Mary Schweitzer Goals submitted for CFSAC meeting May 27-28, 2009

Discussion in 'Fibromyalgia Main Forum' started by simpsons, May 20, 2009.

  1. simpsons

    simpsons Member

    posted with permission from mary

    Here are the goals I have sent in as part of my testimony to the CFSAC meeting. I will be testifying in person on May 27, sometime around 11:20 am. I will not be able to get in everything I wrote in the 5 minutes allotted, but I intend to at least read these goals into the minutes:

    1. End the current CDC program on CFS and burn the questionnaires.

    2. Return to the goals expressed in the 1994 Fukuda study: Focus on identifying subgroups using objective biomarkers.

    3. Abandon the psycho-social approach to focus on biomedical answers. Quit hiring British psychiatrists (who use a completely psychiatric definition) as consultants to CDC for CFS.

    4. Make public the testing and treatment that those of us who are paying cash can get, so that others have a chance at diagnosis and treatment. The easiest way to begin would be to adopt the Canadian Consensus Definition and Protocol for ME/CFS.
    See <>.

    5. Ask for equitable funding for our disease. The U.S. spends less than $10 a year per patient, far below the amounts for cancer, AIDS, and heart disease.

    6. Adopt the WHO diagnostic criteria and recognition of Myalgic Encephalomyelitis (M.E.) in neurology. Share this information with neurologists!

    7. HHV-6 encephalitis, intended to describe an adult condition, now has its own ICD-9-CM code, 049.8. Perhaps you could share that with physicians. See: <>

    8. Please take note of the report that a group of us prepared for the Obama-Biden transition team, "HCCD Report Delaware 19711." It is available on the website: <>

    9. Most important of all, CDC should quit trying to re-invent the wheel. Establish Centers of Excellence and fund those that already exist. The Whittemore-Peterson Institute is a perfect model of research complementing care. Dr. Nancy Klimas will be re-establishing a clinic for similar purposes in Miami this summer. That would be two. How many centers do patients with cancer get? Remember, there are one million of us.

    The rest of the written testimony is available at my new ME/CFS Community blog:


    Mary Schweitzer
  2. AuntTammie

    AuntTammie New Member

    with all the points made here.....esp those re: looking further into subgroups, and funding other researchers, rather than continuing to reinvent the wheel and further muddy the waters in the process
  3. simpsons

    simpsons Member

    yes mary is a great advocate for us

    i really hope they listen to her too.

    especially that there are tests. i wonder that maybe we can.t see the wood for the trees. there may not be one specific test for all sub groups or even different stages of ME. However there are tests that can be done to identify ME the bodys response and presence of viral/bacterial or environmental factors

  4. AuntTammie

    AuntTammie New Member

    I totally agree about the much as I want there to be a diagnostic test, I have been concerned for awhile about this: since there are different subgroups and different causes, etc, there might also need to be different tests (the idea that one test will be used to diagnose all cases could actually lead to a lot of false negatives and more people being told that it is all in their heads, bc the test showed nothing, when in fact, it's just that they belong to a different subgroup or something)
  5. simpsons

    simpsons Member

  6. simpsons

    simpsons Member

  7. simpsons

    simpsons Member

  8. skeptik2

    skeptik2 Member

    I'd really like these to stay on the first page.

  9. jasminetee

    jasminetee Member

    I love Goal #1: End the current CDC program on CFS and burn the questionnaires.

    "Come on Baby, light my fire!" :D

    That comes to mind from this video

    Hey, maybe everyone that attends the CFSAC Meeting should hold up lighters in solidarity to help achieve Goal #1.[This Message was Edited on 05/26/2009]