Letter to Sunday Times

This material will not be new to most regular readers but I wanted to share with you a letter I have just written to Brian Appleyard of the Sunday Times. It’s no good giving a link because it will be stuck behind their annoying paywall but what he said (in passing, as part of a book review) was:

“Chronic fatigue syndrome (CFS), for example, can be relieved by cognitive behavioural therapy. Oddly, some CFS sufferers don’t want to hear this because it implies their affliction is ‘all in the mind’. Perhaps they should realise that ‘all in the mind’ is rapidly becoming an obsolete or even meaningless diagnosis.”

All in all, it was quite a good piece about the power of placebos but what concerns me is that this misinterpretation of our objection to CBT is becoming widespread, to the extent that it just keeps on getting trotted out as a given without any question as to where it came from or whether it’s true. This is my own little modest attempt to hold back this tide of repeated misapprehensions:

Dear Bryan Appleyard,

I usually enjoy your contributions to the Sunday Times so I was disappointed this weekend when you repeated the assertion (which seems to be widespread in the media these days) that people with CFS object to CBT ‘because it implies that their affliction is all in the mind’. As you say, ‘all in the mind’ is pretty much meaningless given what we now know about mind and body. It makes no sense to separate the two – indeed it never has done. Yet to be honest this misguided concept is perpetuated as much by the medical profession itself as by anyone else these days.

But the reason those of us with CFS (or ME, to use the less misleading name) object to the use of CBT is nothing to do with this. It is because the primary use of CBT in ME/CFS treatment is to try to convince patients to push on and increase their level of activity in spite of worsening symptoms. If only it were possible to do so! Unfortunately the primary symptom of ME/CFS is post exertional malaise, a worsening of symptoms in general following even modest levels of activity. This has been demonstrated by the work of Prof Mark Van Ness et al, who measured a deterioration in the exercise capability of patients with ME/CFS on the second day of testing. Meanwhile Prof Julia Newton has found that people with ME/CFS produce twenty times the normal amount of lactic acid when exercising. These studies demonstrate why ignoring worsening symptoms (as recommended by this type of CBT) is potentially very damaging.

Furthermore, the PACE Trial, the principal study purporting to provide evidence for the use of CBT (and alongside it graded exercise therapy) for ME/CFS is deeply flawed, as exposed by a painstaking critique from journalist David Tuller.

The critique is very long but I recommend a quick look at the summary to give you an idea of the many irregularities which underlie this £5million taxpayer funded study. Folllowing this critique, six leading scientists wrote to request an independent reanalysis of the data from the trial. Unfortunately numerous requests for the data to be released to allow such reanalysis have been refused and for a variety of reasons, most tellingly because the researchers feared it would damage their reputation if the data ever got out.

I think this says a lot about the quality of the research which supposedly underpins the use of CBT in this respect. Incidentally, CBT can also be used in ME/CFS (as with other ‘physical’ conditions) to help patients cope with coming to terms with their illness. Most people with ME/CFS are quite happy to receive CBT in this context should it be needed. We are not afraid of ‘stigma’, just of inappropriate treatments which are potentially damaging for our condition.