Why won't they believe he's ill?

[Guest guest]

(Submitted by CFA Member, PJ)

Health: `Why won't they believe he's ill?'By Jerome Burne,

Independent, The (London) > May 2004

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

, 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 pounds

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 , 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 pounds 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.