To: UK government and the responsible ethics, funding, and approval committees

STOP GRADED EXERCISE THERAPY TRIALS FOR ME/CFS

STOP GRADED EXERCISE THERAPY TRIALS FOR ME/CFS

We, the undersigned, call on the UK Government and the responsible ethics, funding and approval committees, to stop trials of graded exercise therapy (GET) in children and adults with myalgic encephalomyelitis.

Why is this important?

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.


Reasons for signing

  • These trials are incredibly cruel, harmful, heartless and poorly conducted from a social and scientific perspective. Science should help, not harm.
  • Exercise is harmful to people with ME. Especially those with undiagnosed POTS.
  • For the obvious reason that GET (and CBT) do harm - as demonstrated by real research. What annoys me most is that those who suffer ME and involve themselves in this type of research do a disservice to the rest of the ME community where this has been a contentious issue for 20 years or more and scratching the surface of this issue it is easy to see the moral and financial corruption of those involved in the psychosocial field of research who ignore the proof of bio medical research.

Updates

2016-09-13 02:16:19 -0400

1,000 signatures reached

2016-09-12 16:02:22 -0400

500 signatures reached

2016-09-12 13:20:25 -0400

100 signatures reached

2016-09-12 13:01:18 -0400

50 signatures reached

2016-09-12 12:48:37 -0400

25 signatures reached

2016-09-12 12:41:11 -0400

10 signatures reached