Wednesday, January 19, 2005

The MEA criticises new CFS/IBS paper in BMJ

The following item was posted 28th May 2004 at the website of the M.E. Association in England:

'General practitioners' perceptions of chronic fatigue syndrome and beliefs about its management, compared with irritable bowel syndrome: qualitative study'

Published in the 28 May 2004 edition of the British Medical Journal

Abstract of research sent to medical journalists:

Researchers analysed group discussions between 46 general practitioners in England, based on a series of clinical scenarios involving patients with chronic fatigue syndrome or irritable bowel syndrome.

The participants tended to stereotype patients with chronic fatigue syndrome as having certain undesirable traits. Patients with chronic fatigue syndrome were seen as failing to conform to the work ethic and lacking in stoicism.

In contrast, patients with irritable bowel syndrome "seem to battle through it" and were rarely "debilitated to such an extent that they were off work."

Even though GPs recognised that both conditions were influenced by a combination of biological, social and psychological factors, many did not consider referral for mental health interventions because they were unfamiliar with the interventions or thought them unavailable or unnecessary. Mental health interventions may help patients who have not responded to management in primary care.

These findings indicate that general practitioners' perceptions about patients with either condition may be a barrier to effective management, say the authors. To overcome these barriers, doctors must recognise their deeply held beliefs that mediate their understanding of complex disease mechanisms. Such a change in perceptions will need to be supplemented by the establishment of locally available effective interventions.


Rosalind Raine, MRC Clinician Scientist, Department of Public Health and Policy, London School of Hygiene and Tropical Medicine, London, UK

Nick Black, Professor of Public Health Research, LSHTM

Simon Carter, Lecturer in Sociology, LSHTM

Tom Sensky, Professor of Psychological Medicine, Imperial College of Science, Technology and Medicine, West Middlesex University Hospital

Also available at the BMJ website here. (If this link fails, please use and follow 'current issue' then 'press releases'.)

Full paper available at:

Comment from The ME Association:

At a time when people with ME/CFS are becoming increasingly disillusioned with the fact that no government funding via the Medical Research Council is being directed at trying to find the underlying causes of a serious neurological illness that is thought to affect around 200,000 adults and children in the UK, The ME Association believes that this research is yet another example of the way in which funding is being wasted on studies that are of no real value to patients.

We have three major criticisms of this study:

1 The research does not tell us anything that is not already known about the attitudes and prejudices of some doctors towards patients with ME/CFS

For doctors, ME/CFS is a undoubtedly a very difficult illness to deal with as there is no diagnostic test and patients under the CFS umbrella cover a wide spectrum of clinical presentations. There are also serious differences of medical opinion over the definition, name, cause and management.

But with many patients being much better informed about current research than their doctors, this should be creating an environment in which doctors and patients work together. Unfortunately, this isn't always happening in practice when it comes to ME/CFS.

Neither is it surprising to find that conflicts arise when ME/CFS patients with no mental health problems are then referred to psychiatric clinics.

2 The observations from the doctors involved repeat a number of myths and prejudices about the illness and the people who have it

Despite a clear inference in the paper that ME/CFS is primarily a mental health problem, there is in fact solid research evidence which demonstrates important neurological, immunological and endocrine (hormonal) abnormalities. The World Health Organisation classifies ME and CFS as neurological disorders under section G93.3 in their most recent International Classification of Diseases (ICD 10). And this classification as a neurological disease is also fully accepted by the UK Department of Health.

Several research studies have also examined disability and quality of life measures in ME/CFS. These have shown that the scale of impairment across a range of physical and mental activities can be just as great, or greater, than is seen in other chronic medical conditions such as heart failure, kidney disease and multiple sclerosis. So to compare the disability and quality of life of people with ME/CFS to that of irritable bowel syndrome is just not appropriate.

Equally, there is no evidence from research studies to show that people with ME/CFS have some sort of weakness in their personality or are lacking in motivation to try and get better. In fact, all the research indicates that people with ME/CFS are highly motivated towards doing anything which might help them to improve and return to their normal form of employment or education.

3 The paper does nothing to correct the myths and prejudices which it refers to

We are extremely disappointed to find that the authors have made no attempt in their discussion of the results to try and redress the myths and prejudices which are expressed by some of the participating doctors. In fact, some of their conclusions - eg 'For chronic fatigue syndrome and irritable bowel syndrome, effective management includes a discussion about mental health interventions, particularly for patients who have responded poorly to other management options' - strongly suggest that they believe it is more appropriate to be treating ME/CFS as a mental health problem rather than a neurological disease.

NB: The ME Association wishes to make it clear that the above criticisms are not intended to stigmatise people with mental health problems or those who treat them. Mental health problems are genuine and can be just as disabling as ME/CFS. What we are saying is that ME/CFS is being wrongly classified as a mental health problem by many doctors. And as result, some people with ME/CFS are being inappropriately referred to the mental health services and then experiencing adverse consequences (including loss of benefits) that are inevitably associated with acquiring a mental health diagnostic label.

27 May 2004


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