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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CFSAC Meeting Scheduled for January 13, 2015

Discussion in 'Action Alerts and Advocacy' started by Wally, Dec 18, 2014.

  1. Nielk

    Nielk

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    Barbara (DFO):
    Thanking working group for a great job.
    They will go through the entire report prepared by this working group. There will be a discussion and then vote on the final document.
     
    ukxmrv and Valentijn like this.
  2. Nielk

    Nielk

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    We're in listening mode only..
     
  3. Wally

    Wally Senior Member

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    That is correct.
     
  4. Jessrose21

    Jessrose21

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    Farmington, NY
    Thanks, Niel.
     
  5. Nielk

    Nielk

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    Anne Keith - testimony

    Reject p2p enterely -
    It's unscientific. Oxford base - relying on pace. Only our expert definitions should be accepted.
    CDC refusal to delete harmful info on website.
    Disease written with lack of knowledge is accepted but not from our own experts?
    Patients are suffering from abuse.
     
    jimells, Valentijn and Keela Too like this.
  6. Nielk

    Nielk

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    Anne keith again presenting - for Deborah Waroff
     
  7. GalaxiiGrl

    GalaxiiGrl

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    USA
    Anne Keith's statement on behalf of Deborah Waroff was cut off, blamed on bad reception. "In the interest of time" they moved on to Robert Miller's statement, in which he is singing the report's praises.
     
  8. Nielk

    Nielk

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    Robert Miller:
    30 year patient and 17 yr advocate.
    Thanks working group.
    Never seen such a report from government. The results mirror what patients and advocates have been saying for years.
    Now it's official.
    More involvement by trans - NIH. Me/CFS is physiological not psychologial.
    Asks CFSAC to include asking 25 million dollars for funding.
    We need to be united.
     
    Anne and Valentijn like this.
  9. Keela Too

    Keela Too Sally Burch

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    N.Ireland
    Will they go back for the rest of Deborah's message?
     
  10. Nielk

    Nielk

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    They did.
     
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  11. Nielk

    Nielk

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    @Denise - do you have your comments to post here?
    Thanks.
     
  12. Nielk

    Nielk

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    Eileen Holderman -

    CFSAC recommended to work on criteria starting with CCC. 50 experts and 170 advocates signed letter to adopt CCC.

    HHS forged ahead on a mission to redefine CFS with an erroneous definition.

    They recommend GE/CBT and antidepressants. They don't want to pay for research and disability.
    They will miseducate and are acting in bad faith. We are protesting this.
     
    beaker, John Mac, Roy S and 3 others like this.
  13. Denise

    Denise Senior Member

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    My comments:

    The biggest drawback of the P2P process is that the most crucial question - “Is ME as defined by CCC and ME-ICC the same as cfs as defined by Fukuda and Empirical” - was never addressed.


    Neither the evidence review nor the P2P workshop agenda were designed to examine that question and the panel was not given the information needed to enable them to make this distinction.


    This means the evidence review and panel recommendations continue equating ME and cfs. And while the reports says this illness is not psychiatric, the section on “Improve treatments ” focuses on biopsychosocial, CBT, GET and multimodal, all of which, particularly in this disease, are rooted in a belief that the disease is psychological. ME and cfs are not the same.


    As with your March 2014 Education recommendations, the CFSAC must clearly identify the illness your P2P comments refer to.


    You must urge the P2P panel to be explicit about the illness their report refers to.


    I believe the report must be strengthened by:

    • Requiring ME biomedical research funding levels to be appropriately increased and sustained long term at a level commensurate with the burden of disease.

    • Addressing the institutional barriers at NIH that have impeded meaningful engagement by any institute

    • Disowning the biopsychosocial model as it has been applied in "cfs" under the false theory that the disease is perpetuated by a fear based avoidance of activity and resultant deconditioning

    • Calling for improved treatments that do far more than address self-management and psychological therapies

    • The educational recommendation must include a specification that education uses content specific to the disease as defined by the CCC

    • Prioritizing all of the panel's recommendations

    • Incorporating a realistic time-line for implementation of the recommendations

    • AND because of the repeated lack of Federal openness and transparency regarding ME, and the decades long lack of meaningful progress, I believe the panel should include strong recommendations for congressional oversight.
    Please post your agreed upon document immediately following this meeting.


