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National CFIDS Foudation stand on the IOM contract

Nielk

Senior Member
Messages
6,970
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
 

Nielk

Senior Member
Messages
6,970
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.
 

Firestormm

Senior Member
Messages
5,055
Location
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...
 

Firestormm

Senior Member
Messages
5,055
Location
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...

It was Dennis Mangan, who is on our side. Retired, now with Simmaron Research.

Thanks :)


He redid the NIH website, and they became the first federal agency to call chronic fatigue syndrome ‘ME/CFS’. - See more at: http://simmaronresearch.com/2013/10/dennis-mangan/#sthash.NBH8A8N4.dpuf