stop Graded Exercise Trials

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“The course was very aggressive and at the time I was thirteen years old, the unbelievable chest pain and burning in my legs didn’t stop for years. It is the worst treatment I have received for my condition.”

patient survey response

Graded exercise therapy (GET) can cause ME patients serious harm: surveys show that hundreds of patients — including children — report worse symptoms after graded exercise therapy. In an ME Assocation survey 74% reported getting worse, including starting to need a wheelchair and becoming bed/housebound for years. Patients aren’t made aware of these risks and if you become severely affected there is no antidote or effective treatment available.

The therapy prescribed involves initially establishing what level of activity can be maintained. This aspect is uncontroversial and also used in an alternative, patient-preferred method of activity management called Pacing. In Pacing people stay within activity limits which don’t increase symptoms or lead to the ME defining symptom of delayed Post Exertional Malaise. Over time Pacing may involve increasing activity, but it may also involve decreasing activity depending on fluctuations in underlying health.

In contrast, graded exercise therapy is focused on increasing activity, and keeping to the routine. If you imagine the body being like a battery, someone with ME has a short battery life. With Pacing, you are encouraged to be aware of when your battery is low, and recharge accordingly. With graded exercise therapy, you are encouraged to ignore the red warning signs and keep exercising even when the battery power is in the red zone.

Graded exercise therapy is not provided with any other treatment which could reasonably be expected to increase capacity for exercise. Yet ME is known to be a disease of intolerance to exertion. In the International Consensus Criteria primer over twenty biological abnormalities are noted as associated with exercise, including in the opposite direction to healthy controls. Many ME organisations, researchers and patients have serious concerns:

“The fact is that a progressive and sometimes rather inflexible increase in physical activity, the key component to a treatment that is based on the scientifically flawed deconditioning model of ME/CFS, is just not appropriate for a significant proportion of people with ME/CFS…

If a drug treatment were causing this level of adverse reactions, then serious questions would have to be asked about its use – certainly by non-specialists.” The ME Association

Please help us stop MAGENTA (graded exercise therapy on children), and all trials of graded exercise therapy.

 

Sign the petition to suspend graded exercise trials


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