Dr Charles Shepherd comments on Wednesday’s You and Yours

With any pre-recorded media interview you end up recording far more material than can be used on the programme.

For the benefit of anyone who is interested in today’s CBT debate the notes below were made at the time and refer to specific points that I made about the background and use of CBT in ME/CFS.

Some of these points were included in the programme. Others were obviously not.

My main disappointment was that Professor Baker from NICE was not asked the difficult question as to where is the money, and the cognitive therapists, going to come from if everyone with mild or moderate ME/CFS (ie around 200,000 people) is going to be offered CBT or GET at a time when some of the existing specialist NHS services for people with ME/CFS are actually being cut.

Dr Charles Shepherd
Hon Medical Adviser, ME Association

ME Association website:

Personal programme notes follow:

1 Firstly, I’m obviously going to be critical about psychiatrists so I’d like to point out that:

I’ve worked in hospital psychiatry – and made use of behavioural therapies

Psychiatric illness is real and horrible – so there’s no intention of belittling psychiatric illness

The argument with the psychiatrists is about the way in which some of them are trying to turn an illness classified as essentially neurological by WHO (in ICD10; G93:3) into a psychosomatic illness.

2 The basis for CBT:

This is essentially a psychological treatment for mental health conditions – depression, obsessive disorders, phobias etc.

CBT is based on the idea that these illnesses are largely maintained by what are called abnormal/negative/unhelpful illness thoughts (the cognitive part) which lead to abnormal/negative/unhelpful behaviour (the behaviour part).

In other words there is no underlying organic disease process. The illness is a essentially a behavioural problem

3 CBT treats cancer and other physical illnesses – this is being disingenuous

CBT is sometimes used as part of the management of cancer, MS etc – normally for people who are having difficulty coping with their illness.

It is not a primary form of treatment for serious long term medical conditions.

If a patient with cancer went to a cancer specialist and was just offered CBT as the primary form of treatment they would be horrified

4 The evidence for CBT in ME/CFS

Overall, the evidence is inconsistent, uncertain and weak.

Some research, often in highly selected patients with research defined CFS, and often carried out by CBT enthusiasts in psychiatric referral units, has indicated some people with CFS gain some benefit.

But other research, including the most recent paper on group CBT, has found no real benefit.

Patient evidence that was submitted to Chief Medical Officer’s report found that:

67% reported no change; 26% felt worse; only 7 % felt better.

5 The NICE recommendations regarding CBT and GET are seriously flawed

The guidance states that everyone (ie around 200,000 people) with mild or moderate ME/CFS should be offered a course (ie 12 to 16 sessions) of CBT or GET by a properly trained therapist.

The cost of a session, including training the therapist, initial assessment, admin etc, is going to be around £100 – making a total cost of somewhere around £200 million.

Where is this money going to come from when existing ME/CFS services are being closed or are under threat, and when the government has indicated that there is no money available for new ME/CFS services.

And where are all the extra CBT and GET therapists going to come from?

Lord Layard, government economist, wants to create an army of newly trained nurses, psychologists and social workers to fill this gap. These professionals all play a useful role but they cannot take over the basic management of a neurological illness.

6 Mind – Body is a two way street

Nobody would dispute that the mind and body interact and that people with serious long term illnesses can go on experience depression and emotional distress.

If these occur in ME/CFS, which they undoubtedly can, then they need to be addressed – but they are not the underlying cause of the illness.

BIOPSYCHOSOCIAL is a meaningless fence-sitting expression that ought to be drowned.  All illnesses (even the common cold or a broken leg) can have physical, social, and psychological components.

There are times when doctors have to come off the fence and decide whether an illness is basically psychological or physical.

7 What do people with ME/CFS really want?

Physician led centres providing multidisciplinary care and advice
Advice on all aspects of management – activity in particular – depending on stage and severity
Symptom relief: in particular pain, sleep disturbance, autonomic dysfunction
Help with other key aspects: education, work, benefits

8 ME and CFS

The medical profession renamed and redefined ME in the late 1980s to create a wide spectrum of patients with differing clinical presentations and pathological explanations.

At one end of the CFS spectrum are those with chronic fatigue that is indistinguishable from a psychiatric illness. At the other end are those with no psychopathology.

It’s rather like saying that everyone with arthritis – osteoarthritis, infective, lupus, psoriatic, rheumatoid etc – has the same symptoms and underlying pathology and so can be treated in the same way. They don’t and they can’t.

No wonder we are in this awful mess.