'Why won't they believe he's ill?'

Long dismissed as 'all in the mind', ME is now officially recognised as a physical illness. So why can patients still not get the medical help they need? By Jerome Burne

A favourite horror-movie plot is the one in which the heroine thinks something bad is going on in the house, but nobody believes her. She becomes more worried about the noise in the attic, which her husband blithely dismisses as "wind" or "rats".

For more than a decade a version of this scenario has been played out between many of the patients who have a disabling disease called CFS/ME (chronic fatigue syndrome/myalgic encephalomyelitis) and the medical profession. While they are convinced they have a definite physical disease that involves, among other things, serious malfunctioning of the immune system, mainstream doctors say they can find nothing physically wrong and refer them to psychiatrists, who treat them with gradual exercise and a form of psychotherapy.

"You can't believe how maddening and frustrating it is," says Jane Bryant, a PR consultant whose 13-year-old son Ben was diagnosed with CFS/ME several years ago. "He was a bright, happy, healthy boy and then overnight, following a viral infection, he developed this terrible fatigue, with other really worrying symptoms. He is quite clearly ill. Yet the official line about children like him is that he needs to be given psychiatric treatment and got back to school as soon as possible.

"It's ridiculous. No child who isn't phobic - and Ben obviously isn't - would deliberately keep themselves at home for years at a time. It's just too boring. But the prevailing psychiatric wisdom is that thousands do just that." And, because the problem is said to be psychological, almost no research into the physical difficulties of these patients has been conducted in the UK, making it very hard to develop physical tests or treatments.

This might be dismissed as the understandable complaints of a mother worried about her child. But that line is much harder to take now, thanks to an obscure amendment announced in February in the House of Lords by the Health minister Lord Warner. CFS/ ME, he said unambiguously, is a neurological disorder, not a psychiatric one.

The ruling has galvanised many in the CFS/ME community into mounting a fresh challenge to the psychiatric approach. To begin with, questions are being asked about the value of two large clinical trials into the effectiveness of treatments for CFS/ME. Funded by the Medical Research Council (MRC) at a cost of more than £2.5m, the trials are just getting under way.

"Whatever their findings," says Dr Vance Spence, Senior Research Fellow at Dundee University and a leading scientist in the field, "they won't tell us anything useful about the best way to treat CFS/ME because they are not properly selecting patients with the disease. There is widespread concern about this." At a debate called Science and ME at the International Science Festival in Edinburgh last month, Spence described new research that could allow CFS/ME patients to be properly identified.

CFS/ME affects more than 100,000 people in the UK, more than have MS (multiple sclerosis).Symptoms include bouts of incapacitating exhaustion after even the slightest activity, together with malaise and nausea. They have disturbances of major body systems - guts, bladder, heart, breathing and balance - and suffer painful muscles, aching joints and swollen glands. Some recover within a year, but many find that the symptoms linger for decades. About 5 per cent become bedridden, and one-third resort to using a wheelchair at some stage.

A campaigner who has long opposed the purely psychiatric approach is scathing about the MRC trials. "They are a farcical, cynical exercise and a huge waste of money," the Countess of Mar said. It was her questioning in January of the Government's position in a Lords debate on CFS/ME that prompted the recent announcement.

To understand why a definition is arousing such passions, it is necessary to delve into the World Health Organisation's International Classification of Diseases. This is what your GP relies on to decide whether a patient has, say, a psychiatric disorder, such as depression or anxiety, or a neurological disorder of the brain - which might well share some of the symptoms - such as Parkinson's disease.

In the WHO system, neurological disorders are listed in section G93.3, psychiatric ones in F48.0. The confusion the Countess of Mar raised was that CFS/ME had been wrongly listed in both sections by the psychiatrists. On the one hand, ME has always been listed in the neurological section, but chronic tiredness - something many psychiatric patients suffer from - is listed in F48.0. "What has been causing confusion for years," Lady Mar said, "is that psychiatrists who specialise in chronic 'fatigue' talk about it interchangeably with CFS and in the same breath as ME. Now we know that's inaccurate and misleading." CFS/ME is only a neurological condition.

