Archive for Ampligen

Treatment and Hope: Dr. De Meirleir on 20 Years of Treating Chronic Fatigue Syndrome and the Hope for the Future

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 [...]

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 [...]

Patients Give FDA the Scoop on ME/CFS in First Day of FDA Stakeholder Meeting

"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 [...]

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 [...]

Kelvin Lord Returns: “Having A Regular Day”

(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 [...]

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 [...]