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Lessons from ME/CFS: Finding Meaning in the Suffering
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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. Esther12

    Esther12 Senior Member

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    Wasn't the $1 million just speculative anyway? Details on cost still have not been released.
    taniaaust1 and Firestormm like this.
  2. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Yes, you're right. I tried to find out what the budget and breakdown of it was for the last GWI report from IOM, but couldn't find anything. All I could find was a third-party's listing of the costs of the nine IOM GWI reports through August 1, 2002. According to this site, at least, there were nine reports costing an average of $1,826,000 each.
    http://www.gulflink.org/iom/iom.html

    The only other info I found was a cost of $8.5M for a report on geographical differences in health care.
  3. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    I wrote to CAA's board:

    beaker, leela, Ecoclimber and 4 others like this.
  4. Marty

    Marty Senior Member

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    Excellent letter to CAA, Justin. People seem to think the doctors' letter was about the name or the definition, but it wasn't. It was about asserting the doctors' authority to name and define the disease as they wish and as they have been doing for 10 years, and for the government to accept (and fund) that. And now for the CAA to accept the doctors' expertise and to help assure that the IOM gets cancelled. (For evidence, just look at what IOM did to Gulf War Illness.) I hope that those who still support the CAA will encourage CAA to change their position and to refuse all requests from the media who still assumes they are an advocacy organization. Support for our doctors is critical right now. It is not saying you agree with any definition or name. It's just saying that our doctors have the experience with the patients, which the CDC doesn't, and our doctors have a history of listening, which the CDC certainly does not.
    asleep likes this.
  5. Ecoclimber

    Ecoclimber Senior Member

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    Excellent. The pressure must be continuous until they relent. Add the board of directors of Pandora and Offer (Bateman) in Utah as well. Critical Mass is needed from everyone to get their attention!

    Eco
    asleep and beaker like this.
  6. leela

    leela Slow But Hopeful

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    Okay I know this is sort of OT but for cryin' out loud we are *all* fricking experts on coping, and with a lot more than fatigue!! I am so over this crap!! Someone should give *us* all that money for having already coped for decades now!
    SOC, justinreilly, Valentijn and 5 others like this.
  7. Ember

    Ember Senior Member

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    Time flies. We discussed that $600,000 NIH grant here two years ago. Dr. Friedberg's study reports huge dropout rates, by the way: “Dropout rates at the 12-month follow-up were high (42%-53%), perhaps attributable to the burden of monthly telephone calls to assess health care use.”[​IMG]:thumbdown:
  8. alex3619

    alex3619 Senior Member

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    They could get coping programs out there at minimal cost just by hiring a bunch of long term patients. We live with it, most psychs only read papers about it or use outlandish theories.
    SOC, beaker, leela and 1 other person like this.
  9. Nielk

    Nielk

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    This was posted by Wildaisy on mecfsforum:

    This is Dr. Mikovtz' response to CAA's letter to the 35.


    Yes they did and below is the response I sent:

    To whom it may concern:
    I absolutely stand by my work of the last 7 years including my signature on the letter to secretary Sebelius of 9/23 regarding the case definition of ME/CFS.

    I know that the CAA is not and has never in my experience responded to concerns expressed by the patients nor do they now or have they ever served in the best interests of the patients as is the only duty of an advocacy organization. This IOM contract is simply a waste of precious resources.
    I stand by my signature on the letter and my work which is now always has been and will always be in the best interests of the patients.

    Sincerely,

    Judy A Mikovits, PhD
    SOC, alex3619, beaker and 4 others like this.
  10. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Oops, wow, time does fly!
  11. beaker

    beaker CFS/ME 1986

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    Go Judy !
    asleep, justinreilly and rosie26 like this.
  12. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    More from Wildaisy:

    http://www.mecfsforums.com/index.php/topic,17834.15.html
  13. Andrew

    Andrew Senior Member

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    I have to say this whole thing has hit me like a kick to the belly. I have not come to realize that it's not simply a matter of activism by energizing the CFSAC, because even that has been undermined.

    As I see it, urging from a couple of CFSAC members got a majority to take a stand on the definition. They decided to vote in the CCC to be (at the very least) the de facto interim definition. And it looked like they were not going to give up on this. As soon as this started to gain force behind it, the HHS stepped in and yanked it out of the hands of the CFSAC put advertised a contract for someone to do it. This ad was put up without notice to the ME/CFSAC experts of the patient advocates. As soon as the interested parties found out about this and started to oppose it,, the HHS made a choice to become even more underhanded. Instead of simply working under the radar, they announced that because of the public objection, they had canceled the process to of awarding the contract. And a few days later, we found out that the contract was awarded and the project underway. And all of this despite them saying repeatedly there was no money for research.

    I think this clearly shows how far they will go. And they have made it crystal clear that they will do whatever is necessary to shut down a process that the recognized experts support. They don't even care that it is obvious that they lied to the public.
  14. Nielk

    Nielk

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    CAA posted "Clearing the Air".



    Firestormm likes this.
  15. Ember

    Ember Senior Member

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    The Clearing the Air argument is made in support of the IOM contract, designed to develop a “clinical case definition and a clear distinction from case definitions for clinical trials and research.” Yet the argument slips from discussing a “clinical case definition” to a "case definition” to advancing research "needed to identify and validate biomarkers and to provide evidence of treatment benefit:”
    Framing that argument are these statements that may be difficult to reconcile:

    I heard from about half of the signatories.... We try to understand all sides of an issue so we can provide the most balanced information and make the most informed decisions;”

    We must have the cooperation and involvement of the various federal agencies to increase research funding and achieve real progress. We can only do that if we are at the table (emphasis added).”

