NIH/CDC: Recognize and Research ME Action

Discussion in 'Fibromyalgia Main Forum' started by Wildaisy, Jan 20, 2011.

  1. Wildaisy

    Wildaisy New Member

    New patient action posted on mecfsforums:,4976.msg54584.html#new

    Here are the e-mail addresses to send to

    You can go here for addresses and phone numbers:
    Also e-mail congress for your area if up to it: You can always forward a copy.

    We want this to go to Fauci and Collins asap.

    Cut and paste letter:

    January 20, 2011

    City, state, zip

    Kathleen Sebelius:
    Dr. Francis Collins:

    I am writing you today to ask when Myalgic Encephalomyelitis (ME) will be recognized by the NIH and CDC. ME is currently recognized as a Neuroimmune disease by the World Health Organization; I believe as a patient that it is only appropriate that the CDC and NIH follow suit. Moreover, I am also inquiring as to when research funding will be made available for XMRV associated ME and other XMRV associated neuroimmune related diseases. It has been 15 months since XMRV, the 3rd human retrovirus was discovered in patients with ME. XMRV is circulating in the US population and in the blood supply, yet no research grants are being funded. Why is this?

    Furthermore, because ME is considered a separate illness, there should be no affiliation between it and the Trans- NIH ME/CFS Research Working Group. In addition, I believe that issues regarding ME should have no affiliation with the Office of Research on Women’s Health. ME should be housed under the NIAID program where it belongs as it is not solely a women’s disease--it also impacts men and children.

    As a patient I also desire funding for biomedical research and clinical trials for XMRV associated ME, as well as other XMRV associated neuroimmune disorders. We need government sponsored clinical trials for the thousands of US patients already shown to be infected. Why is funding for biomedical causes into XMRV associated ME and clinical trials being denied? Why has the government wasted nearly $35 million that was spent on research that has nothing to do with these illnesses?

    I am requesting that the following actions be taken:

    1. Fund research into XMRV associated ME and other XMRV associated neuroimmune diseases. I also ask that clinical trials for XMRV/MLV neuroimmune conditions be implemented immediately.

    2. I ask that the accurate name of ME be applied to this disease, with the correct ICD diagnostic code listed by the World Health Organization.

    3. I ask that ME be recognized and returned to the NIAID and removed from the Office of Research on Women’s Health. ME is not solely a woman’s disease and should not be grouped into the Office of Research on Women’s Health with other women’s diseases.

    4. I request a SEP funding panel be implemented for Myalgic Encephalomyelitis.

    I hope you will give these requests the serious attention they deserve and implement the above recommendations as soon as possible. I am not affiliated with any organization. I hope to hear from you soon.

    Kind regards,

    Insert Name

    cc: Anthony Fauci
    Dennis Mangan

    Please BCC for e-mail tracking

    In case anyone prefers to telephone or fax rather than email, here is contact info:


    Sebelius: No telephone number in HHS directory
    Mangan: 301-496-9006
    Collins: 301-496-2433
    Fauci: 301-496-2263

    Sebelius: No fax number in HHS directory
    Mangan: 301-402-1798
    Collins: No fax number in NIH directory
    Fauci: 301-496-4409