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CFIDS Association asking expert signatories about their current position on endorsing the CCC

Discussion in 'Institute of Medicine (IOM) Government Contract' started by justinreilly, Sep 28, 2013.

  1. Nielk

    Nielk

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    This is too great of an issue to sweep under the rug. This is not a play. This is real life with real consequences. As I wrote in my article HHS moves are devious. They took the recommendation of CFSAC and totally switched it around (bait and switch game).

    Had they followed up on CFSAC's recommendation, we would have had a workshop under the umbrella of CFSAC composed of real ME/CFS experts who have years of experience like the 34 who signed the letter to HHS. This is how other diseases are defined.

    Disease have never been defined by the IOM. It is this venue that is outrageous! This is not what CFSAC asked for and to pull a trick on us and make it sound as if that's true is truly demeaning to our intelligence.

    It is only currently that the IOM has been tasked to redefine GWI, or should I more accurately call by the name IOM has just revised to "chronic multisympton illness" (CMI ). Look at the panel they IOM has chosen for them, regardless of the fact that GWI patents have been outspokenly protesting this.

    Now is the time to fully protest this, before the damage has been done. We have not heard a reply yet from Sebelius for the letter of our clinicians. Our clinicians I'm sure have taken this action of writing this letter to HHS not too lightly. Why do you think they took this strong stand against a government agency? This could seemingly harm their future chances of getting government funding. Yet, they were willing to take this real risk! It's because they understand the great possible danger to their patients if this action bears fruit.

    As far as the CAA is concerned, they plead (in their letter) with the 35 that we need to speak in one voice yet, that is exactly what the 35 did. By one voice, they mean their voice (CAA's).
    Kati, taniaaust1, rosie26 and 4 others like this.
  2. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Emailing the National Research Council Governing Board Executive Committee, should probably be one of our next steps

    http://nationalacademies.org/studyprocess/

    National Research Council
    Ralph J. Cicerone, Chair
    C.D. (Dan) Mote, Jr., Vice Chair
    Bruce B. Darling, NAS/NRC Executive Officer
    James F. Hinchman, NAS/NRC Deputy Executive Officer & NRC Chief Operating Officer

    http://www.nationalacademies.org/includes/nrc_organization_01012013.pdf
    Valentijn and beaker like this.
  3. Marty

    Marty Senior Member

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    taniaaust1, alex3619 and beaker like this.
  4. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    "Spinnng Around". Another excellent post by Jeannette:

    http://thoughtsaboutme.com/2013/10/03/spinning-around/

    taniaaust1 and beaker like this.
  5. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Ember is correct. The name has been changed from Scientific Advisory Board to Research Advisory Council to reflect that there are more than just scientists on it. Ember's link seems current, while yours is a PDF from 2011, though maybe CAA is erroneously still linking to it too. So, Cindy Bateman is no longer on that Committee. I noticed also that Vincent R. Isn't on there any more.
    beaker and Nielk like this.
  6. Nielk

    Nielk

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    Thanks for that clarification.
    beaker likes this.
  7. beaker

    beaker CFS/ME 1986

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    Shakes head.
    How did it get so crazy. Who is really pulling the strings over there ?What happened to the stance that they were going to be a research group and not be involved in advocacy anymore ? Too bad they couldn't of stuck to that.
  8. Ember

    Ember Senior Member

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    Yes, of course, the IOM contract is for a clinical case definition only. But when it comes to the research definition, the NIH has convened an Evidence-based Methodology Workshop "to address the issue of case definitions appropriate for ME/CFS research." Dr. Unger, on the other hand, seems to be working on a case definition for both clinical and research purposes, the CDC's so-called “data-driven” case definition.

    This definition work is currently being carried out by the American government not twice, but thrice:
    Lois Ventura, Co-Founder of National Alliance for Myalgic Encephalomyelitis, writes in her September 30 letter to HHS, NIH, CDC, and Elected Officials, “'Minimizing overlap' is a contradiction. Having such a Workshop itself is maximizing overlap! The definitions are done – let us move forward, not stall out again, or worse, move backwards!”
  9. akrasia

    akrasia Senior Member

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    One of the best things about the expression of no confidence by M.E. experts is that it removes the usual reflexive scorn and dismissal of "crazy" patients from the debate.

    Someone should ask Ian Lipkin just what he said to Tom Frieden and Anthony Fauci. And more importantly, what they said to him.

    The determination by our masters to continue with the project suggests they have to make a renewed effort to control the narrative of science and m.e. It's not that I think this augurs well, I don't, but the why this why now question seems appropriate.

