Archive for Advocacy – Page 4

Share The Bounty: ME-FM Action Network Teetering on the Edge of Success/Failure in Canadian ‘Share the Bounty’ Contest

Vote from now to March 29th  to help the National ME/FM network win up to $20,000 in Canadian contest. We should hope they win. This is, after all, an active group and the money will go far. The National ME/FM Action Network hosted the first IACFS/ME conference outside the US in Ottawa, 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 [...]

FDA Stakeholder Meeting For Chronic Fatigue Syndrome (ME/CFS) Set

The FDA Stakeholder Team began an effort in 2011 to accelerate drug development and discovery at the FDA for ME/CFS.  With Chronic Fatigue Syndrome (ME/CFS) the only major disorder without have an FDA approved drug, our first goal was to get the FDA to create a "Stakeholders Meeting' to clear 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 [...]

FDA Denial of Ampligen Exposes Out of Touch Agency; Hemispherx to Appeal

Hemispherx released a statement on Monday indicating the FDA had denied their application of Ampligen to treat Chronic Fatigue Syndrome (ME/CFS) because of lack of   'substantial' proof of efficacy and (rather ominously) because  they did not have enough data to assess safety concerns. The 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 [...]