Author Archive for Bob Miller

Madame Secretary Meet the ME/CFS Community: The $50 Million Dollar Research Funding Campaign Pt. II

ME/CFS ACTION: 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 [...]

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 [...]
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