Monday, November 07, 2005

January 2002 chief medical officer recognised ME as 'a genuine illness'

Teaching Ideas & Resources - TES - The Times Educational Supplement: "January 11, 2002 was a historic day in the history of CFS/ME. Launching an official report into the illness, Sir Liam Donaldson, the chief medical officer of England and Wales, said: 'Until now, sufferers were ignored or not taken seriously, labelled as hypochondriacs, or urged to pull themselves together and get better on their own. From today that changes.'

Here was a report that, for once, did not mince words.

The report opened with the unequivocal statement: 'Chronic fatigue syndrome (CFS/ME) is a genuine illness and imposes a substantial burden on the health of the UK population.' It went on to acknowledge that 'patients, their carers, and healthcare professionals encounter different levels and varying manifestations of disbelief and prejudice against people affected by the condition'. And it reprimanded those professionals whose own scepticism had 'done nothing to dispel public disbelief'.

The biggest problem facing both sufferers and doctors is undoubtedly the lack of any definitive diagnosis or test for the disease. Despite this, said the report, it is now 'clinically recognisable', and any clinician lacking the wherewithal to recognise it should get some training, and fast....

It is so difficult to get a doctor to diagnose CFS/ME that sufferers or their parents frequently regard success as a matter for celebration. Only then does it hit them that diagnosis, while helpful, is not an end in itself, and that a cure might not be forthcoming in the foreseeable future.

...treatment is often aimed at reducing symptoms and can encompass mainstream and complementary methods, ranging through pharmaceutical drugs, homeopathy, behavioural therapies, acupuncture and diet changes.

Perhaps the most successful and therefore the most popular technique, and one which is being trialled by the Medical Research Council, is called Pacing. AYME describes this as an energy management strategy aimed at preventing patients falling into a "boom and bust" vicious circle of over-activity and relapse. "Patients alternate activity with rest, and switch between physical and mental tasks so that they do not become exhausted. Patients learn to spot the warning signs of impending exhaustion and stop activity before that point." The fact that, for severely affected patients, "activity" may mean just sitting up in bed for a few minutes, is a measure of how devastating CFS/ME can be.

According to the ME Association, only "a fairly small percentage" of people who suffer from CFS/ME manage to return to completely normal health, and the time taken for this recovery may vary widely, from months toa number of years. According to the charity, the majority of sufferers will continue to fluctuate between good and bad periods of health, with relapses often precipitated by infections, operations, temperature extremes or stressful events.

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