Meeting with MESH
Report of the Open Meeting with MESH, the Edinburgh ME Self-Help Group 2003. MESH news 44 (Summer 2003).
The ME Research UK team
The guest speakers at the Open Meeting were three of the key people in ME Research UK, the ME Research Group for Education and Support — Dr Vance Spence, Dr Neil Abbot and Mr Billy Dockery.
The meeting opened with an explanation of the background to the founding of MERGE (now ME Research UK) three years ago. Although there are several major ME charities in the UK, none were doing biomedical research into the disease, a very obvious gap that had to be filled. The focus is on ‘classic Myalgic Encephalomyelitis’, avoiding the difficulties caused by the vague definition of ‘chronic fatigue syndrome’, and the approach is to use rigorous, scientific methods which yield meaningful results. Based in Perth, ME Research UK collaborates extensively with Ninewells Hospital in nearby Dundee, where the biomedical centre is second only to Cambridge in the UK. Collaborations with Edinburgh and Aberdeen Universities are being explored.
ME Research UK has also been very active on the ‘political’ front; producing a thorough and well-received response to the English CMO’s report on CFS/ME, participating in the Scottish Short-Life Working Party, and producing a significant document to assist its work which included the design for a realistic ‘care pathway’.
Drs Spence and Abbot attended the Washington conference on CFS, and their report is available here. It is estimated that at least a million people in the United States suffer from ME/CFS, and the burden of the disease to the sufferer is as great as almost any other medical condition. Yet there is comparatively little research or funding to deal with it. The only way forward seems to be for charities to raise money to sponsor research, and this is a major part of ME Research UK’s work.
It has set up the Friends of ME Research UK scheme to generate income which can be used to sponsor small-scale research, and once this is published it should become easier to attract more significant funding. This is ME Research UK’s major challenge for the coming year.
Billy Dockery is ME Research UK’s (part-time) Development Officer for Support Services, and he followed on from the introductory talk by suggesting ways in which MESH could press for better services from Local Authorities and Health Boards. Billy worked in Local Authority social work and knows its problems and achievements intimately. Its constant challenge is to do as much as it can with very scarce resources, and we need to get ourselves noticed where the funding decisions are made, or we will be ignored. ME Research UK is maintaining a computerised database of social care information about contacts to make it easier to get in touch with the people who can help us. ME Research UK has written to every Local Authority in the UK and Eire to ask what care they provide to ME. This information is available here.
While recognising the value of MESH’s work as a support group, Billy emphasised that it must also act as a pressure group if it is to maintain the momentum generated over the last year or so, following the CMO report and the Short-Life Working Party report to every Scottish Health Board. Unfortunately, most health authorities are probably too busy even to have read the report, and although its publication is useful, support groups such as MESH have to tackle three questions:
- How will we get ME onto the health authority and social work agendas?
- How will we keep ME on these agendas?
- How will we keep in control of, or at least in touch with, service developments?
Major changes are going on in relevant organisations at the moment, as they try and move towards more ‘joined-up working’, but there is still a danger that they will try and give us little more than tea and sympathy. We must not accept this: ME sufferers are worth — and entitled to — much more than the minimal care we’re currently receiving. To exploit the current opportunity, MESH will have to register with the local Health Council in order to be involved and consulted. ME Research UK can help us by providing the relevant contact information, and while it still won’t be easy for us to exploit our great opportunity to get better help and services, ME groups in Dumfries and Fife are already making progress.
Vance Spence rounded off the meeting by talking about research, currently made so difficult because scientists are confusing information (of which there is too much) with new ideas (of which there are far too few). Happily, ME Research UK has plenty of good ideas to follow up, as Dr Spence showed when he described his latest research, in which he compared groups of patients having ME, organophosphate poisoning, or Gulf War Syndrome (also described here). All the patients were first examined by a consultant for symptoms (what the patients said was wrong with them) and signs (problems that doctors can detect), and at that stage there was nothing to tell them apart: all suffered from chronic exhaustion, and might all have had the same illness. The research was investigating the lining of the blood vessels: arteries are lined with endothelial cells which can contract or relax the artery to raise or lower blood pressure, and their operation is affected by a chemical called acetylcholine, which is important in several of the body’s processes — muscles, the nervous system, and the immune system, as well as blood vessels. In the ME Research UK experiment, the three groups of patients received iontophoresis of acetylcholine, and their blood flow was measured. The results showed that the blood vessels in the ME sufferers took much longer to return to normal than either in healthy people or in the other two groups of patients. This is a critically important result, demonstrating that there is a real physical process which isn't working properly in ME patients, and it is much to be hoped that this will act as a stimulus for more intensive and wide-ranging investigations.
The meeting closed with a question and answer session which demonstrated the excitement felt by everyone at the prospects for better research and more interesting results in future. Vance Spence is a remarkable man, in being able to drive this research forward through the charity he himself set up, even though he has suffered from ME for over twenty years. ME Research UK is clearly ‘the best show in town’, and the MESH committee is unanimous in deciding to support its work as much as possible.
The full report appears in the MESH Newsletter 44, Summer 2003.
