After months of hard work from #MEAction, #MEAction Network UK, and many others including advocates, government officials, lawyers, and PACE experts, a group of concerned global citizens have crafted a petition to the UK government to stop graded exercise therapy trials in ME/CFS. If this petition reaches 10,000 signatures from UK citizens, its content will have to be addressed by the Government. The team has also crafted a global support petition, an explanatory website, and an FAQ about the creation of the petition itself.
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Learn more below:
Advocates were moved to action by MAGENTA, a trial of graded exercise therapy for children with myalgic encephalomyelitis, conducted in the UK. A feasibility trial on 100 children began last year and is likely to lead to a much larger trial.
Modern research show abnormalities in ME patients’ energy production systems including research demonstrating that cellular metabolism is dramatically slowed. This indicates that ME patients cannot generate the resources to exercise as MAGENTA and other graded exercise studies recommend. Telling a child with an energy metabolism disorder that if she is more active, she will gain the ability to do so without damage is like telling a diabetic that if she consumes more and more sugar, she will be able to eat cake. It is like advising someone on the verge of bankruptcy that their problems will be solved if they spend more and more money at a time.
[pullquote align=”left” cite=”” link=”” color=”” class=”” size=””] “It is, of course, completely unacceptable that any study should justify itself based on the uninterpretable findings of the PACE trial.” — Vincent Racaniello, Professor of Microbiology and Immunology, Columbia University [/pullquote]The MAGENTA researchers justify a trial in children on the basis of the 2011 PACE trial, which has been featured on Retraction Watch and is notorious for its flaws. It has so many problems that a group of over 40 scientists and clinicians — including specialists in child medicine — have published an open letter saying that PACE’s “major flaws… have raised serious concerns about the validity, reliability and integrity of the findings”. These flaws include but are not limited to:
- setting recovery criteria below entry criteria (patients could worsen and still researchers would label treatment as successful)
- setting recovery criteria so low that a patient with late-stage congestive heart failure would have been considered recovered
- started off with objective measures (actometers) but quickly abandoned their use in the trial
- provided promotional material about their therapies to trial participants during the trial, introducing more bias into a trial that relied on self-reported improvements
- showed no evidence of efficacy on long-term follow-up and trivial/placebo outcomes following the original trial protocol
None of this information appears in MAGENTA’s participant information sheets, raising serious concerns about whether the children in the trial, and their parents or carers have given genuine informed consent.
Please help us stop MAGENTA, and all trials of graded exercise therapy in ME.
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Visit www.stopGET.org to learn more.
6 thoughts on “Sign the UK and Global Petition: It's time to stop GET trials for ME/CFS”
What about making this a global petition? I’m a Norwegian citizen with ME. My son is very ill with ME.
Thank you for this petition ?
Hilde, if you follow the link at the bottom, you will see that there is both a UK-only petition AND a global support petition that you can sign!
Anyone can sign the global support petition, whereas only UK folk can sign the UK petition.
I am a 52 year old who had childhood ME before there was ever an ME diagnosis, and I can tell you that exercise made me worse in childhood, such that I asked for, and was given, permission to not do the required exercise in high school. No one knew why then, of course, but they believed me. I’m in the US, but would like to write a letter to someone in relation to this issue in the UK, if possible, to tell them that exercise in my childhood made me ill, well before I had any diagnosis of ME that would “bias” me. Any way I can do that? I used to work for an MP from Bradford, Yorkshire (he is no longer in office), if that helps, Thanks!
Tamesin,
There is a letter template to MPs, for which the original is on the petition info site (stopGET.org), and for which L.A. Cooper has a revised version. Here is the revised version, but of course feel free to edit / adapt:
Dear X,
I am writing to you because I am concerned about MAGENTA, a UK trial of graded exercise therapy in children ages 8-17 with ME.
Hundreds of patients have reported harm — some becoming housebound or bedbound, indefinitely — from graded exercise therapy (GET). Many prominent scientists and journalists argue that there is no correlation between participation in GET and recovery.
What concerns me most is that parents and carers enrolling their children in the trial are not being adequately notified of the potential for harm. They are being told: “We are not aware of side effects. Studies in adults have also not shown that there are any side effects.”
Please help us fight to stop clinical trials of GET for ME patients by signing this petition. We want to speak in one loud, unified voice. We want to use our numbers to demand the attention of the British government and the attention of media and health authorities around the world.
Thank you for your support!
Tamesin, you are exactly right!
I am 55 now but at 17 when I got sick they pulled me out of school and work and told me to sleep. For months. I went back to school part time with a note not to be in gym class and was told not to work until high school was out. Back then they knew something was going on and not to exert the patient.
All my life my doctor kept telling me to rest, get rest with no real explanation as to why he was telling me to do that. I couldn’t understand what was happening to me. I had to work and do normal things and didn’t even keep a heavy social schedule like my friends. In the end, it got me as my doctor retired and I fell into the hands of doctors that told me to walk, whatever you do, walk. So I started dog walking when I had to leave my job. Long story short, I am now disabled.
Please take care,
Barbe
FITNET has just been launched……….online version of MAGENTA except they did not mention the GET aspect of the therapy, but it is in the description of FITNET.
Can the petition heading be altered to include FITNET.
NO MORE CBT/GET trials no matter what they choose to call them.
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