ME Association: PACE Trial results are over-simplistic and dangerous

ME Association press statement on the PACE Trial results

by tonybritton on February 17, 2011:

This is a rapid response from The ME Association to results of the PACE trial, which are due to be published in The Lancet on Friday 18 February 2011.

Please note that these comments relate to the content of the embargoed press release from The Lancet.

The MEA has not yet seen the actual paper that is due to be published on Friday.

The comments below can, if preferred, be placed as quotes from Dr Charles Shepherd, Hon Medical Adviser.

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The ME Association does not accept the over-simplistic conclusions that CBT (cognitive behaviour therapy) and GET (graded exercise therapy) are safe and moderatively effective treatments for everyone with ME/CFS.

We continue to maintain that the results from large and repeated surveys of patient reporting (see additional information below) into the possible value of these two approaches to management provide a far more informed and unbiased view of both their safety and effectiveness in what is a complex multisystem disease with a wide range of clinical presentations.

Equally, we do not accept some of the seriously flawed reasoning behind the use of these two approaches to management – the PACE trial has been based on the psychosocial model of ME/CFS causation (ie a combination of abnormal illness beliefs/behaviour and deconditioning) and has failed to take any real account of the accumulating research evidence that ME/CFS is a complex multisystem disease.

There is now considerable and compelling evidence involving neurological, muscle, hormonal and immunological abnormalities to demonstrate that ME/CFS is not an illness that is caused by the CBT model of abnormal illness belief/behaviour and that deconditioning due to fear of activity is not the cause of the debilitating fatigue.

The form of adaptive pacing used in the PACE trial is not the same as the model we recommend and which is favoured by the overwhelming majority of people with ME/CFS. The form of pacing advocated by the MEA is not based on the theory that CFS is an irreversible condition and that people rigidly adapt their lives to this fact through the use of a daily diary.

The MEA accepts that CBT can sometimes be of some help to some people who are having difficulties coping with some aspects of ME/CFS. We also accept that activity management, which involves gradual and very flexible increases in both physical and mental activity, plays a key role in any management plan.

But we also feel that far too much time and money has been repeatedly spent on research into CBT and GET over the years and that the time has come to start using these financial resources to discover the underlying biomedical causes of this illness, along with really effective forms of treatment. Read more>>