Archive for Advocacy – Page 2

Ten Years of CFSAC Has Brought …What? A Look Back By Ken Friedman P.hD

(As CFSAC kicks off its abbreviated session in webinar form, Ken Friedman looks back at ten years of CFSAC and asks what it has accomplished. Ken Friedman's own time on CFSAC  in the early 2,000's was highlighted by his dissenting report "Fish Or War'  which proposed and eventually set a new Read more [...]

Time for a Patient Revolution!

(An earlier version of this blog appeared on Phoenix Rising) 'Let the Patient Revolution Begin' A militant cry from those difficult ME/CFS patients unwilling to listen to doctors, researchers and government departments who only have patients' best interests at heart? No, this dramatic call comes Read more [...]

The Chronic Fatigue Syndrome Community Spoke…and the FDA Listened: The FDA’s Evocative “Voice of the Patient’ Document

“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 [...]

Experts Expand Efforts to Stop IOM Contract: Wanda Jones to Step In – Chronic Fatigue Syndrome Definition Controversy Continues

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 [...]

A Film on the Most Devastating Disease Your Doctor Has Never Heard Of: The Canary in a Coal Mine Kickstarter Campaign Begins

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 [...]

(A)viva ME/CFS! Contest, Your Brain for Science, Making the Invisible Visible, the Definition Question – An Events Blog

There's alot going on right now; check out the different events in this 'Events blog'. Aviva ME/CFS! 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 [...]

A Tiger Awakes: ME/CFS Research Community Takes A Stand – Blasts Federal Efforts to Create Definition

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 [...]

Feds Snub Chronic Fatigue Syndrome Community…Again: Cut Experts Out, Fund Outside Group to Redefine Chronic Fatigue Syndrome

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 [...]