Tell Ampligen Maker To Put ME Patients FirstPatients in the Ampligen clinical trial are asking for help to protest changes that will force many to stop getting this medicine. Three changes made by the drug maker threaten this clinical trial: a 167% price increase, ending the compassionate care program, and restricting access to current full time enrollees only. These changes obviously affect those who are in the trial, but they also restrict future access by many patients. We also believe that they will harm prospects for FDA approval of this first ME medication. We do not believe FDA will approve Ampligen without being face-to-face with patients who demonstrate that the medicine works for them. There are no other clinical trials for ME, and no drugs in the FDA pipeline. We know approval of the first ME medication will lead to more clinical trials and investment by the larger pharmaceutical industry. Roughly half of the current Ampligen participants have sent personal letters to Hemispherx urging them to rescind these changes, and we ask you to join us in making sure Hemispherx puts ME patients first.
STOP GRADED EXERCISE THERAPY TRIALS FOR ME/CFSHundreds of patients have reported harm — some becoming housebound or bedbound, indefinitely — from graded exercise therapy (GET). Objective criticism from scientists and journalists have argued that there is no correlation between participation in GET and recovery. Yet public resources continue to fund trials such as MAGENTA, a UK trial of graded exercise therapy in children ages 8-17. After the feasibility study on 100 children is completed, MAGENTA will likely expand to a larger trial, with more young patients recruited. MAGENTA’s public documents, including the participant-information sheets given to prospective patients and their parents/carers in the feasibility trial do not convey the magnitude of the harm reported by patients. A document addressed to parents reads “We have used both treatments [GET and activity management] in our service and we are not aware of side effects. Studies in adults have also not shown that there are any side effects.” Therefore, the children in MAGENTA and those responsible for their well-being may not have given adequately informed consent. The rationale for performing additional GET studies in ME/CFS such as MAGENTA rest on the shoulders of the fundamentally-flawed PACE trial. PACE’s flaws are so well-known and so profound that over 40 scientists and doctors, including pediatricians, have signed an open letter stating that PACE’s “major flaws... have raised serious concerns about the validity, reliability and integrity of the findings”. Thousands have demanded retraction of PACE’s “misleading” analyses and 24 ME/CFS charities in 14 countries have demanded that its data be released for reanalysis: PACE is no basis for a trial in children or adults. Please sign now, and share this petition widely. Join with us to protect our community from research that ignores the biological realities of ME/CFS and promotes a potentially harmful therapy. You can find more information at: www.stopGET.org Are you a UK citizen or resident? If so, sign this UK parliament petition: https://petition.parliament.uk/petitions/166601. We aim for it to reach 10,000 signatures — fast — which guarantees a government response.