Nielk
Senior Member
- Messages
- 6,970
This is advocate Eileen Holderman's comment when signing this petition:
The CFIDS Association of America (CAA/SMCI) does not speak for many in the ME/CFS community.
When founder, Mark Iverson, resigned from the organization, CAA eventually became a sub-contractor of the Centers for Disease Control (CDC) - taking millions for contracts with the Government and compromising Iverson's mission.
Today, CAA/SMCI is an arm of Health and Human Services (HHS) - not an organization that serves patients with the neuroimmune disease, Myalgic Encephalomyelitis, now numbering about 17 million worldwide.
When 50 ME/CFS expert researchers and clinicians sent HHS a letter and advised against defining the disease with IOM and urged HHS to use the Canadian Consensus Criteria (CCC), CAA's Director, Suzanne Vernon, wrote a letter to the experts to try to reverse their position - but only one did.
CAA/SMCI continues to push the HHS/IOM definition and name, despite a vast number of patients, experts, and stakeholders who oppose the definition and name.
Together, HHS and CAA/SMCI develop and endorse faulty definitions, create and propagate unscientific names for a disabling illness, recommend harmful treatments to patients, and mislead the mainstream medical profession, the press, and the public of the biomedical facts of ME/CFS.