• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

197 Professionals and Advocates Send New Letter to Sebelius

slayadragon

Senior Member
Messages
1,122
Location
twitpic.com/photos/SlayaDragon
A new letter dated December 26, 2013, has been sent to Secretary Kathleen Sebeliius regarding the government's attempts to re-define ME/CFS.

>This letter repeats the request from the previous letter from experts and from the previous letter from advocates that the Department of Health and Human Services (HHS) adopt the Canadian Consensus Criteria (CCC) for the disease, rather than having the Institute of Medicine (IOM) develop a new definition.

>The letter also states specific objections to the provisional slate of committee members announced to the public by IOM; asks for an increase in government funding for biomedical research into the disease; and requests that the government consistently call the disease by its proper name, Myalgic Encephalomyelitis (ME).

>The signers of this new letter include fourteen of the individuals who signed the “experts’ letter” as well as the majority of those who signed the “advocates’ letter.”

http://paradigmchange.me/wp/?p=334