These presentations on behalf of all those suffering with ME/CFS, FM, Gulf War Illnesses, MCS, and related illnesses – from the recent two-day CFS Advisory Committee (CFSAC) meeting – will be posted soon on the Website of PANDORA (the Patient Alliance for NeuroEndocrineImmune Disorders Organization for Research and Advocacy at http://www.pandoranet.info).
The CFSAC is a group of experts charged with advising the Secretary of the U.S. DHHS via occasional meetings that also include brief comments from the public.
PANDORA Founder and President Marly Silverman will post presentations by:
n Cort Johnson, Founder of Phoenix Rising: A Guide to ME/CFS. See also “Cort Johnson: Making ME/CFS Research Readable and Accessible”.
n Mary Schweitzer, founder of the Disability Benefits Information Website, where users may exchange information about and link to disability resources on the Web, such as a “Disinissues” Good Lawyers List modeled after the Co-Cure Good Doctors List.
n Marly Silverman – her own presentation on behalf of all patients with “invisible” illnesses. See the profile titled “Marly Silverman – Teaching FM/ME/CFS Patients to Thrive, Not Just Survive.”
Our thanks to Cort, Mary, Marly, and all the others who were determined to speak for the patient community despite their own health issues. And to the many others able to attend only in spirit – via photographs as part of PANDORA’s Empty ChairC Project (an initiative designed to highlight the continuing lack of real-time audio or video access to the CFSAC meetings).