Lipkin's Monster ME/CFS Study: Microbes, Immunity & Big Data
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Article: NIH have gotten Myra McClure, Dentists and Psychs to go to Work on You!

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Feb 5, 2011.

  1. justinreilly

    justinreilly Senior Member

    NYC (& RI)
    I've included the specialties that have to do with ME: women's health, alcoholism, dentistry and mental health. I don't see why you'd want to contact inappropriate unrelated areas like Infectious Disease :mask: or Neurology, but i listed them at the end just in case. :Retro smile:

    Office of Research on Women's Health
    Office of the Director
    National Institutes of Health (NIH)
    9000 Rockville Pike
    Bethesda, Maryland 20892

    National Institute of Dental and Craniofacial Research
    NIDCR Public Information & Liaison Branch
    45 Center Drive, MSC 6400
    Bethesda, MD 20892-6400

    National Institute on Alcohol Abuse and Alcoholism
    5635 Fishers Lane, MSC 9304
    Bethesda, MD 20892-9304

    National Institute of Mental Health
    Office of Communications
    6001 Executive Boulevard, Room 8184, MSC 9663
    Bethesda, MD 20892-9663

    National Institute of Neurological Disorders and Stroke
    P.O. Box 5801
    Bethesda, MD 20824

    The National Institute of Allergy and Infectious Diseases
    Office of Communications and Public Liaison
    6610 Rockledge Drive, MSC 6612
    Bethesda, MD 20892-6612 U.S.A.

    National Institutes of Health (NIH)
    9000 Rockville Pike
    Bethesda, Maryland 20892
  2. Mya Symons

    Mya Symons Mya Symons

    My husband, son and I sent the letters. One of the Senators in our state is on the Health Committee and the other is a doctor. (I live in Wyoming). These two (Barasso and Enzi) usually repsond to all their constituents. That's the nice thing about living in the state with the least population. Hopefully, they will listen and change things.

    Thanks for the great letter.
  3. Gemini

    Gemini Senior Member

    East Coast USA

    Agree. Tuller/Racienello make good points including the virology sep. Qualifications required for an ME/CFS grant reviewer are: Infectious Diseases, Immunology, and Neurology based on the scientific basis of ME/CFS. Reviewers and those who select them should first be required to read Byron Hyde's 700-page book The Clinical and Scientific Basis of ME/CFS edited by NIH's Paul Levine so copies should be available in the NIH library, as well as required to watch Dr. Komaroff's September 2010CAA webinar which summarizes the physical basis of the disease based on 5000 published articles.

    Dr. Komaroff cites infectious agents, immune abnormalities, brain and ANS abnormalities, energy metabloism/mitochrondria abnormalities, and genetic studies as key. In Corinne's excellent chronicles of Dr. Peterson's diagnostic work-up and treatment you see him focused on these areas. Recommendations to change the grant review process are justified by ME/CFS science from 1934 to the present. The current sep must be changed.
  4. JulieR


    I just sent the following edited version of the letter so helpfully posted above. My changes were just to keep it as focused and as easy for a harried staffer to absorb as possible. I post it here in case anyone wants to send it or a version of it:

    I am writing in response to the latest problem in the NIH's response to the severe neuro-immune disease ME/CFS.

    Decisions about grant funding for ME/CFS research are made by a "Special Emphasis Panel" (SEP), which federal law sensibly requires to be made up of people who have expertise in the field. But the new "CFS" Special Emphasis Panel (ZRG1 CFSH80) grant review committee consists primarily of psychologists and dentists who know little about the disease and have done little or no research on it.

    The following members of current panel have done no ME/CFS research at all and are therefore be ineligible to be on the panel by law:

    The following members do have some ME/CFS research, though they are far from the leading experts. While they are rather poor choices, their presence on the panel at least doesn't violate federal law:

    Dr. Friedman is the only panelist who has done a significant amount of well-regarded CFS research.

    The existing science shows that the most appropriate fields of expertise in ME/CFS are virology, retrovirology, neurology, cardiology, endocrinology, pain medicine and immunology. It is essential that we have experts from each of these areas on the panel.

    To my informed understanding, researchers with the expertise to serve on the "CFS" SEP include: Leonard Jason, Ila Singh, Anthony Komaroff, Daniel Peterson, Paul Cheney, Frank Ruscetti, Sandra Ruscetti, David Bell, Susan Levine, Joseph Burrascano, Eric Klein, Judy Mikovits, Robert Silverman, Charles Lapp, Peter Rowe, Martin Lerner, David Streeten, Dharam Ablashi, Harvey Alter, Shyh-Ching Lo, David Strayer, Paul Levine, Robert Suhadolnik, Fred Friedberg, Donnica Moore, Lucinda Bateman, Sam Chow, Alan Light, Kathleen Light, Martin Pall, Rich van Konynenburg.

    ME/CFS experts agree that the following people are inappropriate to serve on the "CFS" SEP: Deirdre Buchwald, John Coffin, Alan Dove, Brigitte Huber, Jonathan Stoye, Peter Manu, Edward Shorter, Christine Heim, any psychiatrists/psychologists from England or Germany, any scientists from the CDC or Emory University.

    Please reply with what you are doing to bring the "CFS" SEP into compliance with federal law.

    Thank you,

    Thanks everyone for their work on this.
  5. Navid

    Navid Senior Member

    great letter julie R...thank you
  6. urbantravels

    urbantravels disjecta membra

    Los Angeles, CA
    Great letter! (I hope nobody was ever seriously suggesting Alan Dove? The man has Problems. When he showed up here briefly, many of us tried to engage in good faith with him, but he stomped off again. Didn't want to get the leper juice on him, I guess.)
  7. Gemini

    Gemini Senior Member

    East Coast USA

    Outstanding letter, clear, well-written and organized.

    Proposed researchers, David Streeten who worked with Dr. Bell on blood volume, passed away some years ago. List needs to be be reviewed. Suhadolnik? Strayer?

    Drs. Chia, Montoya, Enlander might be added.

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