• STOP GRADED EXERCISE THERAPY TRIALS FOR ME/CFS
    Hundreds 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.
    5,134 of 6,000 Signatures
    Created by L.A. Cooper Picture
  • Misleading PACE claims should be retracted
    The UK’s £5 million PACE trial has been hugely influential in bolstering the view that CFS (chronic fatigue syndrome) patients can recover if they gradually increase their activity, despite widespread reports of harm [5]. This view informs how patients around the world are treated in the media, in medical practice and by society. It is crucial that misleading claims of recovery do not stand.

 "All the issues with the trial are extremely worrying, making interpretation of the clinical significance of the findings more or less impossible.” – Emeritus Professor Jonathan Edwards of University College London 

Claims have been made in The Lancet and Psychological Medicine that a substantial proportion of CFS patients in the PACE trial recovered after a course of cognitive behavioural therapy (CBT) or graded exercise therapy (GET). However, the claims are based on criteria that were revised after the study was already underway. These new criteria included “normal ranges” for fatigue and physical function that are so broad that patients could at the end of the trial have physical function similar to someone with congestive heart failure — and yet be classed as “recovered”. 

Being as disabled as patients with congestive heart failure [6] simply isn’t good enough to count as recovery of physical function for patients with chronic fatigue syndrome. READ MORE: http://www.meaction.net/background-to-the-petition/ [1] http://bit.ly/1Rexu6L [2] http://bit.ly/1PUEyHm [3] http://1.usa.gov/1iioqBz   [4] http://bit.ly/1PRcpBK [5] http://bit.ly/1Mtu8yM [6] http://1.usa.gov/1iioXDC Editor's note: We use here the term "Chronic Fatigue Syndrome" (CFS) in line with the PACE trial authors' terminology and use of the Oxford Criteria.
    12,377 of 15,000 Signatures
    Created by ME Action Picture
  • Fund research into CFS/ME and educate health professionals.
    So that CFS/ME sufferers can finally be taken seriously and understood. To stop so many people with this illness taking their own lives. To get the medical and financial help for people with CFS/ME
    827 of 1,000 Signatures
    Created by Jacquie Cooper