OCT 2010 CFSAC Meeting

Discussion in 'Fibromyalgia Main Forum' started by skeptik2, Aug 10, 2010.

  1. skeptik2

    skeptik2 Member

    We must begin right now thinking about what we want to say to the CFSAC

    The NIH/FDA study will be published by then: it is rumored they found XMRV
    in 80% of CFS patients.

    The XMRV Working Group meets Sept 7th; I'm sure PH will be watching
    both the NIH/FDA study and the Working Group closely, so watch for
    their bulletins here! The results of these two events will impact what we
    want to say to the CFSAC.

    The CDC has changed their website and it is so very damaging to all
    with a diagnosis of CFS, so I am ready to tell the CFSAC in Oct. that
    I want CFS taken away from the CDC and given to the NIH for further
    research and testing. The CDC has no business with psychiatric
    illness, which is how they describe CFS, so they have no legitmate
    reason to be studying it at all, and their so-called CFS
    (which is really M.E.) program should be disbanded immediately,
    and all funding given to the NIH for CFS-diagnosed patients.

    I am also going to say I want a Congressional Inquiry into the
    purposefull cheating, lying, and pandering to special interests
    that the CDC has been involved in with regards to CFS
    investigated, and I want the CFSAC to request it from the

    What are you going to say in your statement?


  2. simonedb

    simonedb Member

    Could you please give a refresher how to participate?
    I am torn on whether to give money to caa or just focus with wpi[This Message was Edited on 08/11/2010]
  3. skeptik2

    skeptik2 Member

    In order to participate in the CFSAC meeting, one must watch for the announcement in the Federal Register that lists the date coming in October.

    An easier way is to watch the FB pages of the WPI (wpinstitute.org), Hillary Johnson's oslersweb.com, XMRV Press Releases, XMRV Global Action, and the gov't site of hhs.gov, and search for CFSAC, then Advisory Committee.

    The date will be in October, and we usually have about one month to get our statements into the director of the meeting, Dr. Wanda Jones (PhD, Public Health). One can send up to 5 typewritten pages, or if you don't have a printer, you can email it to Dr. Jones and she will get it printed and passed out to the Committee and have copies for all the attendees on tables in the room.

    One can also sign up for verbal statements (not sure if they will have to be 3 minutes or 5 minutes in length, yet), and they will put you in a queue and call you on your landline, put you on speaker at the meeting, and you can read your statement that way.

    All statements get archived and are a permanent part of the record and history of the CFSAC meetings, and the meeting invariably gets on YouTube also, by some of our very talented and enterprising patients.

    There will be postings here on PH also, so you won't miss out of the dates of the meeting and when the statements have to be submitted.

    I can't express how vital this meeting will be: there is renewed vigor in research since XMRV in CFS patients was discovered by the WPI, and it will be very important for patients to express how seriously we consider it and how we are going to be demanding immediate action for funding for research (to the WPI, and NIH especially).

    We will also be demanding that M.E. be reinstated as a diagnosable disease in our medical codes, and that all patients with a diagnosis of CFS be clinically tested for Myalgic Encephalomyelitis according to the Canadian Criteria, the Ramsey criteria, and the Byron Hyde criteria (which all are pretty much the same).

    I am requesting/demanding that CFS be taken away from the CDC and be given over to the NIH's department that studies HIV/AIDS patients, as our immune system dysregulation and neurological symptoms are a mirror-image of that disease.

    I hope this info helps all who come here...we have about 2 months, but with our cognitive and functional problems, we need to begin now thinking about this most important CFSAC meeting.

    I support the WPI and PANDORA over the CAA; I feel they are taking active steps to not only get centers open for our treatment, but they are educating the public about the very serious nature of our disease (and it IS a disease, NOT a syndrome, as the CDC has falsely claimed for 22 years.