MECFSForums Statement to IOM Meeting 1/27/2014

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Here is the IOM statement from MECFSForums, sent in written form to IOM and also presented verbally to IOM by Susan Kreutzer.

Jan 22 at 10:25 AM

MECFSForums is an internet forum for people who suffer with Myalgic Encehalomyeitis (M.E.), which is also sometimes called “Chronic Fatigue Syndrome” or “CFS” and friends of M.E. sufferers. This forum began in June 2010 and now has 6850 members. MECFSForums was not invited to present information to the IOM at the January 27 meeting. (

Perhaps MECFSForums was not invited to present because a forum administrator, Patricia Carter, created the Petition to Stop the HHS-IOM contract and accept the CCC definition of M.E. on October 7, 2013. This petition now has more than 5000 signatures. )

The Petition to Stop the HHS-IOM Contract and Accept the CCC Definition of ME is solid evidence of the position of thousands of ME/CFS stakeholders on the contract HHS has made with the Institute of Medicine to define ME/CFS--and these thousands of patients and friends oppose this contract.

A poll of the forum membership was taken asking forum members’ positions as to the IOM contract. The result was that 100% of members who voted agree with this statement: “I oppose the contract and I support the experts letter urging HHS to adopt the CCC now.”

This Statement from MECFSForums represents the views of thousands of M.E. patients, families, caregivers and friends in opposition to this IOM contract. Millions of people worldwide suffer from Myalgic Encephalomyelitis (M.E.).

For decades, sufferers have been left with no real biomedical research and no effective treatments. Now the HHS is attempting to prolong this time by contracting with the Institute of Medicine (IOM) to redefine the illness. This is unnecessary because experts in the illness, researchers and clinicians alike, have reached a consensus that the Canadian Consensus Criteria (CCC) should be used for both research and clinical purposes. They have sent an Open Letter to Secretary Sebelius expressing their support for the CCC. (See: and,_U.S._Secretary_of_Health_and_Human_Services_10/25/2013 ).

This HHS contract with IOM would simply be a waste of precious resources.

This is the text of the petition which now bears more than 3700 signatures: “We, the undersigned people suffering from Myalgic Encephalomyelitis, along with our families, caregivers and friends hereby ask Secretary Kathleen Sebelius to cancel the contract HHS signed with the Institute of Medicine (IOM) to develop “clinical diagnostic criteria” for ME/CFS. We further urge Secretary Sebelius to respect the consensus reached by a group of experts and adopt the Canadian Consensus Criteria (CCC) as the research and clinical case definition for ME/CFS.”

We ask this IOM committee to be dissolved now and we request that HHS adopt the Canadian Consensus Criteria (CCC) as the research and clinical definition for ME/CFS.

Patricia Carter, Esq.


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