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.
US Congress: ME Patients Around the World Care About Funding EqualityIn order to fuel the research necessary to uncover causes and find effective treatments, we need Congress to fund ME/CFS at a level equivalent to that of other similarly disabling neurological diseases. With an estimated 17 million patients worldwide, the longstanding neglect of this disease is a global issue. The US has a leading role to play in the hunt for a cure. With this petition we say, the whole world is watching. ARE YOU A US CITIZEN? This is our global solidarity petition for non-US voters. If you are a US voter, search the map: http://my.meaction.net/efforts/tell-congress-to-support-funding-equality-for-me-cfs/near/new to find your local state petition. SHARE YOUR STORY We want to present our elected leaders with real stories from the lives of their constituents who have been affected by ME. When you sign, please consider leaving a comment, story, or testimonial under “reasons for signing.”