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

  • Drs failed 2 explain 2 me risks fr GET (tho having chronic illness I v well know the risks) yet I find reports of damage 2 patients treated w GET. Having severe nerve injury & ME I know fr experience that exercise is impossible 2 do. GET is being used as a means of bullying patients out of chronic conditions because ppl afflicted w these syndromes r viewed as expensive 2 keep. You'll know in yrself if yr health will allow attempting GET safely, but if not SAY NO: protect yrself.
  • There is so much evidence that M.E. is caused by physical dysfunctions in the body (hormones, mitochondrias, infections, candida overgrowth, and cells). Adding graded exercise to all of this just breaks down the body!
  • It doesnt work. ME sufferers have little if any energy because of disease and not because they are lazy. GET made me worse. When will the NHS do some proper research and treat ME patients with respect.

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