    Our doctors, to my dismay, have shunned politics and have never really asserted themselves forcefully, preferring to try to influence outcomes by participation and cooperation with the government. That they feel emboldened to do this now and to speak with such cogency is a very good sign.

    War was declared on us long ago by institutional medicine. Pretending that we are equal partners in this process is fantasy. By not accepting the marginality and alienation patients have had to contend with, the CAA from Stephen Straus onwards colluded with the institutions that have caused
    so much misery. Even if we grant the good intentions of Suzanne Vernon, her belief that she can exert any influence on the IOM process seems absurd. How well did she do for the veterans?

    Lucinda Bateman, whom I respect, has recanted her support for the statement of no confidence, writing,

    "We have, with blood sweat and tears, in small painful increments, and with the help of XMRV and the CFSAC, finally captivated the honest attention of the CDC, Social Security, Secretary of Health, the general public, a few wealthy donors, our elected officials, and now the FDA, and to some degree the NIH."

    At this late hour, how anyone can believe in the "honest attention" of the CDC et al. is beyond me.



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  10. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Lois' letter is spot on (if a bit repetitive- but since they haven't gotten it the first thousand times they've been told, I can understand the desire to repeat).
    beaker and Nielk like this.
  11. readyforlife

    readyforlife Senior Member

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    So the CFIDS.ORG website is out of date? So when I click on leadership to check out who is on their board of directors and scientific advisory board these people are not current? Or just the scientific advisory board people?
  12. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Akrasia, I sometimes shake my head at the stuff Bateman says about "fatigue" and GET etc., but to say that the "honest attention of CDC" has been captured is insane; the CDC CFS program is obviously the exact opposite of "honest" and honesty.
    beaker and Nielk like this.
  13. asleep

    asleep Senior Member

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    So the first ever use of such an IOM contract resulted in definitive diluting and whitewashing of GWI, a disease that is clearly a very politically inconvenient fallout from the military-industrial and pharmaceutical industries. It appears to be nothing short of an all-hands-on-deck political coverup (or, rather, further obscuring in plain sight) from the highest levels.

    One can't help but wonder what high level agency players really know about ME and its political ramifications, given that we are so honored to be granted only the second ever one-way ticket to permanent political purgatory.
  14. Nielk

    Nielk

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    Here is an 8 minute video of the testimony of a veteran at IOM.
    Ecoclimber likes this.
  15. readyforlife

    readyforlife Senior Member

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    Just finished reading Jeannette's blog, spinning around
    http://thoughtsaboutme.com/2013/10/03/spinning-around/

    She posted that Suzzanne Vernon is reportedly about to be appointed to the IOM committee. If that's true that makes me think that CAA has known all along about this contract.

    Suzanne Vernon is reportedly about to be appointed to the IOM committee for the “ME/CFS” disease definition, which, if true, creates a conflict of interest for the CAA to have an official position on the issue of the IOM contract at all.
    beaker and justinreilly like this.
  16. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    I have responded to PANDORA's Position statement:

    CCC must be adopted now!

    I read with much interest your Position Statement on ME/CFS Criteria. I heartily agree with all of it- with one big exception: I believe it is absolutely crucial that we all insist as a united front, along with the already published "letter by the 35 experts" and many emails of patient advocates, that the CCC be immediately adopted. We need to immediately end the harm that Fukuda, Reeves and Oxford are doing and that can only be realistically achieved by HHS immediately adopting the CCC.

    Of course, your other suggestions such as workshops to create an even better definition with bio markers and subgrouping, etc., are very on point and important, but we must focus on getting CCC immediately adopted first (and then we can improve on it). I hope you will amend your position statement to reflect this (and join on as a signatory to the letter of the 35 experts, both in a seperate letter to HHS and by signing on by the formal process that is said to be forthcoming for all those interested to endorse the letter of the 35 experts). United we can do this!

    Thank you for your consideration.

