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The Nightmare Scenario - IOM Case Definition Contract Terrifies ME/CFS Advocates

Discussion in 'Phoenix Rising Articles' started by Mark, Oct 28, 2013.

  1. Phoenix Rising Team

    Phoenix Rising Team

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    View the Post on the Blog

    View the Post on the Blog
     
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  2. aimossy

    aimossy Senior Member

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    signed. shared on FB.
     
  3. xxRinxx

    xxRinxx

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    Signed all and sharing on facebook too..its way too frightening!
     
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  4. Christian Godbout

    Christian Godbout

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    When in doubt, take an extreme case… Good rhetorics!
    If we are proven wrong by having overreacted, well, so what… it will pass quickly, we won't regret it for the rest of our lives.

    But if we are proven wrong by having refrained from overreacting , we will pay from hereon in, it will not pass.
    So just in case the Munch "Scream" scenario is up ahead, why not indeed go all out to stop it. We have nothing to loose by carrying out relentlessly this political action, moreover it's just for a couple of weeks.

    We will never regret having tried too hard, but we sure as hell might regret not having tried hard enough.
     
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  5. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Excellent reminder of what could be in store for us. Thank you, Gabby. Let's crush this POS contract!

    To those who say, “let’s just lie down and accept that this contract is going forward”- the 16 additional expert signatories and 66 advocate signers are more signs that we can get this contract cancelled!

    HHS has successful oppressed us for 30 years. some would say this is proof that their plans always work and we can’t stop them. But every attempt to abuse people always works… until it doesn’t. There comes a point of critical mass, a turning point where the oppressors are forced to stop because the pressure on them becomes too intense.

    This really looks like the turning point for us; our Rosa Parks moment where we say “No, we won’t go to the back of the bus any more!” that finally sparks a huge change. Never before have our experts supported us before other than one at a time here and there. NOW FIFTY SO FAR have come together to support us and say “NO MORE.”

    We have momentum now (see also that Canary in the Coal Mine has already raised $73K in just four days and there are three other ME docs in the works) This is the turning point. We can push this boulder over the hill now. Lets ALL get together and give it all, that our health will permit. NOW is the time to call in your favors and also just plain beg your friends and family to support us in crushing this contract. This is what I am doing and if we all do it, we will exponentially increase our force and become unstoppable! The AIDS patients did it. Let us do it! If not now, when?
     
    Last edited: Oct 28, 2013
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  6. Delia

    Delia Senior Member

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    Many people are on the fence, they want consensus on how to move forward and respected advocates are saying "We won't win, better to compromise now."

    But here is never consensus in advocacy. :/

    MLK had has hands full convincing African Americans to support the Civil Rights movement as much as he did convincing White America.

    Maybe in looking back people think it was what everyone wanted, but it was not. Yes they wanted to not be oppressed. Yes they wanted things better. But there was not consensus on how or when or what should or shouldn't be done.

    Even the NAACP fought it King and the SLC. It's been years since I studied the history, so I don't remember how long or what it took to bring them on board. But that was the number one, largest and National Organization at that time. That was their voice. The NAACP in effect said 'Don't do this! You'll make things worse.'

    MLK and the SLC campaigned as much to bring African Anerican people together in this as they did in non violent protest action.

    What could be worse for us?

    By resisting the IOM contract with all our might and as many numbers as we can muster we at least have a chance.

    We can be seen by America and the world! Who we are and what this disease really is.

    There is no reason to give in and give up at this point. It's not junior high. There's no reason to fear not being allowed to sit at this cafeteria table. There is no real power being offered to MEcfs advocates and experts at that table.

    Our power is in saying NO. no more.

    To paraphrase MLK, we should choose to no longer participate in an immoral system. The system falls apart without our participation: not us, we grow stronger.




    And by the way, the scenario Gabby writes about? That is my life today.
     
  7. Ember

    Ember Senior Member

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    Thanks for your counsel, Delia. Those who would offer “the middle road” at this juncture must have precious little background in bargaining. HHS has demonstrated bad faith, and the IOM isn't up to this task. The experts strongly urge HHS to “abandon efforts to reach out to groups such as the Institute of Medicine (IOM) that lack the needed expertise to develop 'clinical diagnostic criteria' for ME/CFS.”
     
  8. alex3619

    alex3619 Senior Member

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    One point I would like to expand on here: the HHS has repeatedly demonstrated bad faith, even just counting their recent actions.
     