    Who is this "we?" Cynically, their statement would have made more sense to me had it read, “[CFIDS Association of America] must have the cooperation and involvement of the various federal agencies to increase [its] research funding.... We can only do that if we are at the table.”
    justinreilly likes this.
  16. Ecoclimber

    Ecoclimber Senior Member

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    "we believe it is in the patients best interest to continue to foster a positive working relationship with HHS and IOM. No single organization can solve ME/CFS on its own. We must have the cooperation and involvement of the various federal agencies to increase research funding and achieve real progress. We can only do that if we are at the table."

    The Real Truth:
    We have observed over the last 35 years the results of the historical track record of both the CAA and the Feds through this message of detente.

    Facts: Funding was slashed; Grants were awarded for psycho-somatic disorder research while funding for medical research were refused; The CDC, NIH, HHS refused to recognized the CCC or the ICC-ME case definition; the CDC refused to rename the illness, remove their toolkit and foster among medical clinicians CBT/GET as theraputic modalitis for our condition; this illness was placed in the Office of Research on Women's Health; held CFSAC committee meetings over the last decade with zip to show for it; huge salaries to the leadership, very little funding for research; most breakthroughs came through private donations from foundations and small NIH grants; we have seen the lack of results from the CAA unsuccessful advocacy campaign; the neutral stance for the benefit of the CAA leadership over their patients.....

    Result: Patients are treated with disdain and marginalize among the medical establishment throughout this country since the label CFS was attached to this illness. No viable medical treatment options are available other than SSRI. Not only do patients have to suffer from this illness, but also have to suffer from the arrogance and lack of empathy and compassion among those doctors who are relunctant to treat them. Patients have only a handful of medical clinicians willing to treat this illness.

    VA IOM Gulf War Contract:
    Fact: We have seen the real purpose behind the IOM contract with the Gulf War Veterans. We have witnessed the catastrophic devastation among Gulf War Veterans by eliminating their medical and disability benefits through the reclassification of their illness from GWS to CMI (Psycho-somatic disorder).18-22 suicides per day. We have seen how the panel consisted of those who were predispose to a psycho-somatic resolution. We have seen how this committe ignored the scientifc data from the Congressionally mandated Reseach Advisory Committee. We have seen how the committee votes on an impossible exclusionary statement that required a definitive causation factor to the exposure of neuro-toxins and their illness.
    http://tinyurl.com/m5rc2kx

    Vernon is proud of these facts? The CAA must be worried to come out like this! It means we are making headway toward Critical Mass!

    Eco
    Inaptitude should never be rewarded!
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  17. Esther12

    Esther12 Senior Member

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    This is a genuine query, because I realise that I may just be ignorant of something here, but why is it vital to now devise a standardized criteria to be used by all physicians and providers?

    What makes them think that they will be able to do this in a way which will not harm patients?

    Without valid biomarkers, how can they have any confidence that they're creating a criteria which will aid their identification?

    CFS is a mess, and the current confusion around criteria is a good representation of this. Some 'expert group' constructing a new criteria for use by all physicians seems really unlikely to be helpful. Research all needs to be done with an intense awareness of the limitation of the value of any of the CFS criteria floating around, and physicians should be aware of this too.

    Have they still not released this letter? It must be really embarrassing then!

    I don't really know enough about the IOM Gulf-war report. It looked bad to me (and I read a fair amount of it) and I'm not willing to give them the benefit of the doubt on this (or anything else), but I also can't be certain about my criticism of it at this point. It would be interesting to know how the CAA think it is going. Do they see the gulf-war process as a promising sign for the IOM's CFS work? Or a worrying one?
    Valentijn likes this.
  18. Nielk

    Nielk

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    Vernon said:

    Why did she feel a need to ask them that? CAA came out with their thought out and full statement of support for the IOM contract so why did they have the need to know what the clinicians were doing? Would their response affect CAA's position in any way? If not than why ask?
    She does not state anywhere that any of the clinicians asked to rescind their positions.

    This case definition is not for research purposes. The work on case definition for research is being done at CFSAC with a workshop. Nothing to do with this IOM contract.

    That's exactly why CFSAC asked them to adopt the CCC to be used immediately by all clinicians. We have it - why re-invent?

    That has really worked out well for CMI, hasn't it?

    I have to add here that I think (my personal opinion) that the CAA is really overstating their possible influence with this IOM contract. IOM was supposedly picked because they are an independent, non-government, non-profit organization. They pride themselves on their independent actions. If they do accept any influence by any patient group, government branch or any political or social organization, their independent statures will come in to question and they can't afford that.

    From the moment that this contract was signed, it is on track to be dealt with the exact same way as the GWI contract. This is the way of IOM studies. We are not going to change that. It's like a train, once it's on a track, it will follow that track. If it sways, it will derail.
  19. alex3619

    alex3619 Senior Member

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    Two clear points:

    1. We need to galvanize research so,
    2. We need to support an unnecessary clinical definition.

    The logic is clear. There isn't any.
    leela and Nielk like this.
  20. alex3619

    alex3619 Senior Member

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    The terms of the contract define what the IOM can do, limit the methods, and immunize the IOM against outside influence aside from specific stakeholder involvement that they permit. Poor terms in this contract will derail it, period. That starts with the initial one we know about. They are to define a single case definition for ME/CFS. Sure they are to allow subgroups .. but defined how, on what evidence?

    Of course similar criticisms can be directed at the CCC, which is a single case definition. The difference is that the researchers using the CCC are well aware of subgroups and their importance, and the science behind it. It is not clear this will be the case with the IOM.

    Their directive/goal, the experts chosen, and how evidence is permitted or weighted may predefine the outcome regardless of the integrity of those doing the study. This is not a question of IOM integrity, its a question of whether or not the approach is valid for this situation. I don't think it is.
    SOC likes this.

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