Author Archive for Bob Miller

ME/CFS Patients Call To Action: Advocates Call for FDA to Hold ‘Real’ FDA Stakeholder’s Meeting

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 [...]

Oh No! ME/CFS Community MIA Thus Far on Historic Opportunity: FDA Drug Development Workshop Needs Your Comments!

(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 [...]

FDA Stakeholder Workshop in Trouble? FDA Disavowal of ME/CFS Expert Sows Concern

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 [...]

FDA Scientific Stakeholder Workshop Needs Your Input

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 [...]

Secretary of Health Sebelius Responds to Senate Majority Leader Harry Reid on Chronic Fatigue Syndrome (ME/CFS)

We thank Senate Majority Leader Harry Reid for his longtime work and support for the ME/CFS community, and especially for his recent efforts with the Secretary of Health to stress the serious unmet need in the ME/CFS community and the drastic implications of the FDA's denial of the only medicine in Read more [...]

Ending My Hunger Strike with Accomplishment

Dear Friends, 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 [...]

Hunger Striker Decries FDA Denial of Only Medicine for Chronic Fatigue Syndrome

Ask Secretary Sebelius to start NIH Clinical Trial of Ampligen Contact: Robert Miller 703-554-5575, Courtney Miller 631-834-4681 In day 8 of his hunger strike, Chronic Fatigue Syndrome patient Robert Miller decried the FDA’s decision (announced hours ago) to disapprove Ampligen, Read more [...]