NICE guideline: response to Dr Mark Porter, London Evening Standard

The ME Association have responded to Dr Mark Porter’s ‘Medical Notes’ column in the London Evening Standard on November in which he welcomed the inclusion of cognitive behaviour therapy as a treatment for ME/CFS in the clinical guideline on ME/CFS, which was recently published by the National Institute for Health and Clinical Excellence (NICE).

London Evening Standard – November 20

WORRY OVER ME CARE IGNORES REAL ADVANCE

Dr Mark Porter’s Medical Notes

I have been surprised by the response to new guidance from the National Institute for Clinical Excellence (NICE) on how best to manage chronic fatigue syndrome/ME. I thought patient groups would have welcomed official confirmation that this is a real, and often very serious condition, and that most cases can be helped through a combination of interventions which includes psychotherapy (cognitive behaviour therapy).

Not so. The inclusion of CBT has upset some campaigners who are concerned that it will reinforce the misconceptions that CFS/ME is principally a psychological problem.

It is not "all in the mind" but like any long term illness CFS/ME can have major psychological repercussions. How would your state of mind be if you had been literally housebound for months?

There is no clear barrier between psychological and physical illness, it is a continuum that we can ignore at our peril.

Psychotherapy, such as CBT has been used to help people with a range of primarily physical problems, including intractable pain, MS and cancer, and while no panacea, it does seem to help a significant minority with CFS/ME. As such its inclusion in the NICE guidance should be welcomed.

 

The ME Association has responded by sending the following letter to the London Evening Standard today:

Sir

 

RE: WORRY OVER ME CARE IGNORES REAL ADVANCE (Dr Mark Porter’s Medical Notes: 20 November)

 

Dr Mark Porter has missed the point about why ME (myalgic encephalopathy/encephalomyelitis) charities are opposing the NICE (National Institute for Health and Clinical Excellence) guideline.

 

Of course, we welcome the conclusion from NICE that ME is a serious and disabling illness – as this is consistent with the World Health Organisation classification of it being a neurological disorder.

 

And nobody would dispute the fact that psychological treatments such as cognitive behaviour therapy (CBT) can sometimes help people cope with the emotional distress that may accompany any serious physical illness, including ME.

 

But in the case of ME, NICE are recommending that CBT or graded exercise treatment should be the only forms of specific treatment for everyone in the mild to moderate category – even though patient evidence submitted to the Chief Medical Officer’s report found that these expensive courses of treatments are often ineffective (67% in the case of CBT) and may even be harmful (50% in the case of graded exercise).

 

If everyone with cancer was being offered CBT as the only basic treatment option available they would be horrified.  Exactly the same logic applies to people with ME.

 

Incidentally, the British Psychological Society, who represent psychologists using CBT, have also criticised the inflexibility of the NICE guideline.

 

Dr Charles Shepherd

Honorary Medical Adviser, The ME Association

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