Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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National Alliance for ME-HHS/IOM Contract-Abusing the Disabled!

Discussion in 'Institute of Medicine (IOM) Government Contract' started by Nielk, Oct 22, 2013.

  1. Nielk

    Nielk

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  2. Ember

    Ember Senior Member

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    Lois Ventura can write!:balloons: Way to go, National Alliance for ME.:thumbsup:
     
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  3. Nielk

    Nielk

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    Full article:

    HHS / IOM Contract:
    Fooled Us Once, Shame On You for Abusing the Disabled!
    October 20, 2013

    The warp speed of this potential train wreck initiative whizzes light-years faster than the majority of ME and cfs patients can think, much less move. We’re sure HHS & IOM know this. (And so we continued to be abused.) Given HHS’s corruption of CFSAC’s definition recommendation, we are certain the HHS and its hired hand’s giant brushing aside of the ME & cfs community’s outcry in solidarity with our veteran experts against this contract is deliberately breakneck. This is at least as haphazard as the original CDC investigators who, in the guise of authority, bopped to Lake Tahoe and literally took a hike instead of carefully examining very ill patients and heeding the professionals who called on them for help. (Anyone remember THAT government effort? You know - the one that obliviously redefined life-robbing M.E. into the innocuous 30-year “cfs” disaster that has permanently maimed or killed a lot of good, hardworking people, abuse that continues to this day, and has been career nightmares for our dedicated doctors and researchers too? Let’s not forget about “misappropriated” (stolen) millions, other millions frittered on “CFS” branding campaigns, and fixation on fatigue rather than on wide-ranging studies on cytokines, spinal fluid proteins, organs infested with viruses, and… well, you know - all that list of grossly abnormal stuff researchers have documented in PWMEs that’s magically supposed to go away with CBT and GET.)

    NO WAY - not again! When a long list of lifelong experts state loud and clear, “FOLLOW OUR LEAD” - with hoards of beaten-down, undead patients cheering from their sick beds if they are able, only to be ignored yet again - it would be really, really naive to think good science is happening, rather than politics and backroom-ing all over again. We will not allow this to happen again! Fool us once… we’ve suffered and died for 30 years, strung along, fooled over and over.

    Well, our money’s on a more informed, outspoken generation of ME/cfs advocates – patients and researchers alike! Given its history with ME & cfs, HHS has no right to hand a million-dollar hammer to their exclusively chosen contractor to smash apart the pieces of the ME puzzle that have been rapidly amalgamating with advances in technology - clues that these experts have painstakingly pieced together for an entire generation. We question IOM’s integrity for accepting this contract. They apparently didn’t bother researching M.E.’s turbulent history before signing on. (We don’t need to question HHS. Their track record speaks volumes.) HHS may have funds on a scale that our researchers desperately need, but no amount of money gives HHS the authority to define a disease they’ve historically misrepresented, harming countless patients over decades. Definitions belong to experts in the field, authorities on the disease who have fought for nickels and dimes to bring to light the disease processes wracking our bodies. To reiterate what we’ve said elsewhere regarding HHS and its departments regarding ME (cfs): History has shown repeatedly that stakeholder input is gratuitously listened to with seeming sincerity, expert advice is solicited, then promptly disregarded as preconceived plans move ahead (or not). Fool us twice (times ten, but we’re cognitively impaired, so shame on you again, HHS & IOM, for repeatedly exploiting the disabled).

    To the HHS and its departments: Redeem yourselves and your predecessors for the lives lost and still suffering, undead, from this disease! Help, do not hinder! FOLLOW OUR EXPERTS’ LEAD!

    Open Letter to the Honorable Kathleen Sebelius, U.S. Secretary of Health
    In the mean time HHS, think about the public apology you or your successors are going to send out. (Restitution is virtually impossible, unless by that time reanimation is medically possible.)

    Request for Legal Action [See Footnote]

    It is far beyond Name-us.org’s scope and ability to set in motion legal action to cancel the contract between HHS & IOM to redefine ME. (We would be right on that if we could!) HHS could do it with the stroke of a pen, if they chose to heed our experts' sagacious advice.

    We hope (if not already in motion) ME & cfs experts can quickly organize legal action against this political – most certainly not scientific – maneuver on the part of HHS/IOM. Until we hear word of any initiation of legal action to cancel this contract, Name-us.org has posted on its homepage some email addresses of Congressmen and others. To them you can cc your support of the Open Letter to Secretary Sebelius, signed by 35 of our most respected ME & cfs experts:

    Open Letter to the Honorable Kathleen Sebelius, U.S. Secretary of Health
    Also, we’ve linked to the excellent petitions our advocates (thank you all!) have been circulating on this issue. Please sign the petitions and act in any other way you can. Nothing is too small, even if it’s just one or two sentences to your Congressmen in support of the Open Letter. (Once upon a time I had a friend who told me she called her Congressman on an issue, and when following up later, he told her if he had only heard from at least one other constituent on the matter, he would have taken action. I try to remember this lesson when writing seems too overwhelming with M.E.)
    Petitions:
    Stop the HHS-IOM contract and accept the CCC definition of M.E.
    Thank our M.E. & cfs Experts - Show HHS You Support Our Experts' Position
    Some simple immediate actions you can take:
    Intro: Experts' Open Letter to the US Secretary of Health


    Contact list to show your support of the Open Letter


    Lois Ventura
    Co-Founder
    National Alliance for Myalgic Encephalomyelitis
    Name-us.org

    Footnote [Partial quote http://www.seidmanlaw.com/Contract-Terminations/ ,
    emphasis added, and note that this firm represents the contractor!]: “Terminations for Convenience: The following is from Paul J. Seidman and David J. Seidman's "Maximizing Termination for Convenience Settlements/ Edition II - Part I," Briefing Papers No. 08-3, at 1-2, 10, February 2008:

    “ The "Termination for Convenience of the Government" clause in a Government contract conveys broad rights on the Government to terminate the contract when termination is in the Government's interest. The Government may cancel the contract simply because its needs change regardless of contractor fault. In return for this privilege, the Government agrees to pay the terminated contractor its incurred costs and certain continuing costs in a traditional Government contract. Alternatively, in a contract for commercial items or services under Federal Acquisition Regulation Part 12, the Government agrees to pay the terminated contractor the percentage of contract price reflecting the percentage of completion and charges resulting from termination.”
     
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