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Let's brainstorm a letter to Congress, the Pres, Sec. Sebelius, etc

Discussion in 'Action Alerts and Advocacy' started by Jessrose21, Nov 8, 2009.

  1. Jessrose21

    Jessrose21

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    Farmington, NY
    I need some help brainstorming exactly what to put in my letter to Congress, the President, Sec. Sebelius, Tom Freiden, and whomever else I think of! Here are my ideas so far:

    1. Federal Approval for Diagnostic Testing for XMRV is urgently needed. Congress needs to put pressure on NIH to make this happen.

    2. More funding for XMRV research from NIH to the Whittemore Peterson Institute. Congress needs to act to make this available asap. If there is going to be any progress toward a cure for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome more funding is needed. Given the new information about XMRV as a possible causative agent, it is urgent that adequate funds be allocated.

    3. Alert gov't officials to the fact that CDC research is using the Wichita and Georgia cohorts that use Reeves' definition of CFS which is going to skew research results. They MUST use Mikovit's exact method of choosing test subjects using Fukuda and Canadian Consensus definitions, as well as her method of finding the retrovirus.

    4. The national blood supply must be protected. Screening for XMRV needs to start asap

    5. No government funding should be made available for research using the Reeves (2005) empirical definition of Chronic Fatigue Syndrome. This definition has been shown to include many people who do not have the illness that has traditionally been called Chronic Fatigue Syndrome or Myalgic Encephalomyelitis and should be abandoned. Any research done on the larger group defined by the Reeves definition will merely be confusing and will be a waste of taxpayer money.

    6. The current leadership at the Centers for Disease Control that is responsible for research into the causes and potential therapies for Chronic Fatigue Syndrome has wasted the limited funds available for CFS in a misguided attempt to redefine it. Meanwhile, there have been no advances made by the CDC in our understanding of the disease Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. The leadership should be replaced.

    7. The proposed CDC 5 year plan should be abandoned and replaced with real research looking into a biological cause using the Canadian definition. A good place to start would be to replicate the recent Whittemore Peterson Institute research.


    Anything I've left out? Anything you think I should leave out? (Some of the info here was taken directly from another member's post who gave permission to use it. I wish I could remember where I saw it and give credit, but I can't seem to find it.)

    Thanks for your input and feel free to use any of this info in your own letters. I plan to send a copy of this letter to all my local news stations, newspapers, friends, and cable news stations. I encourage you all to do the same!
  2. markmc20001

    markmc20001 Guest

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    great ideas.

    Somebody mentioned before that giving "CFS" a new name makes sense. I like that idea.

    However, I think the WPI or somebody is calling it XAND now? I can't remember, but seems better than CFS.

    Mark

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