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MAME has made CFSAC meetings accessible to people with disabilities


Read how MAME has made CFSAC meetings accessible to people with disabilities. The story is in the April-May 2010 CCPD "AccessLetter"

(thanks to David P who posted this to co-cure today)

MAME (Mothers Against Myalgic
Encephalomyelitis) is an umbrella group which
advocates not only for people with CFS (PWCs), but
also for people with related conditions such as
Fibromyalgia and Multiple Chemical Sensitivity.


Senior Member
Thanks for posting this IF! I had heard a bit of this story but not the whole thing. This stood out in particular:

Nearly 2000 people watched the video of
the May 27-28, 2009 meeting within the first
few weeks; thousands more have watched since,
either from the NIH website or from copies on
YouTube. The videos can also be viewed by CFS
researchers, friends and family members of PWCs who
might not be disabled but are unable to attend the
CFSAC due to other commitments. Dr. Jones has
pledged that all future CFSAC meetings will be
videocast and archived.

Stands out in stark contrast to earlier meetings where only a handful of people showed up to watch and meetings ended early because so few people showed up to testify. It really emphasizes the need for everyone to try to participate as possible, whether merely by watching live or archived videos, writing letters, testifying by phone, or going in person. Every individual can make a difference.