    The comments you approve today may or may not capture everything you as an individual think is important for the Panel to know. CFSAC members, you are permitted to submit comments to the Panel as an individual in addition to whatever CFSAC approves today. I hope that if you have additional or different comments on the report, that you will take the time to submit your individual thoughts to the Panel by Friday.
     
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  14. Nielk

    Nielk

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    Matina Nicholson -

    Attended one day of P2P.
    We really to define which disease are we studying ME or CFS. Jason said we need to have the right criteria before anything.
    Get is harmful. We need biomedical research. We need change..
    We heard there have been changes made to the wrkshop report.
     
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  15. Nielk

    Nielk

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    Jeannette Burmeister;

    She sent an e-mail to Barbara the report was edited (i Heard) after submission by the committee.
    she didn't get a meaningful reply. She asked again. If it's true she wants us to see both documents.
    The public need to see the edits by the government. Is the committee independent of government manipulation?
    This would be a violation.
     
    Sing, Anne, beaker and 2 others like this.
  16. Nielk

    Nielk

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    Donna Pearson will present the document for comment to P2P.
     
  17. Wally

    Wally Senior Member

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    I received the following message in response to the e-mail I sent to Paris Watson - ODP/NIH this morning (1/13/2015).
    I am currently listening to the CFSAC meeting, so I am unavailable today (1/13/2015) at 1:30 pm (EST) for a phone call with the ODP/NIH. The only time I am available tomorrow (1/14/2015) during the time period (1:00 -3:00 pm EST) Ms. Cross has provided for this phone call is 2:30 pm (EST). If there are other advocates who would like to join me in this phone call tomorrow at 2:30 pm, please PM or e-mail me at WallaceAlvinCleaver@gmail.com and I will see if a conference call can be set up for the phone call with Ms. Cross.

    Wally (Susan Kreutzer)
     
    Last edited: Jan 13, 2015
  18. Nielk

    Nielk

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    It's Impossible (for me) to follow this WITHOUT SEEING THE DOCUMENT!
     
    Anne, Kati, Valentijn and 1 other person like this.
  19. Nielk

    Nielk

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    Gabby Klein's testimony


    I have sent in as my written comment a copy of my letter to Secretary Burwell expressing my complete opposition to the P2P. I hope that you each had a chance to read it.

    I will describe some of my points in the hope of convincing you, the CFSAC voting members, to consider making an official statement of opposition to the P2P.


    The history of abuse and neglect by HHS towards ME/CFS patients is long. They have tried to blatantly deny the true severity of the biological neuro-immune disease, ME. Their means of accomplishing this included switching the original name ME to CFS and by setting the vague fatiguing criteria; the Fukuda. Since then, HHS continued their control and manipulation by consistently and stubbornly refusing to accept any newer and better defined criteria set by the ME/CFS medical experts despite the fact that historically, diagnostic criteria for diseases are created by the expert medical community, not the Government.



    At the November 2012 CFSAC meeting, voting members tried to alter this devious path by recommending that a workshop be convened of ME/CFS stakeholders to work on reaching a consensus for a case definition starting with the Canadian Consensus Criteria.


    HHS had the perfect opportunity to change their previous malfeasance and do what is right for the patient. Despite and “in spite” this CFSAC’s recommendation, HHS forged ahead with two expensive ill conceived government controlled processes – the IOM and P2P.

    .


    The P2P process should never have been used for the controversial topic of ME/CFS. In addition the parameter set by NIH for the study, doomed it to a meaningless result.


    · They lumped in all 8 criteria, as if they are of equal value.

    · They use an evidence based study which is inappropriate for this disease, ensuring the exclusion of over 1,000 studies.

    · They use a “jury model” non-experience panel with a feat to come up with a report in 24 hours.


    Not surprisingly, the resulting draft report is unscientific, disturbing and dangerous. I hope that you will join me and multitudes of stakeholders, advocates, patients, caregivers and clinicians in stating the following:



    We do not need more Government misinformation about ME/CFS which will be disseminated to physicians, health insurance carriers, the public, and the press.


    Thank you!
     
    Iquitos, Anne, beaker and 2 others like this.
  20. Nielk

    Nielk

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    They are going through all the changes they have asked for line by line from the draft report. Hopefully we will se a copy of the final revisions.
     

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