Myalgic Encephalomyelitis

Part of the debate – in the Scottish Parliament at 5:51 pm on 23rd January 2002.

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Photo of Hugh Henry Hugh Henry Labour 5:51 pm, 23rd January 2002

I will return to research later.

The debate gives us an opportunity to state clearly that some of the myths, scepticism and prejudice that have existed should be consigned to the past. Alex Fergusson, Christine Grahame and others have spoken about sufferers whom they know. I, too, have a close relative who has suffered. One point that has been echoed tonight is that a sufferer can go from being active—and almost, in my relative's case, from having to be chained down to stop them going to work when they were not well—to being suddenly physically incapable of going out of the house, not understanding what is wrong with them and not being able to turn to anybody who can give them assistance and advice. We must consider that.

Another welcome feature of the report is its emphasis on the need for evidence-based practice. Because so much remains unknown or uncertain about the condition, it is easy to assume that there has been little research. That is not true: there have been more than 1,000 medical research publications. As we speak, nearly 30 research studies are being carried out in the health service. As is often the case, the quality of the published research varies widely and care is needed in its interpretation.

Susan Deacon and others made some useful suggestions. She spoke about the need for action now that the report is published and about a mechanism to take the report forward. John McAllion spoke about identifying how we support the needs of ME sufferers. We will respond to those requests by setting up a short-life action group to consider over three months the most effective ways of improving the care and quality of life for those with ME.

The information from that group will be made available to the NHS at all levels in Scotland. Speakers tonight have been right: we need to ensure that doctors and everyone else who is involved in the NHS are aware of the findings of the report and, more important, of some of the things that could and should be done to support ME sufferers.

The report's findings form a good platform on which to base our future research effort. We need to identify interventions that can be incorporated into routine clinical practice and to find out which therapies work best for which groups of patients. A number of speakers have mentioned the need for more research. Janis Hughes, Margaret Smith, Lord James Douglas-Hamilton, Nicola Sturgeon and Bristow Muldoon all correctly emphasised that need. However, research cannot be a substitute for action; we need to consider that.

The working group acknowledged in the report the lack of good evidence on incidence, prevalence and trends and recommended further research. The Department of Health in England has asked the Medical Research Council to draw up a research strategy, taking account of the working group's findings, other recent expert reviews and the views of patients and carers. The work will be advanced by an independent scientific advisory group. It is appropriate to state that the MRC is a United Kingdom body. It funds research projects throughout the UK and has frequent contact with our chief scientist office. We support the initiative to establish such a strategy and will provide whatever help we can. Until that strategy is available, it would not be sensible for the Executive to commission large-scale studies. There are also disputes about definitions.

Once the MRC's work is complete and the future strategic direction of research is clear, we shall of course be seeking to play our full part in the implementation of the strategy. We are not convinced at present of the arguments for a centre of excellence, but we need to consider some of the further research. Good-quality research proposals into other aspects of the syndrome will be considered by the chief scientist office through the usual peer review process.

Those who suffer from ME are a well-organised group of people, who have right and justice on their side. The fact that so many people are now suffering makes it imperative for us to respond appropriately. We must take people who suffer from ME out of the shadows of being regarded as cranks, malingerers and people who are trying to avoid facing up to reality. ME is a specific medical problem and, as members have said, we need to change attitudes and culture. We must ensure that local authorities, health services and others have the information that they need to provide a proper service to people who suffer from ME.