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
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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...
