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!
Phoenix Rising Adds Two New Board Members
Mark Berry introduces the new President of Phoenix Rising, Dr. Gary Solomon, and welcomes Professor Jonathan Edwards to the Phoenix Rising Board of Directors.
Discuss the article on the Forums.

CFIDS Assoc America: IOM Survey

Discussion in 'Institute of Medicine (IOM) Government Contract' started by Firestormm, Jan 11, 2014.

  1. Firestormm

    Firestormm Guest

    Messages:
    5,824
    Likes:
    5,974
    Cornwall England
    Roseblossom, Esther12 and barbc56 like this.
  2. lnester7

    lnester7 Seven

    Messages:
    1,218
    Likes:
    1,091
    USA
    I cited all my successful treatment and the tests that were abnormal. I am also making an effort not to say fatigue but saying that I have inability to produce energy on demand (until we get a better words) so it is obvious to set ME apart from regular fatigue.
  3. Esther12

    Esther12 Senior Member

    Messages:
    5,254
    Likes:
    5,429
    I do not understand the reasoning behind this, particularly as we do not currently have access to evidence which allows us to be confident that we can develop a criteria for a meaningful diagnosis.

    What if the uniformly accepted criteria is less good than one of the many currently floating about? Why would that be helpful? Do we have any confidence that the IOM process will lead to a preferable criteria to all those currently available? Also, I think that having many conflicting criteria is a good way of reminding people of our current ignorance.

    I'm really uncomfortable about the IOM process.

    I think some patient groups are living in a fantasy land, with a deluded sense of the quality of research around ME/CFS, and a failure to understand how much harm can be done by unjustified claims of expertise.
    Nielk and justinreilly like this.

See more popular forum discussions.

Share This Page