Myalgic Encephalomyelitis

Part of the debate – in the Scottish Parliament at 5:12 pm on 23 January 2002.

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Photo of Janis Hughes Janis Hughes Labour 5:12, 23 January 2002

I congratulate Alex Fergusson on securing this important debate and on the work that he has done in the cross-party group in Parliament on ME.

When I spoke a few months ago in a debate on dementia, I spoke of the need for more research into the causes of that particularly debilitating condition. The need for more research on myalgic encephalomyelitis is just as great.

It is only in the past few years that people have even begun to accept that ME exists. Last week, when the UK chief medical officer, Sir Liam Donaldson, commented on the working party report, he described ME as having been

"a disease in the wilderness".

Although many influential health bodies now recognise ME as an illness, a tremendous need remains for further study into the causes of ME. Perhaps those who are still in doubt should listen to the words of Joe Kilmartin who is secretary to the Cathcart and south Glasgow ME support group, to which many of my constituents belong—several of whom have made their way through to Edinburgh this evening. In an e-mail sent earlier this week—I know that Mr Kilmartin will not mind me repeating his statement—he said:

"This illness can rob the patient like myself of life. There is no dignity in having one's 11 year old daughter cut up my dinner as holding a knife and fork is too hard, or not being able to walk to the end of the street for a paper in case I have not got the energy to get back again."

Primarily, I want to echo the comments made by Alex Fergusson and state the need for further research. We need to answer two simple questions. What is ME and what can be done about it? Without the answers to those questions, it is not possible to undertake the health needs assessment that is necessary to ascertain what represents an adequate network of services to provide help to sufferers and their families, many of whom—as Alex Fergusson said—are in the public gallery tonight.

Other questions also need to be answered. How many children and adults have properly defined ME? Is ME caused by abnormalities in the immune system? To what extent do psychological and social factors influence the outcome? Research into the basics is needed and must be properly funded.

Alex Fergusson's motion mentions the research that has been undertaken by Dr Pheby in Bristol and Dr Spence in Dundee, but we must also recognise the research that has been done by Dr Chaudhuri at the Southern general hospital in Glasgow.

It is all too apparent—I am sure that it will become even more apparent in other speeches—that funded research into the illness is needed. As a member of the cross-party group on ME, I hope to continue to support that need.

The Executive must look towards providing more research and funding for research. I hope that the minister will take on board the concerns that have been expressed on behalf of the people in the public gallery and the many others in our communities who suffer from ME. I look forward to hearing the minister's response.