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Sunday, 4 April 2004
Myalgic Encephalomyelitis

Children with ME 'wrongly taken into care'


YOUNGSTERS suffering from ME are being taken into care and their parents accused of child abuse because doctors are wrongly diagnosing their condition, experts have warned.

Leading figures in the field of ME, also known as chronic fatigue syndrome,claim that dozens of parents are facing court action for harming their children because of a failure by doctors to accept a physical diagnosis for the illness.

Jane Colby, the head of a national charity on the illness, said a number of doctors insisted patients are suffering from a psychiatric disorder.

Ms Colby said: "Many of these children are being treated like their parents are harming them. Children are being taken into care and parents are being threatened with child- protection issues.

"The scandal is that these things are being swept under the carpet by ME organisations that don't want to rock the boat."

ME, or myalgic encephalo-myelitis, affects about 15,000 people in Scotland and is characterised by extreme disabling fatigue made worse by physical or mental exertion. Critics say sufferers are often dismissed as hypochondriacs, with some doctors refusing to accept that ME, exists.

With no cause established for the illness and no effective treatment available, many sufferers are referred to psychiatrists for therapy.

Many parents whose children suffer from ME are accused of having Munchausen's syndrome by proxy, a largely discredited theory where parents fabricate illness in their children to draw attention to themselves.

Ms Colby, who is the co-author of a major report on the illness, claims that seven out of every 100 families surveyed whose children had ME had been subject to child-protection proceedings, and that four out of every hundred had actually been labelled as having Munchausen's syndrome by proxy. As many as 5,000 children in England and Wales are said to have been taken into local authority care over the past 15 years on the strength of this diagnosis.

Ms Colby, the executive director of the Young ME Sufferers Trust, said doctors are breaching guidelines set down by the chief medical officer which stress that the illness is a neurological rather than psychiatric condition.

She alleges that a number of organisations, including Action for ME, pressurised her into playing down the statistics.

She added: "Psychiatrists seem to have a monopoly on the whole thing. The children are seen as suffering from psychiatric illness. A lot of psychiatrists believe ME is a cultural phenomenon. They do not believe that it is a medical condition."

Last night, Alex Fergusson, the convener of the Scottish parliament's cross-party working group on ME, said he is aware of cases in Edinburgh where children were taken into care in relation to ME.

He said: "I know of two cases where the parents were accused and the children were the subject of child-protection cases.

"They were forcibly removed from their homes and the mothers left traumatised."

GPs are being advised on the best treatments for the estimated 240,000 ME patients, as growing numbers of young people become affected with the illness once dismissed as "yuppie flu".

The latest research suggests that viral infections may be to blame. However, it is feared that ME clinics continue to concentrate on the so-called psychiatric features of the illness.

Last night a spokeswoman for the charity Action for ME claimed parents had been wrongly accused of abuse.

She said: "There were some horrific cases where children were misdiagnosed.

"We do not support the view that it is a psychological illness."

Ms Colby, who recently gave a speech to the parliament's cross-party group on ME, will contact every MSP this week to highlight her concerns.

ME International

Posted by peter200015 at 2:20 PM EADT
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