M.E. scandal surrounding ME/CFS.

THE SCANDAL SURROUNDING M.E.

The illness Myalgic encephalomyelitis (M.E.) is a relatively uncommon disorder characterised by fatiguability, muscle pain and a severe, flu-like malaise. There are also other symptoms e.g. profound problems with concentration and memory, loss of balance, visual disturbances and emotional lability. However, what makes M.E. so unusual is the fact that symptoms tend to fluctuate quite markedly, not just from day to day but also from hour to hour.

Studies into M.E. and related disorders (chronic mononucleosis, chronic Lyme disease etc.), have suggested that the symptoms may be caused by ongoing pathology affecting primarily the muscles and the brain. Unfortunately few doctors in the UK know about this research. In fact, few doctors know about M.E.! What has stopped the information getting through are a handful of doctors with a profound lack of interest in accuracy, a number of editors who have turned a blind eye to their biased and erroneous accounts of the illness, and the fact that there is nowhere for scientists to complain about such unprofessional and unscientific behaviour.

How a small number of doctors stopped colleagues diagnosing M.E..

They adopted the term chronic fatigue syndrome which can refer to M.E. but also to fatigue due to depression, chronic stress, allergies, Lyme disease and a host of other ailments. Since the majority of patients with CFS suffer from emotional problems and maladaptive lifestyles (e.g. lack of exercise, boredom, mood disorders etc.), doctors assume that this is the main cause of CFS and treat all patients accordingly. No attention is paid to the one or two per cent of CFS patients whose illness does not fit the above explanation and who may suffer from a persistent infection, a damaged blood-brain barrier or faulty metabolism (CFSUM1?).
Editors of certain British medical journals have favoured a psychiatric explanation for many years and have been clearly biased towards articles favouring this approach. For instance, for three years up till July 1995, all studies published by the BMJ strongly supported a psychiatric view*. What's more, all BMJ leaders since 1991 have been written by people who did not believe in the existence of M.E. as a distinct clinical entity with an 'organic' cause. One of the authors had published no research on the subject at the time of writing and was not recognised as an expert in the subject. Two others were very new to the area and had only just begun research. In short, the message which British doctors are getting is very one-sided and misleading.

Science or propaganda?

The fact that a lot of scientific research is inconsistent with the information published by British medical journals doesn't appear to matter much to the editors. Gone are the days of rigorous peer review when experts went through articles, checking every sentence and every statistic. Gone are the days when it was considered unprofessional to publicly insult colleagues who held a slightly different view. Read articles on CFS and you'll find libel, wild speculation, misinformation and distortion. Basically, writers have been allowed to deliberately and consistently misinterpret the existing research, misrepresent the views of the M.E. specialists, and ignore all important findings which conflict with their own. The editor of the BMJ was informed several years ago that his referees were below par, but things did not improve.

Here are some examples of the bias, distortion and inaccuracy in British articles on M.E. and CFS. I've included the references so you can check the papers for yourself.

First of all, here are two cases showing the writers' clear lack of knowledge and sympathy (read prejudice). These type of comments have led to the stigmatisation of the illness and turned a debilitating disorder into a trivial complaint which few take seriously:

"In my opinion, CFS patients tend to be young to middle-class members of the professional classes, mostly female, who expect to feel 100 per cent, 100 per cent of the time and who, in this era of consumerism, expect their doctors to be able to ensure this ..." (Pulse November 10th 1990.)

"It is an escape route for the middle classes, especially teachers and paramedics, such as physiotherapists, occupational and speech therapists ... My experience of M.E. sufferers is that they suffer triumphantly, and that their claim that the disease has ruined their lives is not to be believed". (Medical Monitor, 14th February 1992.)

Other articles have portrayed patients as people who don't wish to face up to their emotional problems, as wimps suffering from tiredness and other comparatively trivial complaints such as worry (e.g. Lancet 1993, 342, 1247). The message is that these patients are stupid, prejudiced against mental illness and that they exaggerate their disability.

