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TELL HHS THAT YOU OPPOSE ANY EFFORT TO REDEFINE ME

Discussion in 'Institute of Medicine (IOM) Government Contract' started by Denise, Sep 3, 2013.

  1. Bob

    Bob

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    You're not alone, Denise! Many of us don't do Facebook! I have an account but I hate Facebook!
     
  2. Bob

    Bob

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    Denise, I've taken the liberty of copying and pasting the letters from your post, and formatted them so that people will be able to read them, and copy them more easily. Hope that's OK with you.


     
    Nielk likes this.
  3. Denise

    Denise Senior Member

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    I appreciate the help with reformatting etc.
    Thank you very much Bob!
     
    Bob likes this.
  4. GracieJ

    GracieJ Senior Member

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    Thanks for all your work on this. E-mail going out ASAP.
     
  5. mezombie

    mezombie Senior Member

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    UPDATE: The first paragraph of the sample email has been changed.

    In addition, it would be helpful to use the subject heading, "Stop Your Attempts at Redefining ME" in the emails.

    Thanks to all participating in this campaign!


    Dear Secretary Sebelius,

    I understand that HHS has cancelled the IOM contract but will “continue to explore mechanisms to accomplish this work”. While I appreciate that the Department has responded to the public by cancelling this contract, I object to the Department continuing to explore other mechanisms to define criteria for myalgic encephalomyelitis/chronic fatigue syndrome”. The experts have already defined this disease.

    I am a member of the ME community and have witnessed firsthand the devastation of this disease. I am extremely concerned that you plan on doing this behind our backs with no input from us. Note that I am purposely using the term “ME” to distinguish the disease that has affected me from the overly broad “CFS”.

    Two peer-reviewed consensus case definitions, developed by experts in this disease, already exist – the 2003 Canadian Consensus Criteria (CCC) and the 2011 ME International Consensus Criteria (ME-ICC), which used the CCC as its baseline. The CCC has been used both clinically and in research. Both are accompanied by clinical guidelines for medical practitioners, and are well regarded by patients, ME doctors, and ME researchers. Given that expertly defined and accepted consensus clinical criteria already exist, anything other than officially adopting one of these definitions wastes scarce taxpayer dollars and is unnecessary.

    HHS has inexplicably refused to accept the CCC or the ME-ICC and even questions the hallmark symptoms of ME. Instead, it has promoted an overly broad view of the disease called “CFS”, which does not require the hallmark symptoms. This has confounded ME with depression, deconditioning and non-specific chronic fatigue, has severely impeded research, and is the direct cause of the medical skepticism and inappropriate or harmful treatment recommendations to which patients are subjected.

    While you no longer appear to be seeking a contract with the IOM to develop a consensus definition, the fact remains that this effort was progressed in secret, apparently for many months and without consultation with key ME stakeholders. The timing of the announcement before a holiday weekend and the short response time indicate that HHS was not looking for input from the ME experts and ME community.

    I have no confidence in the manner in which you are handling this matter, and frankly, don't see the need for anything but the obvious: Official adoption of one of the existing, expert consensus criteria.

    Sincerely,
    <Your Name>
     
    Roy S likes this.
  6. Denise

    Denise Senior Member

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    Hoping someone here can help me....
    Can the thread title be altered (and if so how) to read?

    TELL HHS THAT YOU OPPOSE ANY EFFORT TO REDEFINE ME
     
  7. Lynn

    Lynn Senior Member

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    thanks for this Denise. I sent out my letter. I did think the last sentence of the letter is very antagonistic so I changed it to:

    "I frankly don't see the need for anything but the official adoption of one of the existing, expert consensus criteria."

    Lynn
     
  8. Denise

    Denise Senior Member

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    Good for you for making the letter one you are comfortable with!
     
  9. GracieJ

    GracieJ Senior Member

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    Denise Contact Kina or one of the other moderators.
     
