August 8th, 2016: Understanding and Remembrance Day for Severe Myalgic Encephalomyelitis
Jody Smith joins with other ME voices in honor of Understanding and Remembrance Day for Severe Myalgic Encephalomyelitis.
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Action Alert: Push Increased Funding from NIH

Discussion in 'Action Alerts and Advocacy' started by JohnnyD, Mar 16, 2015.

  1. JohnnyD

    JohnnyD Senior Member

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    (I'm posting the following on behalf of my sister who has eye difficulties using computers, but an advocate nonetheless.)

    To: The Honorable Michael C. Burgess, Texas Energy and Commerce, Subcommittee on Health

    Cc: Secretary Sylvia Burwell, HHS

    Representative Beto O’Rourke, El Paso, Texas

    President Barack Obama


    From: Susan Dodson (ME/CFS patient since 1988.)


    Subject: Request for Investigation of NIH for “Malfeasance and Nonfeasance” of Serious Disease ME/CFS


    I am writing to request an investigation of the National Institute of Health for malfeasance and nonfeasance[1], for over 30 years, in providing appropriate levels of funding in research and approval of treatments for the serious disease Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS).


    I have been sick with this disease for 25 ½ years and have not been able to work since 1990. My last position was with the Texas Department of Early Childhood Intervention, in Austin.


    In August of 2013, the NIH contracted with the Institute of Medicine to:


    1. Come up with a more appropriate name.

    2. Define diagnostic criteria.

    3. Sub group patients.


    The primary conclusions were as follows:


    1. “ME/CFS” is a serious, chronic, complex, systemic disease that often can profoundly affect the lives of patients”


    2. “Remarkably little research funding has been made available to study the cause of ME/CFS, mechanisms associated with the development and progression of the disease, or effective treatment, especially given the number of people affected”


    The IOM reported up to 2 ½ million Americans have the disease but most are either undiagnosed or misdiagnosed. This is a global problem with millions affected all over the world with an economic impact estimated at 24 billion dollars annually just in the United States.


    Although I know of only one doctor in Texas, Dr. Patricia Salvato of Houston, who has provided some treatment in the past to ME/CFS patients, Cynthia Mulrow, University of Texas Health Science Center at San Antonio and Charles S. Cleeland, University of Texas M.D. Anderson Cancer Center were on the IOM committee.

    The new name is “SEID”, short for Systemic Exertion Intolerance Disease”. There are many more symptoms but the unique aspect is that patients can have severe relapses after physical, mental, emotional stress. Approximately 25% of patients are homebound/bedbound.


    ME/CFS has been allotted $5 million dollars for research by NIH compared to $6 million for hay fever and $3 billion for HIV-AIDS. Those affected by hay fever, HIV-AIDS are living normal lives; ME/CFS patients are not.


    If you ask Dr. Nancy Lee , head of the Office on Women’s Health, where this serious illness has been placed (even though 30-35% of patients are men), she will say there are insufficient researchers in the filed to provide more funding.


    This is a deliberate false statement.


    During the past three years, high level scientists at Stanford University, Columbia University, Open Medicine Institute and others have done preliminary research with private funds. They, who have gotten federal money for other diseases/projects, have consistently been denied funding for ME/CFS.


    The one treatment option, Ampligen (TLR-3 agonist, rintatolimod) has been denied by 5 different FDA committees, each applying new and different standards and requirements for approval. It has been studied by a small biotech company, Hemispherx Biopharma, since 1988 and found to be safe. It is effective in 40% of patients.


    So far, Dr. Nancy Lee has made one non-committal statement regarding the IOM report.


    Will this large group of seriously ill patients be sent into oblivion again?


    Sincerely,




    Your Name Here



    Further reading:

    Jama article: http://jama.jamanetwork.com/article.aspx?articleid=2118591

    The IOM website: http://www.iom.edu/Reports/2015/ME-CFS.aspx

    IOM press release: http://www8.nationalacademies

    “A Disease Doctors Refuse to See”, NY times 02/25/15: http://www.nytimes.com/2015/02/25/opinion/understanding-chronic-fatigue.html





    [1] Justin Reilly, patient
     
    Anne, oceiv, lindab016 and 7 others like this.
  2. *GG*

    *GG* senior member

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    Concord, NH
    Hmm, asking for transparency and a "real" investigation from this regime? Doubt that's going to happen, he is not running for office any more!!

    GG
     

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