Archive for Ampligen

Hearing Requested for Denial of Treatment For ME/CFS

 Take Action       Patients Needed:               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 [...]

Congressional Hearing To Remove Roadblocks to Ampligen Approval at FDA

In talking with experts and reviewing the drugs that have been approved over the past couple of years, we believe it is our right to ask Congress to hold a hearing to review the denial of Ampligen.  Below is a draft letter along with the email addresses where the letter should be sent.  It is clear Read more [...]

FDA Approval of MS Drug Puts Ampligen Back In Play

Deja Vu? "I just try and not think about it, because it gets me furious" multiple sclerosis patient The story sounds eerily similar. Citing questions regarding study quality and side effects, the FDA refuses to approve a drug for a condition for which few or no effective drugs exist. After hearing Read more [...]

Call for Congressional Hearing on Treatment For Chronic Fatigue Syndrome (ME/CFS)

(Yesterday we highlighted a Reuter's article that proposed that the lack of funding and drug development for ME/CFS constituted a 'market failure'. Today we hit back on this market failure with a call for a congressional hearing that asks why the FDA is not, in the face of strong Congressional pressure Read more [...]

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 [...]
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