1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Can You Come for a Visit? My ME/CFS Says No
My daughter and son-in-law just had a baby last week. We are thrilled. But we won't be able to see the baby or hold her any time soon. We won't be able to take over little gifts or help out with housework or babysitting.
Discuss the article on the Forums.

National CFIDS Foudation stand on the IOM contract

Discussion in 'Institute of Medicine (IOM) Government Contract' started by Nielk, Oct 16, 2013.

  1. Nielk

    Nielk

    Messages:
    5,460
    Likes:
    5,994
    Queens, NY
    Wildaisy posted:

    http://www.mecfsforums.com/index.php/topic,18019.0.html

    The National CFIDS Foundation has been asked for our stance on the IOM
    redefining the illness of what the DHHS refers to as chronic fatigue
    syndrome/myalgic encephalomyelitis. That referral seems partricularly strange to us as
    the CDC took ME off their diagnostic code in the United States many years
    ago so no physician is able to diagnose ME although eliminating that
    terminology has certainly not eliminated the illness. It is the reason that we
    refer to our own illness (we are an all volunteer federally approved charity) as
    CFIDS and never use the CFS term since the ID (immune dysfunction) cannot
    be dealt with until a therapy can be aimed at the specific cause of the
    illness.

    The NCF is against the Institute of Medicine and their "efforts". Our
    government has already proven more than capable of ignoring scientific work with
    Gulf War Illness and given it a much more obscure name by the IOM just as a
    CDC committee did with ME decades ago and whose committee members became
    authors of the first Holmes criteria.

    Gail Kansky
    President, National CFIDS Foundation
    103 Aletha Rd.
    Needham, MA 02492-3931
    http://www.NCF-NET.org
    781-449-3535
     
  2. Nielk

    Nielk

    Messages:
    5,460
    Likes:
    5,994
    Queens, NY
    There is something you can do if you don't like or feel comfortable with what is happening with the HHS/IOM contract. Your action will make a difference. Every letter, e-mail, phone call, signing of petition matters. They all get read and there is power in quantity.

    If you would like HHS to cancel the IOM contract, please take action. Please write to your representatives in congress HERE. You can sign the petition to stop the IOM contract HERE. The petition in support of the expert's letter is HERE.
     
    beaker likes this.
  3. Firestormm

    Firestormm Guest

    Messages:
    5,824
    Likes:
    5,982
    Cornwall England
    I think it was Cort recently who interviewed some chap from NIH, who has since retired, and I'm sure I read that it was him who added 'ME' to 'CFS'. It would be on Health Rising somewhere. Last couple of days I think...
     
  4. Iquitos

    Iquitos Senior Member

    Messages:
    390
    Likes:
    588
    Colorado
    It was Dennis Mangan, who is on our side. Retired, now with Simmaron Research.
     
    justinreilly and beaker like this.
  5. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

    Messages:
    2,490
    Likes:
    1,175
    NYC (& RI)
    Glad Mangan still involved in ME research. He is a stand up guy, imo. One of the very few at HHS who tried to help us.
     
    Iquitos likes this.
  6. Firestormm

    Firestormm Guest

    Messages:
    5,824
    Likes:
    5,982
    Cornwall England
    Thanks :)


     

See more popular forum discussions.

Share This Page