As I mentioned above, doctors won't be aware of the opposing arguments. Of course, M.E. specialists have written letters correcting the errors and challenging the myths, and occasionally, these are actually published. However, editors (and referees) don't seem to take any notice of the correspondence and leader writers have dismissed the specialists as gullible and naive individuals with simplistic views, or third-rate scientists with little understanding of immunology or psychiatry (e.g. BMJ, 1994, 309, p.275).

Some efforts to discredit the opposition are subtle but still get the message across, as this comment in a book review:

"Some chronic fatigue syndrome specialists ... seem to regard antidepressants as suitable only for the morally infirm" (Lancet, 23rd October, p. 1039).

A researcher who has specialised in the illness for about ten years told me that she had never come across a colleague who holds such views. A letter challenging the claim was not published.

Of course, the patients and the patient groups have objected to the misinformation but the totally negative stereotype of sufferers and the discrediting of the M.E. Associations means that virtually no one believes them. Indeed, the medical publications have gone so far as to accuse the groups of giving inaccurate and unhelpful advice and of making patients worse. For example, an editorial in the BMJ strongly implied that the advice given by patients groups was associated with poor outcome (March 19th, 1994). It's another case of lies, damn lies and statistics, but few people reading the BMJ or Lancet will ever know.

As a scientist, the appalling bias in reporting the results of research and the large number of erroneous statements in the medical journals has distressed me the most. For instance, when one uncontrolled study with an astonishingly high drop-out rate found that psychiatric treatment helped 70-80% of patients with chronic fatigue, the BMJ's Minerva column mentioned the results of that research, but not the flaws. She also ignored the fact that two better-designed and controlled trials had not been able to confirm the superiority of this approach.

Another example can be found in the Lancet (27th May 1995, p. 1333). In a study on chronic fatigue, researchers identified just 6 patients with pure CFS. However, the small sample size did not prevent them from drawing very firm conclusions about the role of psychiatric factors in CFS.

Incidentally, 99% of the factual errors have supported the psychiatric view of M.E.. For instance, one doctor reduced the duration of the Royal Free epidemic by more than two months so it fitted in nicely with examples of mass hysteria (Psychological Medicine 1987, 17, 109).

All this misinformation affects both the patient and the GP. All around the UK, unsuspecting general practitioners are trying to persuade their patients that they must see psychiatrists, take anti-depressants and ignore their fatigue when exercising. But this approach is as appropriate for most cases of M.E. as it is for MS. When the treatment fails, the patient either accepts what their sceptical, disbelieving GP says (and get depressed as a result?), or they look elsewhere for help and support. That's why M.E. has become a haven for quacks and other purveyors of instant cures. It doesn't reflect the average patient's IQ, just their desperation.

People have tried to do the 'right thing' and informed those who 'need to know'. A colleague of mine asked a member of the GMC whether she could make a complaint but he told her that she'd be wasting her time. They do not have rules about telling the truth or treating colleagues with respect. An official of the Royal College of Psychiatrists was informed that colleagues were misleading all and sundry but his response implied that since one or two symptoms of M.E. were psychiatric, accuracy didn't matter. Journalists were told and they still invited the doctors concerned to express their views unchallenged.

An independent report revealing the extent of the bias and poor science in the British journals has been ignored and dismissed. So has the government-funded Task Force report, which produced a reasoned and fair assessment of the problems facing patients and researchers today.

In my view, the lack of interest in accuracy is incompatible with good science, let alone the Hippocratic oath. However, without some kind of independent authority which can investigate unprofessional practises and act on the results, these abuses will go on.

Be sure to see the many other valuable articles at our Main M.E. Home Page

The editor of the BMJ has responded to the criticisms levelled against the journal (Editors choice July 1st 1995). He denied a bias in favour of the psychiatric theory and claimed that they were simply trying to choose "the best" of all the articles submitted. As indicated above, the best meant a lot of errors, several cases of libel and since 1992, the publication of just one study challenging the psychiatric approach.