Emails Seek Equal NIH Funding for ME/CFS: 213 so far!
Patients have kicked off the email campaign for Equal Funding at NIH with a bang! At least 213 emails have been sent to Secretary of Health Sylvia Burwell and Dr. Francis Collins, Director of National Institutes of Health, since last Tuesday. Read more [...]
The Power of the P2P and IOM: Pressure Builds for NIH To Increase Research Funding for ME/CFS
Two scientific reports in two months by experts independent of the ME/CFS field say the same thing: "The committee stresses that more research is urgently needed." A window of opportunity has opened. Now Read more [...]
PART 1: Instructions to Take Action
To All ME/CFS –S.E.I.D. Patients, Family and Friends,
As most patients know the IOM and NIH P2P have released some positive findings in our disease. While there Read more [...]
A new Secretary of Health is about to be confirmed by the U.S. Senate. Sylvia Mathews Burwell is currently the Director of White House Office on Management and Budget, and she is known as effective and numbers oriented. She is also closer to President Obama than Secretary Sebelius.
Let's 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 [...]
(This is unusual...the ME/CFS community has been so good at supporting advocacy efforts that it's shocking when it doesn't happen. Last December, for instance, the ME/CFS Community so swamped the FDA during the Ampligen Advisory hearing that they broke the FDA's servers. Now, the patient input 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 [...]