What is M.E.?
Myalgic encephalomyelitis (ME) is a disabling, often painful and little-understood disease of unknown origin and uncertain outcome. Its duration appears to be variable: some people seem to recover completely, or experience periods of remission and relapse; others develop a condition of unresolving physical and/or cognitive disability, while a further small but significant minority deteriorate to a housebound and ultimately immobilised state. Since case history research on ME is still in its infancy, and the disease is chronic, this last category may be considerably larger than has been supposed.What is the problem?
The World Health Organisation lists ME as a disease of the central nervous system, but recent research also highlights metabolic dysfunction in much of the body. It is currently thought that the disease may be triggered by one of several common viral infections and/or other environmental factors. The subject is bedevilled by confusing variations of terminology which help to mask the nature of the condition. ME is sometimes referred to as post viral fatigue syndrome (PVFS) or persistent virus disease (PVD), and also, in the USA, chronic fatigue and immune dysfunction syndrome (CFIDS). A recent move in the UK to discard the designation ME in favour of the blanket term chronic fatigue syndrome (CFS) is resisted by many researchers.Who is affected?
The disease appears to be on the increase, with probably more than 100,000 known cases in the UK. All groups are vulnerable, though ME may be more prevalent among women than men. The age-range most affected is 20 to 40, but many children have been diagnosed and their numbers may be increasing. The typical patient will have led an active life before contracting ME.
What is CHROME?
CHROME (Case History Research on Myalgic Encephalomyelitis) is a registered charity set up in 1994 to identify as many severely disabled ME sufferers as possible in the UK and to monitor the course of their illness over a period of ten years. The statistical data from this study will be analysed and used to supplement medical research in important ways.Why is CHROME needed?
A number of other bodies provide support and care for ME patients and foster medical research in this field. CHROME will not be duplicating their efforts. In concentrating on the most severe cases and undertaking a ten-year project of very precise scope, we are breaking new ground. Our detailed questionnaires will for the first time provide a precise picture of the disease as it affects this group.Until the inception of CHROME there was no way of collating standardised data, assembled on a regular long-term basis, on patients too ill to attend clinics. Our database, which continues to expand and is regularly updated, confirms that the viewpoint of patients has been marginalised. On the whole, patients' accounts of their own experiences have been resisted and systematic monitoring of those chronically affected has not been considered relevant. It is expected that the results of our study will be of real value to medical research, as well as countering unnecessary suffering caused by ignorance.
What kind of unnecessary suffering?
Patients with ME often complain that their own accounts of their condition, dismissively referred to as "yuppie 'flu", are not taken seriously. Many have been left to their own devices to cope with the consequences as best they can; they have often been blamed for not getting better. Similar misconceptions have contributed to the marginalisation of ME by government and health authorities, for whom research into the illness has had zero priority.These attitudes hinder medical progress and harm patients. But responses to questionnaires so far received show that many patients have suffered more than frustration or humiliation. They have endured actual physical damage as a result of treatment based on ignorance. Severe relapses have been brought about by medically recommended exercise, which may be beneficial in the treatment of some illnesses showing superficially similar symptoms but can be extremely dangerous to ME patients.
Treatment, advice and level of sympathy differ widely in medical circles. It is essential to promote a wider understanding of ME, and for this purpose the objective evidence obtained through the CHROME survey will be invaluable.
What has CHROME so far achieved?
In addition to the basic work on assembling and monitoring an ever-increasing number of applicants who meet the criteria of severe chronicity, CHROME has worked to develop links with the research community. We have participated in conferences, established a team of distinguished specialist advisors and contributed to academic journals. For example, at the time of writing, we are awaiting the publication of an article in the Journal for Chronic Fatigue Syndrome. We have already published in this journal an article on our cases of childhood onset. An important result of these activities has been to draw the existence of our sample of patients to the attention of researchers whose view of the illness has for various reasons tended to be rather short-term and fragmented.A full account of our earliest findings appears in our 1996 report, The Story from Below (still available from CHROME for £2.00, including p&p); free to CHROME participants on receipt of a self-addressed A4 envelope with a 38p stamp).
What can I do to support CHROME?
If you are housebound or bedbound, or know someone who is, please write to CHROME at:3 Britannia Road
London SW6 2HJ
or email secretary@chromesw6.co.uk a brief account of your condition, including your telephone number. You will be given a telephone assessment and then, if appropriate - and you agree, a copy of the CHROME questionnaire to complete.
Even if you have no personal involvement with this potentially devastating disorder, you may feel able to make a contribution to our work by sending a donation. For UK residents paying tax at the basic rate, the value of donations can be increased by 33.3% through covenanting or Gift Aid. Please send donations to, or ask for forms from the Treasurer at:
20 Ashfield Road
Davenport
Stockport
SK3 8UD
Contributions, by donation or legacy, will be acknowledged and will be greatly appreciated. CHROME's accounts are registered with the Charity Commissioners and copies can be obtained from the Treasurer.