The implications of clearing up this ambiguity could be huge, not least an end to the dismissal of the condition as psychosomatic. Take this,attributed to a psychiatrist: "I will argue that ME is simply a belief, the belief that one has an illness called ME."

The two MRC trials are designed to compare the effectiveness of the different forms of treatment used by psychiatrists. Any clinical trial has to decide which patients to include and exclude - the criteria. Including everyone with the symptom "headache" in a trial for a migraine treatment would render it useless - drugs for migraine won't help a flu headache. Critics such as Vance Spence say the MRC trials are, in the same way, mixing all sorts of patients with chronic fatigue.

They are using what are known as the Oxford criteria, developed by psychiatrists in 1991. "They are rather outdated now, and I don't think they are used anywhere else except in the UK," Spence said. To be eligible for the trials, you have to have had six months or more of medically unexplained, severe, disabling fatigue affecting physical and mental functions.

Critics say that not only do the Oxford criteria let in people with chronic fatigue and depression, but they exclude people with physical signs of organic brain disease or neuromuscular disease: precisely the sort of symptoms found in people with a neurological disease such as CFS/ME.

An MRC spokesperson said: "People with CFS/ME have a broad range of vague symptoms, so it is best to be as inclusive as possible. The criteria for the trials have been judged appropriate by international experts to give robust scientific answers. Once people have been included they will be assessed by other, more narrow, criteria. We will be able to identify sub-sections and see how they respond to the different treatments." But Jane Bryant, who runs a web-based pressure group called One Click, says: "What is the point of trying to identify sub-groups of CFS/ME patients, having excluded them in the first place?"

She points to other, more detailed, sets of criteria, such as those published last year by the Canadian government. This stresses the importance of a range of definite physical problems. Drawn up by a dozen eminent clinicians, the Canadian Definition states that a diagnosis requires not only that the patient becomes ill after exercise, but must also have "neurological, neurocognitive, neuroendocrine, dysautonomic and immune manifestations".

Jane Colby, the director of The Young ME Sufferers Trust, has reviewed this enthusiastically. "If the Canadian Definition were to be taken into widespread use, it would be much harder for people with chronic fatigue to be categorised along with those who have true CFS/ME." The MRC says it is seeking new research proposals, and there is no reason why projects using the Canadian Definitions should not be accepted in future.

A major problem has been the lack of a clear biological marker for CFS/ME, such as a blood test, to distinguish those who have it from those who don't. However, a promising line of research to develop a test was the topic of Vance Spence's talk in Edinburgh. His team at Dundee have found that the blood vessels of CFS/ME patients are unusually sensitive to a transmitter in the nervous system called acetylcholine. The difference can be measured with a laser.

In a paper, he says this test can distinguish between different patient groups, all of whom suffer chronic fatigue. "Patients with chronic fatigue syndrome and Gulf War syndrome, and agricultural workers with organophosphate exposure (OPE), all have fatigue symptoms that can't be distinguished under criteria the psychiatrist use. But when we ran the laser test on them, distinct differences emerged."

Testing to distinguish different subgroups of patients has not been part of mainstream CFS/ME research in the UK to date, but the G93.3 decision suggests it should be urgent. "This is not an obscure debate among academics," says Spence. "The care patients receive is largely determined by the diagnosis they're given. Lumping widely different patient groups together on the basis of a number of ill-defined, non-specific symptoms has contributed to the opprobrium and frank contempt CFS/ME sufferers have received from healthcare professionals."

This is relevant to a major government initiative specifically designed to help patients with CFS/ME. The Department of Health is spending £8.5m setting up centres to provide specialised care and support for these patients. At the moment, however, they are mostly being staffed by psychiatrists who will use the Oxford criteria to decide who will be treated with cognitive behavioural therapy. Many patients with the neurological disorder CFS/ME don't believe they will be significantly helped by this approach.