Sunday, April 3, 2011

Irish Medical Times: The PACE study is out of step with ME/CFS

Susanna Agardy:

Dear Editor, The modest and oversold results of the PACE study (Lancet 2011 doi:10.1016/S0140-6736(11)60096-2) demand that the physical abnormalities of Myalgic Encephalomyelitis (ME)/Chronic Fatigue Syndrome (CFS) be urgently confronted by the medical establishment (‘Cognitive behavioural therapy not harmful in chronic fatigue’, Irish Medical Times, March 18, 2011,

Even the loosely-defined, highly-selected, less-debilitated sample of participants reached their limits following the ‘star’ CBT and Graded Exercise Therapy (GET) interventions.

People with properly defined ME/CFS with characteristic post-exertional malaise and lower tolerance of exercise would have sent improvement scores crashing and drop-out rates soaring. Such people were excluded and would have, in any case, refused to take part in PACE.

For me, a severely disabled sufferer, a few extra metres of walking triggers a bewildering array of symptoms, the third day of such exertion being the worst and needing about six days for any improvement.

I wish I was just fatigued!

GET treatment is not safe for us and must not be recklessly forced upon us.

The word ‘recovery’ has been given an abstract statistical definition and gives the media licence to make further exaggerations. There is no report of how many people who could not previously work returned to work, for example.

Dr Bleijenberg casts a euphoric glow over the results. His speculation about supposed CBT-related mechanisms of change sound to sufferers as appropriate as saying: ‘All we need is a better whip to flog a dead horse with, so it will run.’

It is time The Lancet regularly published and encouraged scientific research on the many seriousphysical abnormalities in this maligned illness. That would help patients. Susanna Agardy, 1 Auburn Pde, Hawthorn 3123, Australia

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