads/cfids-association-asking-signatories-to-withdraw-endorsement-of-ccc.25544/
     
    Iquitos likes this.
  15. Iquitos

    Iquitos Senior Member

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    Kim left but Suzanne Vernon remains. If you take a look at most of the phony research Bill Reeves and Co. did, her name is on most of it. It's extremely disengenuous that she is now the "scientific advisor" for this bogus organization. It has not changed its stripes.

    At best CAA is simply a cash cow for those it employs.

    At worst it's simply a front for the government policy of denigrating, deceiving or ignoring us, whichever seems to be most effective at the time.
     
    justinreilly likes this.
  16. readyforlife

    readyforlife Senior Member

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    Does anyone know who wrote this letter and had all the Doctors and researchers sign it?
     
    justinreilly likes this.
  17. Nielk

    Nielk

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    Why would one think that the 35 experts would look kindly on the fact that HHS sneaked this contact by us and presented it as fact? They are obviously and very clearly opposed to it. Do we think that they will just change their mind since it has been accomplished already?

    This is not the review that has been called for. A review within the umbrella of CFSAC has been asked for. The IOM has an established way of how they select their panels and they do not sway by what patients or experts think. If we go by the way they selected their panel to review GWI, I think we will much more likely see behavior experts than any ME/CFS experts.

    It will be too late then to do anything about this. It will give a platform for them to give legitimacy and government approval for GET/CBT. Are we willing to take that chance?
     
  18. Nielk

    Nielk

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    I have asked CAA to make their letter public, in the merit of transparency.
     
    readyforlife and Sasha like this.
  19. Nielk

    Nielk

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  20. Nielk

    Nielk

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