  9. Nielk

    Nielk

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    Thank you!:thumbsup:
     
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  10. Nielk

    Nielk

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    I love the following quote by Elie Wiesel, the author and survivor of the holocaust.

    'There may be times when we are powerless to prevent injustice, but there must never be a time when we fail to protest.'

    The motto of the generation of the children of holocaust survivors is 'never again'.

    We know what happened in the past when CDC got involved with defining our illness. We had the Oxford and Fuduka criteria. The CDC has not been willing to update these criteria, regardless of the pressure by the clinicians and researchers, patients and advocates.

    At the last CFSAC meeting, when Mr. Kraftchick pretty much begged CDC to adopt the CCC now, as the IACFSME has done, Dr. Unger's answer was 'it is too complicated for clinicians to use".

    Never Again!


    I know that this scenario is already reality for many. This scenario actually pales compared to the abuse of patients in other countries. That is more the reason to fight this so strongly. Are we willing for things to get even worse? It's enough. Never again...
     
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  11. Marlène

    Marlène Senior Member

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    Chronic Multisystem Illness I read at first, oh my ...
     
  12. ukxmrv

    ukxmrv Senior Member

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    Wow, Gabby so well written.

    That's what it feels like to me as a patient living in the UK

    I don't want to see the same suffering spread to another country.
     
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  13. Nielk

    Nielk

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    Where would AIDS patients be today if they had taken the 'middle road'?
     
  14. leela

    leela Slow But Hopeful

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    Great article. However, speaking for myself, I am outraged not terrified.
    The recognition of my innate power exists in this distinction.
     
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  15. Chris

    Chris Senior Member

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    Thanks --great summing up of where we are--have signed, written to Obama's advisors (identifying myself as a Canadian in the first line, just to be clear) and will write a third letter to Sebelius--we have to do what we can. Like the others here, I have zero trust in the IOM's ability or even desire to really investigate our disease--and in any case there are many others much better equipped to do so.
     
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  16. Delia

    Delia Senior Member

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    Middle of the graveyard
    :(
     
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  17. Delia

    Delia Senior Member

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    I hope you might consider adding this to the comments over on Health Rising. A very deceptive article that sounds promising but pushes those of us who are resisting under the bus.

    You can't fight both for AND Against something.
     
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  18. snowathlete

    snowathlete

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    Thanks Gabby, for this article!

    I haven't yet, but I will write in even though I'm not American - this decision has implications everywhere on the planet.
     
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  19. Nielk

    Nielk

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    Thank you, snow
     
  20. medfeb

    medfeb Senior Member

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    Gabby,
    This is an amazing article and great way to bring the issues to life. Thank you.

    I was struck by Delia's statement - "And by the way, the scenario Gabby writes about? That is my life today." I agree that this is the ME patient's reality today and that is exactly the problem.

    The IOM Statement of Work (SOW) states that ME/CFS "shall be used to refer to Myalgic Encephalomyelitis (ME), Chronic Fatigue Syndrome (CFS), Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS), Neuroendocrine Immune Disorder, and other terminologies in use for this illness."

    But what do these terms mean and what illness is HHS talking about?

    Dr. Unger and some members of the CFSAC (even voting members) view “CFS” as a condition of fatigue plus any four of the other symptoms where PEM is optional. At the last CFSAC, Dr. Unger even rhetorically asked "If a patient doesn’t have [post-exertional malaise], would you not manage them as a CFS patient?” There are CDC statements that all CCC, Fukuda, Oxford and ME-ICC describe the same set of patients and statements that recommendations from Oxford studies – aka chronic fatigue - can be appropriately applied to ME patients. Evidence based reviews like the Cochrane review, which concluded that CBT was the appropriate treatment for CFS only required studies to have 6 months of debilitating fatigue, regardless of what definition was used. Then there is HHS’ recent reclassification of CFS as being a subtype of chronic fatigue in the ICD-10-CM - a decision that is in direct conflict with World Health Organization standards that classify CFS as a neurological disease.

    So what exact condition or set of conditions does HHS intend to create a definition for?

    HHS could have chosen to be very precise on this point. But instead, HHS' SOW for the IOM is stunningly vague about the scope of diseases and conditions that the contract will cover. We can only conclude that HHS has designed this contract to create one clinical criteria for all the conditions that fall under the "CFS" label. Based on what HHS has said - and not said, this contract is not designed to create a definition for the neuroimmune disease characterized by PEM, cognitive dysfunction, etc.

    It wont matter what experts are on the panel if they are told that the scope of their work is to create a definition for all conditions that the “CFS” label currently covers.
     
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