ME patients have suffered the consequences of HHS’s policies of creating demeaning names, faulty definitions and harmful medical guidelines, the result, loss of health, job, money, credit, education, home, healthcare, disability benefits, family, friends and life itself.
We adamantly oppose CDC’s campaign to implement, disseminate, promote and code SEID. Despite mass protest and the Advisory Committee’s (CFSAC) recommendation to use our experts definition (CCC/ICC), HHS forged ahead and created a new name and definition SEID.
The basic problem for #pwME
"faulty definitions for the disease have negatively impacted, and will continue to do so, diagnosis, treatment, research, education, media reports and public policy"
(see: Eileen Holderman & Gabby Klein's open letter to the secretary US Dept of Health)