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Wednesday, May 12, 1999 Published at 15:16 GMT 16:16 UK


MPs call for action on ME

Tom Clarke suffered the disease in 1992

The government has come under pressure to improve treatment for patients suffering chronic fatigue syndrome (CFS) after two MPs revealed that they have suffered from the condition.

MPs have called for measures to ensure employers and the benefits system are more sympathetic to people who suffer the mysterious condition.

CFS - or myalgic encephalomyelitis (ME) - has only been recognised by doctors in recent years, after originally being dismissed as 'yuppie flu'. Some experts still doubt it exists.

But on Wednesday, the former Film and Tourism Minister Tom Clarke told the House of Commons how - despite his initial scepticism about ME - he had suffered the condition himself.

The Labour MP told how he became a sufferer in 1992, while he was a member of the Shadow Cabinet.

His revelation came a day after Yvette Cooper - another Labour MP - spoke about how she recovered after sufferering the disease for three years.

Debilitating condition

ME first appears with flu-like symptoms, but they do not go away and, in many cases, become worse.

The main symptoms are debilitating fatigue, muscle pain, mental fogginess, painful lymph nodes and, frequently, stomach pains.

Mr Clarke told MPs: "I was very sceptical about ME until 1992, when I suddenly discovered that I myself had ME.

[ image: John Smith was described as an understanding boss]
John Smith was described as an understanding boss
"I was told, and it turned out to be correct, by the doctor here in the House and by my consultant in general medicine at Monklands Hospital that in my case ... it would probably go on for two years."

The disease had eased after 20 months, he said.

Mr Clarke said he was grateful for the "remarkable sensitivity" shown to him at the time by the then Labour leader, the late John Smith. "Not all employers are quite as enlightened," he said.

He called for more research, more understanding and a "more positive approach from people like me who once were sceptical".

Benefits system attacked

Liberal Democrat MP Paul Burstow attacked the benefits system's approach to the disease.

He said sufferers were often left feeling as if they were being treated as "malingerers".

[ image: Paul Burstow criticised an uncaring benefits system]
Paul Burstow criticised an uncaring benefits system
"We need clarity over the definition of ME ... and more sympathy in the health and benefit systems," he said.

Labour MPs Ian Gibson and Bill O'Brien also both called for more understanding.

Tory health spokesman Alan Duncan said the illness was "pretty mysterious territory" but stressed his party condemned those who were "tempted to mock ME".

Public Health Minister Tessa Jowell said the Government was funding research projects, and a working group on ME, chaired by the Chief Medical Officer, was due to report next year.

"We will then, on the basis of the CMO's report, issue advice to the NHS that will improve the quality of support and in turn the quality of life for the people who suffer from this awful and debilitating condition."

Sufferers face hurdles

Mavis Moore, chief executive of the ME Association, told BBC News Online that sufferers did indeed get a rough deal from the benefits system.

She said that ME sufferers had to undergo medical tests to qualify for Incapacity Benefit, and, because medical opinion was divided, they often failed.

"Many cases fail on application, fail on review and have to go to tribunal.

"But there is a trend in the last six to 12 months of people failing even at tribunal and having to be referred to the Independent Tribunal Service commissioner."

This happened because medical evidence was ignored in favour of that from the Benefits Agency doctor, she said.

Misdiagnosis and scepticism about the disease had led to social services threatening to remove people's children in the past, she said.

"Sometimes social services will think that a child with ME is suffering a school phobia and seek a child protection order.

"This disease is causing a great deal of distress around the country."

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