Skip to main content

StopGET - petition against unethical research trials of Graded Exercise Therapy on children with M.E.


Sign this petition to prevent risk to children's health from an unethical research trial


Imagine you get a mysterious and highly debilitating illness. It takes away much of what you love in your life. Your doctor says there may be a treatment that can help. It’s not a drug but a behavioural reprogramming therapy developed by psychiatrists. It’s safe, she says. And proven to be effective in a study published in The Lancet.

Sounds odd, but you go ahead with the therapy with an open mind. It consists of getting you to gradually increase your activity levels and exercise. Not only does it not improve symptoms but the behavioural regime prescribed actually makes your illness worse. Your therapist is unsympathetic and says you are showing a negative attitude and that your entrenched belief system is what is keeping you ill. When you become so ill you can’t physically get to the clinic any more, your therapist berates you for not complying with the treatment, and strikes you off their clinic register.


This is what happened to me at age 19. The treatment was Graded Exercise Therapy (GET) for Mylagic Encephalomyelitis (M.E.), also known as chronic fatigue syndrome (CFS).


Had I been a few years younger, the outcome could have been a lot worse than being left severely disabled without any medical care. My therapist could have alerted my Local Authority, who could have investigated my parents for neglect of my medical care because they stopped bringing me to clinic appointments. At worst, I could have been locked in a psychiatric institution for enforced “treatment”, as happened to Sophia Mirza, who died following her ordeal.


GET has been prescribed for children and adults with M.E./CFS in NHS clinics for years, but now a research trial is seeking to prove its effectiveness in children.


Why StopGET?


· GET is currently being trailed on 100 children with M.E./CFS in a study called MAGENTA, with a view to a much larger trial in the near future.


· There is overwhelming anecdotal evidence of harm and increased disability resulting from GET in adults and children.


· The consent forms for the MAGENTA trial do not disclose the significant risk of harm from GET.


· The evidence base for the efficacy of GET in adults with M.E./CFS has now been demolished. The Lancet has faced calls from 40 scientists worldwide to retract the controversial PACE study which wrongly claims 60% of patients improve with GET.


· 121 Families who withdrew from, or refused, GET for their children have faced investigation for child abuse or neglect. To date, none of them have been found at fault.


· M.E./CFS is the most common cause of school absence in children.


GET may help some individuals with a diagnosis of chronic fatigue syndrome. But in a survey by the ME Association, 74% of respondents reported that GET made their M.E. worse, leaving some people dramatically and permanently more disabled as a result. Current research shows abnormalities in ME patients’ energy production systems including a dramatic slowdown in cellular metabolism. This probably explains why ME patients cannot generate the resources to exercise as MAGENTA and other graded exercise studies recommend. GET is based on a psychosomatic, or "cognitive behavioural" model of M.E. which is no longer sustainable.


At the moment there are no biomarkers to distinguish which group of patients may benefit from the treatment, and which group may be harmed by GET.


None of the information concerning possible risks 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.


Sign and share the petition to #stopGET now! http://www.meaction.net/2016/09/12/uk-and-global-petition-its-time-to-stop-get-trials-for-mecfs/

Comments

  1. No-one should be treated as you were.
    It is time to #StopGET
    xx

    ReplyDelete

Post a comment

Popular posts from this blog

Sickness and the Social Model of Disability

This is the first part in a series of blog posts that will explore the uneasy relationship between chronic illness and the social model of disability. From my perspective as a Sick person (more on that controversial word next time) I will explore why people with chronic illness often feel excluded from the Disability Rights Movement (DRM) that emerged out of the social model. But rather than reject the social model I’ll discuss how we, the Sick community, could claim it for ourselves and what a social model of chronic illness would look like. The crucial distinction between impairment and disability lies at the heart of the revolutionary Social Model of Disability that emerged in the 1970s – the model that underpins the disability rights and independent living movements. To paraphrase it simply, impairment is loss of bodily function, whereas disability is disadvantage imposed upon people with impairments due to hostile social attitudes or inaccessible physical environments. 

The future of assessments and social security for disabled people

This is a slightly edited version of notes for a presentation to the ESA roundtable meeting chaired by John McDonnell MP on 29th November 2018. The content is based on previous research work with Spartacus Network, independent research into ESA and the WRAG, research on Access to Work, as well as current research with the Chronic Illness Inclusion Project. The current benefits system was identified as the biggest source of social oppression faced by CIIP participants. We recently completed focus group on designing better social security for people with energy-limiting chronic illness. Introduction The first part of this presentation is four main principles for a new assessment framework. A set of tests that any new system must meet if it is to restore the Human Rights of disabled people. The second part covers points for further discussion. Highlighting areas of current debate and disagreement. Principles 1: Overturn the ideology behind the Hostile Environment, restore digni

And now, for my latest trick

I am the lucky owner of a fab new powered wheelchair. And my new trick is that I am an ambulatory wheelchair user. That means, sometimes you'll see me sitting in my wheelchair, and sometimes you'll see me walking. This causes a great deal of social awkwardness, consternation and even shock. People seem to think I'm leading a double life. So I'll explain how it works. Little Britain 's Andy and Lou sketch: making part-time wheelchair users into a laughing stock. If you see my in my chair, thank you for your concern, but I have not just had an accident or broken any bones. And, thankfully, my condition is no worse than it has been for the past few years. If you see me walking, I have not suddenly been graced by a miraculous recovery. I still have the same crappy chronic illness I've had for 30 years. Neither am I using my chair to get attention or to pretend to be more disabled than I am in order to get some kind of advantage over everyone else - lik