PACE Trial: People with ME Debate
Full Debate: Read Full DebateDepartment: Department of Health and Social Care
Alex Sobel
Main Page: Alex Sobel (Labour (Co-op) - Leeds North West)Department Debates - View all Alex Sobel's debates with the Department of Health and Social Care
(6 years, 2 months ago)
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Carol Monaghan
Absolutely. The public perceive it as mere tiredness, but it is so much more than that. The debilitating pain that ME sufferers experience is something that we all should be aware of.
The participants in the PACE trial received a range of different treatments, including cognitive behaviour therapy and graded exercise therapy, where patients were encouraged to become physically active and then increase the activity’s intensity. Unbelievably for a trial this large, none of the groups was given specific medical interventions. The results were published in The Lancet in 2011, with the contentious claim that CBT and GET brought 30% of patients back to normal, while 60% improved. The media reported that all ME sufferers had to do to recover was exercise. However, the report was immediately questioned by the patient community. How could exercise, the very thing that was known to worsen symptoms, actually help?
Alex Sobel (Leeds North West) (Lab/Co-op)
My friend Jo from Leeds wrote to me:
“I’ve had CFS/ME for 25 years. I’d had it for 10 years before it was diagnosed. When I was diagnosed in Sheffield I was told there was literally no service they could refer me to and relied largely on a local support group. I was told by a Leeds GP to ‘just get on with life’ despite trying to hold down a professional job and look after a young child.”
That is a typical story of somebody with ME.
Carol Monaghan
I thank the hon. Gentleman for his intervention. It is typical, because the PACE trial had such publicity and was lauded by many as the answer. One participant in the original trial has contacted me:
“I was determined to be a part of the...trial because I wanted to get better—so if this ‘treatment’ could make me better I wanted to give it the chance to do so. I was assigned Graded Exercise Therapy. It never occurred to me that it would actually make me more ill. Nor did it occur to me that decline would not be documented, and that despite patients not recovering (or in some cases worsening), they would publish that the treatment was successful...It was stressed that I would only get better if I tried harder, and even though the graded exercise was clearly making me worse, my struggle and pain was dismissed.”