Myalgic Encephalomyelitis

Part of the debate – in the Scottish Parliament at 5:40 pm on 23rd January 2002.

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Photo of Christine Grahame Christine Grahame Scottish National Party 5:40 pm, 23rd January 2002

I say "Well done" to Alex Fergusson and John McAllion for their work on the cross-party group on ME. I cannot get to the group's meetings often enough because of other commitments.

I came to the group because I have a friend with ME. If one sees him in the good times, it is hard to believe that he was once in a wheelchair. I know that he must be going through a bad time now because his e-mails have stopped. He is very politically active. I get hordes of e-mails and then there is silence for months. I have discovered that, at the moment, he hardly has the energy to switch on a television or follow anything. The swings and roundabouts of this dreadful illness are what brought me to the cross-party group.

I asked him what I should talk about in this debate, and he mentioned the issue that was raised at the cross-party group meetings, which was benefits. People with ME find that benefits are a problem; for example, the disability living allowance form asks questions such as the number of steps that applicants can climb. The point is that although those people might have been able to do it yesterday, they cannot do it today and they do not know whether they will be able to do it tomorrow.

My friend has had the illness for decades and explained that he copes with it by managing it. However, if something goes wrong—for example, if he does something in a hurry—it might then take him two or three hours even to put his hand to his face in order to shave. Although the World Health Organisation has recognised this peculiar but real illness, I must stress that ME sufferers' huge difficulties with benefits have been severely neglected. People have to go through many appeals before any benefits might be granted.

Robin Harper mentioned young children, who face great difficulties with having their illness recognised. I must point out that there are problems with professionals in this respect.

Before I finish, I want to mention the written parliamentary questions on this subject that I asked when Susan Deacon was minister. In one question, I asked whether the Scottish Executive would

"undertake a national audit of the services which are available to those who have myalgic encephalomyelitis." —[Official Report, Written Answers, 22 May 2001; p 249.]

I was advised that I should wait for the report. Now that the report has been published, will the minister undertake an audit of the available services? Furthermore, will he answer the other questions that I lodged about involving professionals in understanding the illness to get rid of any prejudices and the idea that it is simply psychosomatic?