Myalgic Encephalomyelitis

Part of the debate – in the Scottish Parliament at 5:16 pm on 23rd January 2002.

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Photo of Fergus Ewing Fergus Ewing Scottish National Party 5:16 pm, 23rd January 2002

I congratulate Alex Fergusson warmly on securing the debate. I imagine that it must have been a difficult speech for him to make. I am sure that we are all aware that ME has touched his family and that we wish Christopher well.

About a year ago, I received a letter from a constituent. I spoke to her today. She does not want her name or her daughter's name to be mentioned, but she said that I could call her daughter Georgina. Her letter read:

"I am writing to you to highlight the problems faced by people with ME, and to appeal to you to do all you can to further research and understanding in this area.

This is a poorly understood condition, which some Doctors still fail to acknowledge as real, and not "all in the mind". This illness can have a devastating effect on the sufferer and their family made worse by the prejudice and lack of understanding surrounding it.

It is time the Government did something about ME. It is real and does not go away if you ignore it. Many young people are affected with consequent waste of potential, and cost to the country in supporting someone with a long-term illness. These people, in addition, often face an extremely long wait, while waiting to hear about Disability Benefits, all the while being ill and in need of the financial help.

My eleven-year-old daughter"—

Georgina— "has suffered from ME for 4 years now. As a family we have found this extremely difficult. At the moment she is very disabled, being bed-bound most of the time, needing a wheelchair to get around, and a full time carer to help her at all times. She has had episodes of fever, suffers from chronic pain in her limbs, headaches, nausea, severe abdominal pain, sleep disturbance, severe exhaustion all the time, and now in addition "fit-like" episodes of severe muscle twitching. This is her third severe relapse. She was hospitalised in 1998 for 9 months with associated anorexia, and accompanying problems all associated with ME." In all the speeches that I have made in the chamber, I have never read out so much of a letter. I did so because I could not improve on the description that my constituent gave of the tragic plight of her and her daughter, who suffers the dreadful condition. As any other MSP would, I took up her case with the relevant authorities and received fairly sympathetic responses from Heather Sheerin of Highland Primary Care NHS Trust, who described the process of diagnosing the disease as a diagnosis of exclusion, and from the previous Minister for Health and Community Care. I am sure that all members subscribe to the proposals that Alex Fergusson described.

Since that letter was written, Georgina has spent four months in Yorkhill hospital and was in a coma—or shutdown, as some call it. Recently, she has come out of that and is making progress. I praise the neurological ward at Yorkhill, which has given my constituent and her daughter some succour.

I hope that the debate will lead to a slightly better understanding of this dreadful disease.