“CFS and ME is a serious disease or set of diseases for which there are currently no FDA approved therapies” 'Voice of the Patient' Document
The FDA's Patient Focused Drug Development Initiative marks the first time the FDA is implicitly
including patients narratives and needs into their Read more [...]
The thirty-five is now fifty...
Instead of being mollified by the DHHS working document, the effort by ME/CFS experts to rescind the IOM contract to produce a clinical case definition has actually gathered steam. The fifty ME/CFS experts signing the letter now include Dr. Lily Chu, Dr. Kenneth Read more [...]
There are videos and there are VIDEOS. This is a VIDEO.... It's a video that seeks to (and should be) a film to be more accurate. All it needs is a little help
The Kickstarter Campaign to Create the Canary in the Coal Mine Film has begun.
The 10 minute preview video is sharp, smart and creative, Read more [...]
There's alot going on right now; check out the different events in this 'Events blog'.
The National ME/FM Action Network's May 12th Awareness Day for ME/FM submission in the Aviva contest is on the edge of winning $10,000 with the possibility of winning as much as $100,000 more. Read more [...]
ME/CFS Experts Reject Federal Effort to Produce Definition
A sleeping tiger just woke up.
On the same day the Department of Health and Human Services (DHHS) announced, in the face of strenuous opposition, that they'd entered into a contract with the IOM to produce a clinical definition for Read more [...]
The Feds announced they've reversed their decision to stop the contract with the IOM to produce a definition for doctors and are continuing forward..........End of conversation.
The ME/CFS experts have been cut out; career bureaucrats are making the decisions now. This is weird and unsettling Read more [...]
This is wrong on so many levels - Mary Dimmock, advocate and mother of a severely ill son with ME/CFS
Thanks to advocates Jennie Spotila, Mary Dimmock and others for jumping on this quickly.
The Department of Health and Human Services is all of a sudden in the definition game. The cynical viewpoint Read more [...]
ATTENTION ME/CFS COMMUNITY
We the "FDA Team" are asking you to send the message below to the FDA and to listed members of Congress.
The recent patient-focused drug development meeting held by the FDA was a start - but only a start. The FDA stated that their goal was to support treatments Read more [...]