    Sincerely,
    Justin Reilly, esq.
    beaker likes this.
  17. asleep

    asleep Senior Member

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    Do any petitions exist in opposition to the IOM contract and/or the CAA? If not, I propose the creation and wide dissemination of the following two separate petitions:

    1. Repudiation of the IOM contract and disavowal of any resulting creations/guidelines/proposals, including:
      • Affirmation of support for the ME/CFS expert clinician letter to Secretary Sebelius and its proposal to adopt the CCC as the working case definition.
      • Rejection of the legitimacy and wisdom of proceeding with the IOM contract in defiance of this joint recommendation by the bulk expert ME/CFS clinicians.
      • Declaration of boycott and withdrawal of all support (financial or otherwise) from any organizations that lend support and/or credence to the IOM contract.
      • Preemptive boycott of all clinicians who adopt the output of the IOM contract (if it proceeds to fruition) in their clinical practices.
    2. Disavowal of the CFIDS Association of America (CAA), including:
      • Repudiation of the right of the CAA to purport to speak and/or act on behalf of the ME/CFS patient community and oneself as a patient.
      • Vote of no confidence in the entire CAA organization, including Suzanne Vernon and the entire Board.
      • Affirmation that the CAA acts solely for its own benefit, which frequently results in its acting in direct opposition to and to the detriment of the larger ME/CFS patient community.

    Thoughts? Additions?
    Ecoclimber likes this.
  18. beaker

    beaker CFS/ME 1986

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    There is a petition HERE started by Mary Dimmock. I started a thread about the petition HERE
    alex3619 and rosie26 like this.
  19. Ecoclimber

    Ecoclimber Senior Member

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    Remember that the Government is shut down. Most Congressional staff members are on furlough.

    I contacted and talked to Senators and staff members that sit on the Congressional appropriations committee that oversee the NIH and CDC budgets. We will see if any pressure comes from them.

    CAA​
    I'm curious on why the CAA is so involved in this since they stated awhile back that they are no longer will focus on advocacy but research? And, they are going through a transitional period.

    The CAA does not represent nor speak on behalf of the majority of the worldwide ME/CFS patients. Their importance is greatly overstated

    The most compelling ME/CFS scientific research and break through over the last 10 years was not on behalf of the CAA efforts. The advancements came from private donations, private foundations, university research labs and at major research labs across this country and around the world. Whenever there was a major breakthrough, the CAA position has been neutral at best.

    Coaliation Between GWS and ME/CFS​
    Tom Hennessy literally gave his life for patient advocacy. Tom was one of the firsts, before most scientists, to recognize that Gulf War Illness is similar to ME/CFS. Because of the similarities among the diseases, the necessity to reduce misconceptions, and the call for a stronger activism voice, Tom conceived of advocating for all of these illnesses together, along with fibromyalgia, environmental illness and chronic tick-borne infections. He suffered from quite a few of these ailments for many years.”

    On the Larry King Show, That show got pretty heated when I claimed that “many of our brave veterans are returning with very similar symptoms as all these ‘alleged whiney white women’ who can NOT handle stress!” I went on to say, that “If these highly educated, mostly male, stunningly victorious soldiers who only fought for four days, could come down with this terrible illness, then maybe the NIH and the CDC will be forced to stop telling lies about it.”
    http://www.cortjohnson.org/blog/201...m-hennessy-fierce-advocate-memorial-tomorrow/

    If the symptoms for GWS is very similar to ME/CFS patient community. Why would the IOM illness criteria differ from the GWS in defining the illness as CMI?

    If you read the DHSS SOW document, the various statements are very similar to the promises made to the GWS patient community and we know the result from the VA IOM committee.

    Guarantees were made to the GWS patient community that member selection to the VA IOM would be based on input by GWS researchers, GWS clinicians, patients, and patient advocates. They lied

    Guarantee were made that scientific research and information from the Congressional mandated Advisory Research Committee would be allowed and considered. They lied

    They diluted the pool of patients to include current veterans. In reality, the composition of the board was predisposed to psychiatric criteria and treatment protocal so that medical treatment and disability payement would be reduced.


    Call it what you want, dog and pony show, smoke and mirrors, bait and switch tactics by the DHSS. How many fruitless years has the patient community tried to change the CDC toolkit, the name of this illness, how many patients and their families, researchers and clinicians gave testimonies at the CFSAC meetings to a disinterested board members? What has been the result over the years? NADA

    Committees were formed and researchers/clinicians came up with the CCC and later the ICC ME criteria. The CDC and the DHSS refused to accept as a toolkit for practitioners.

    I sense that this is a behind the scenes ploy or alignment to have Wessely policies on GWS and ME implemented here in the United States. Instead of PACE it will be CBT/GET. Tradeoffs are made between governments.

    An independent board of distinguish’ scientists, IOM board is a clever tactic, a ruse, to legitimatize ME/CFS as a psychiatric illness. It will be etched in the minds of the American people and the medical establishment as the final arbiter on this illness.

    Eco
  20. alex3619

    alex3619 Senior Member

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    I think the third bullet point in number two will create problems. The first two bullet points are sufficient.

    The first proposition its a statement of advocacy intent. That should be made clear I think.

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