  10. Kina

    Kina Moderation Team Lead

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    I have changed the thread title. If you want a thread title changed immediately, it's better to contact me via Conversation or report the thread and request a title change that way. :)
     
    Nielk, Denise and mezombie like this.
  11. Denise

    Denise Senior Member

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    Thank you!
     
  12. Denise

    Denise Senior Member

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    Continue to email DHHS, telling DHHS to stop attempting to redefine ME


    Kathleen.Sebelius@hhs.gov
    CC: howard.koh@hhs.gov , txf2@cdc.gov , Tomfrieden@cdc.gov , Marilyn.Tavenner@cms.hhs.gov , margaret.hamburg@fda.hhs.gov , Mary.Wakefield@hrsa.hhs.gov , collinsf@mail.nih.gov , richard.kronick@hhs.gov , MEACTNOW@yahoo.com
    There is a Facebook event page https://www.facebook.com/events/705280782832088/ that has sample letters and aslightly different sample letter (feel free to adapt any of them) is posted below.
    Each of these letters reflects the cancellation of the proposed solicitation and urges DHHS to stop attempting to redefine ME.

    Dear Secretary Sebelius,

    I understand that HHS has canceled the IOM contract but will “continue to explore mechanisms to accomplish this work” While I appreciate that the Department has responded to the public by canceling this contract, I object to the Department continuing to explore other mechanisms to define criteria for myalgic encephalomyelitis/chronic fatigue syndrome”. The experts have already defined this disease.

    I am a member of the ME community and have witnessed firsthand the devastation of this disease. I purposely use the term “ME” to distinguish the disease that has affected me from the overly broad “CFS”.

    Two peer-reviewed consensus case definitions, developed by experts in this disease, already exist – the 2003 Canadian Consensus Criteria (CCC) and the 2011 ME International Consensus Criteria (ME-ICC), which used the CCC as its baseline. The CCC has been used both clinically and in research. Both are accompanied by clinical guidelines for medical practitioners, and are well regarded by patients, ME doctors, and ME researchers. Given that expertly defined and accepted consensus clinical criteria already exist, anything other than officially adopting one of these definitions wastes scarce taxpayer dollars and is unnecessary.

    HHS has inexplicably refused to accept the CCC or the ME-ICC and even questions the hallmark symptoms of ME. Instead, it has promoted an overly broad view of the disease called “CFS”, which does not require the hallmark symptoms. This has confounded ME with depression, deconditioning and non-specific chronic fatigue, has severely impeded appropriate research, and is the direct cause of the medical skepticism and inappropriate or harmful treatment recommendations to which patients are subjected.

    While you no longer appear to be seeking a contract with the IOM to develop a consensus definition, the fact that this effort was progressed in secret, apparently for many months and without consultation with key ME stakeholders is extremely disconcerting. In addition, the timing of the announcement before a holiday weekend and the short response time indicates that HHS was not looking for input from the ME experts and ME community.


    I do not see the need for anything but the official adoption of one of the existing, expert consensus criteria.


    Sincerely,
    <Your Name>
     
  13. Denise

    Denise Senior Member

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    Thanks very much...
     
  14. jspotila

    jspotila Senior Member

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    HHS is going ahead with the IOM contract and plans to sign in by September 30th. They are pursuing this course without any input from the voting CFSAC members, and over the objections of the community.

    I have seen the confirmation that they plan to do this. This is not a drill. This is the real deal. Our only hope is to try and stop them from signing the contract by the 30th. The fiscal year resets on October 1, and they would have to find the substantial funds all over again for FY2014.

    Details and a sample email are here: http://www.occupycfs.com/2013/09/17/insult-meet-injury/

    Mine is not the only sample email. I link to several others from that blog post. I hope you will speak up as well!
     
    Bob, Nielk and Sasha like this.
  15. Sasha

    Sasha Fine, thank you

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    I think this needs a new thread, Jennie, to bring to people's attention that there's a new action, so I've set one up:

    http://forums.phoenixrising.me/inde...o-send-hhs-re-iom-action-as-of-17-sept.25331/

    Thanks for keeping on top of this!
     
    jspotila likes this.

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