Myalgic Encephalomyelitis

Part of the debate – in the Scottish Parliament at 5:19 pm on 23rd January 2002.

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Photo of Margaret Smith Margaret Smith Liberal Democrat 5:19 pm, 23rd January 2002

I thank Alex Fergusson for securing the debate, for his speech and for his contribution to the cross-party group on ME. I welcome the ME sufferers who are with us. We can only imagine how difficult it must have been for many of them to take the trouble and the time and to make the effort to join us.

As many as 15,000 Scots have ME. Some are as young as six. A significant number are affected in their teens and early 20s. For many of them, ME means a life without work and without the relationships that could have been formed at that critical stage of their development. It is a life with little hope of recovery: there is no cure for this chronic disabling condition. Twenty-five per cent of sufferers will remain incapacitated—many are bed-bound for the rest of their lives. That is why the research that has been called for is so necessary.

The main symptoms are fatigue bordering on exhaustion, lack of concentration, sensitivity to touch, pain, light and sound and acute muscle pain. It is clear that the impacts are not simply physical: more than 50 per cent of sufferers have felt suicidal as a result of their condition.

One of the most welcome facets of the recent report of the working group in England is its recognition that ME

"is a genuine condition that imposes a substantial burden on patients, carers and families" because, for many years, elements of the medical profession and the public, reacting to press reports of yuppie flu and the like, dismissed sufferers. That continues today. Sometimes, sufferers continue to be denied the benefits they rightly need because doctors fail to recognise the existence of the condition and its impact. I associate myself wholeheartedly with Alex Fergusson's comments.

The physical impacts vary from patient to patient, which has contributed to difficulties in diagnosis, but the working report sets out that ME

"lacks specific disease markers but is clinically recognisable."

I am sure that all colleagues have received letters on the subject from constituents. In the past few months, I have met some of them to talk about the issue. The vast majority seem to have had difficulties and delay in being diagnosed. One constituent highlighted the fact that she had to wait six years. When, finally, she was diagnosed, she described it as a "turning point" from which she was able slowly to regain something like a normal life.