(Yesterday we highlighted a Reuter's article that proposed that the lack of funding and drug development for ME/CFS constituted a 'market failure'. Today we hit back on this market failure with a call for a congressional hearing that asks why the FDA is not, in the face of strong Congressional pressure Read more [...]
The next topics in the ME Associations De Meirlier ME/CFS experts video series were two big ones; 'Treatment' and 'Remedy and Hope'. You can't hope to cover the panoply of chronic fatigue syndrome (ME/CFS) treatments in a short video but the ME Association team pointed Dr. De Meirleir in some 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 [...]
"There's an unmet medical need right here and there has been for a long time" Bob Miller
The first day of the FDA Stakeholders Meeting was like an patient/FDA roundtable session focusing on what symptoms are worst and what treatments worked best. It's not clear how much 'actionable' information Read more [...]
The FDA has somehow missed the fact that Dr. Daniel Peterson is an ME/CFS expert clinician/researcher. For over 30 years now, Dr. Peterson has been treating ME/CFS patients in Incline Village, Nevada, with a variety of treatments. Earlier today ME/CFS patients were told that FDA has not invited Dr. Read more [...]
Dear Patients, Patient’s Loved Ones and Friends,
Since I ended my hunger strike, I have learned that the FDA has sent invitations for the ME/CFS scientific stakeholder workshop scheduled for April 25-26th. The FDA hasn’t disclosed who it is inviting, and did not solicit input from patients. You, Read more [...]
(In 2010 Kelvin Lord dragged himself into Dr. Lapp's office in a last-ditch effort to recover his failing health. A year of Ampligen infusions and 30 plus often hilarious and poignant blogs later he signed off with a blog in Jan, 2011, "Learning to Fly Again" , charting his gains. '
He Read more [...]
We, as a community, accomplished some very important things during the last few weeks, and so I am ending my hunger strike tonight. I am committed to working with our federal health agencies to bring a stronger focus and program to bear on ME/CFS for all of us. The most important Read more [...]