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Friday, 11 January, 2002, 13:42 GMT
M.E. treatment 'must improve'
M.E. can be a debilitating illness
Doctors must recognise M.E. as a genuine illness and bring it "in from the wilderness", experts have said.
The debilitating condition, otherwise known as chronic fatigue syndrome, has provoked intense controversy, with some doctors arguing that it is not a bona fide clinical illness.
"The report confirms that CFS/ME is a debilitating and distressing condition affecting many people"
Professor Sir Liam Donaldson
It was disparagingly referred to as "yuppie flu" and some people with the condition received little help, being told simply to pull themselves together.
But a report compiled for the Chief Medical Officer for England Professor Sir Liam Donaldson, says the "yuppie flu" perception had been "completely debunked".
He said CFS/ME should be classed as a chronic condition with long term effects on health alongside other illnesses such as multiple sclerosis and motor neurone disease.
Early recognition, treatment guidelines and better research are all key to improving the management of this condition, the report said.
Above all, said its authors, patients with CFS/ME wanted to be listened to and taken seriously.
Its recommendations include:
Patients must be diagnosed earlier and given better access to treatment
A programme of research on almost all aspects of M.E. is required
Health service commissioning must ensure that local provision for M.E. patients is explicitly planned and properly resourced
The education and training of doctors, nurses and other healthcare professionals should include CFS/ME
People who are so severely affected that their disability renders them housebound should have their specific needs met through appropriate domiciliary services
The National Institute for Clinical Excellence (NICE) will also be asked to draw up guidance for the treatment of the condition. M.E. affects up to four people per 1,000 in the population.
Young at risk
It most commonly affects those aged between 20 and the mid-40s.
Children who develop the condition tend to do so between 13 and 15.
"The failure to take M.E. seriously has blighted the lives of thousands of desperately ill people"
More women than men are affected.
There has been some controversy over areas of the report, including the naming of the condition.
Clinicians prefer chronic fatigue syndrome, whereas patients term it M.E (Myalgic Encephalomyelitis) because they believe the term fatigue is considered demeaning, because it is another term for simple tiredness.
The reports authors say it should be known as CFS/ME.
Sir Liam said: "On the whole, it has been a disease in the wilderness.
"Patients suffer their symptoms being ignored, not being taken seriously, labelled as hypochondriacs, urged to pull themselves together."
He added: "The report confirms that CFS/ME is a debilitating and distressing condition affecting many people.
"The causes of CFS/ME are not fully understood. The working group report is a sound basis from which we can start to make improvements in the care and treatment of people with CFS/ME."
Sue Firth who has a severe form of the disease, has been confined to bed for eight years.
She welcomed the report, and told the BBC: "Hundreds and hundreds and thousands of people out here who are affected, but because we don't die. we're not particularly important."
Anthony Pinching, deputy chair of the CFS/ME Independent Working Group which wrote the report, and a professor of immunology at Barts and the Royal London: said: "This is one of the beastliest conditions I know.
Professor Anthony Pinching: 'at the moment we don't give patients a good deal
"At the moment, we don't give patients a good deal, and then they are left to cope with this alone, and left to suffer.
"There is a lot of catching up to do."
He said he hoped patients would no longer have to travel long distances and endure long waits for treatment because of the lack of specialist care for CFS/ME.
The charity Action for M.E. welcomed the report as a milestone.
Chief executive Chris Clark said: "The failure to take M.E. seriously has blighted the lives of thousands of desperately ill people - as the report itself says 'inaction due to ignorance or disbelief in the condition is not excusable'.
"We urge the Government to act on the report's recommendations, channelling resources into the NHS that have been scandalously lacking in the past."
The M.E. Association called the report a "wake-up call for the entire medical profession".
But Dr Charles Shepherd, medical adviser for the association, said: "There are going to be some people who are disappointed with certain aspects of the report.
"It does not, for example, solve controversies such as what is the cause of CFS/ME - but this was not the remit from the CMO."
It was quite good really, the news story has pictures of my Dr who was quoted in the article, Prof. Antony Pinching. The full report can be read here and may be slightly boring/long-winded/dull etc.
But it's positive, at least UK people are not just looked at as being insane. (The numbers of people sick with it, has grown a lot over the years! Something like 1/12 people in high school are said to have it).