Q. Why do some people with CFS seem to improve whereas others do not? Have any specific factors been identified which can predict either a positive or negative effect on long-term outcome (prognosis)? Is this an area in which there ought to be a great deal more research being commissioned?

A. All three questions raise issues which have great practical importance for anyone claiming long-term sickness benefits or where disputes have arisen over the definition of 'permanent ill health' in relation to insurance claims and applications for ill health retirement pensions. Consequently, I will deal with these points in some detail and provide a number of medical references, which should prove useful for anyone who is in dispute with a bureaucrat.

To start with it's well worth pointing out that there is very little hard statistical evidence available from published research studies on factors affecting prognosis. I would fully agree that this is something which needs to be addressed, and the Association's Scientific and Medical Advisory Panel would certainly welcome any good quality proposals for possible funding. To follow this up I have recently had discussions with a number of doctors who have expressed an interest in co-operating with the setting up of such studies.

In very general terms, one of the best published studies on what seems to happen to people with CFS comes from Dr Gwyneth Hinds and her colleagues at the Royal Victoria Hospital in Belfast. Responses to a postal questionnaire from 291 consecutive patients (195 females and 96 males, whose ages ranged from 5 to 76) attending their clinic indicated that 23% were steadily improving; 12% were improving with occasional relapses; 42% had fairly constant symptoms which varied in severity ("good patches and bad patches"); 14% remained constantly (and sometimes quite severely) unwell and 5% were steadily deteriorating. These figures need to be viewed with a degree of caution because a specialised hospital referral clinic is likely to be seeing a higher proportion of patients who are not making progress than would be seen in the community by GPs. Unfortunately, we have no reliable data from primary care studies to show what happens to patients who are never referred to hospital.

As far as specific factors which may help to influence outcome are concerned, there are four areas which are probably relevant. Once again, reliable statistical data is rather thin on the ground and sometimes conflicting. Consequently, some of the comments below are based more on personal experiences and 'gut feelings' then established fact.

Demographic Factors: (e.g. age, sex, duration of illness) Hinds et al found that younger patients were more likely to recover, the recovery rates being 41%, 17% and 15% in the under 20, 20-39 and 40+ age groups. A more recent study by Charles Bombardier and Dedra Buchwald, looking at 445 consecutive patients attending a specialised hospital clinic in the USA, found that older age groups and a longer duration of the illness both predicted less chance of recovery. Although female sufferers outnumber males by a ratio of perhaps 2:1 there are no statistics comparing male:female recovery rates.

Clinical Features: On a purely personal level I have a feeling that people whose illness is triggered by vaccination, pesticide exposure or certain specific infections (e.g. meningitis, chickenpox) seem to have a less favourable outcome. I also know that other doctors would not agree with this opinion. There is, however, a general consensus that anyone with a severe sleep disturbance or co-existent clinical depression or anxiety state is far less likely to improve while these conditions remain unresolved/untreated. Alcohol intolerance has also been suggested as an adverse prognostic factor and I would certainly agree that as people improve their tolerance to small amounts of alcohol does seem to return in parallel. A rather more controversial conclusion concerns the way that some psychiatrists maintain that CFS patients who believe in a physical or viral cause for their illness are less likely to recover ( part of the logic being that everyone suffers from several viral infections each year ( but it is patently absurd to try and persuade someone that a virus was not involved when their particular illness was quite clearly triggered by some type of infective episode.

Social and Employment Factors: These can undoubtedly have a major influence on outcome, particularly termination of employment or where normal employment involves a combination of prolonged standing and mental activity (e.g. nursing or teaching professions). Lack of either practical support (e.g. home help for a mother with small children), emotional support (from family, friends or people at work) or financial support (e.g. hassle with benefit providers or employers) are all likely to produce a great deal of stress and have a negative effect on the chances of recovery.

Good and Bad Management Advice: This must be having an effect, especially during the crucial early stages of the illness. Unfortunately, we still have very little information from properly controlled clinical trials as to what constitutes good management practice. Excessive exercise regimes, weird diets and inappropriate use of certain drugs do NOT constitute good management.


To Conclude:

• The general outlook for people with CFS is extremely variable.
  
  
• Many patients do experience a degree of recovery, but not necessarily back to full health.
  
  
• Progressive deterioration is unusual and should always prompt a search for alternative medical explanations.
  
  
• There is a tendency for chronicity to occur which can be very prolonged.

Although a number of different factors all probably interact to affect the long-term outlook in individual cases, the most important indicators remain unclear. Even so, we do now know that this is NOT an illness which nearly always clears up within two years (as some doctors advising benefit/insurance/pension providers still maintain), and the figures for full recovery (back to normal health and a return to the usual form of employment) carried out at specialist centres (18% from Hinds et al; 13% from Sharpe et al; 6% from Wilson et al: 2% from Bombardier et al) provide powerful evidence for anyone who is now in the process of maintaining that their disability is sufficiently severe and chronic that it has reached a point in time where, for legal purposes, it is in all probability 'permanent'.


References:

Bombardier CH and Buchwald D. Outcome and prognosis of patients with chronic fatigue vs chronic fatigue syndrome. Archives of Internal Medicine, 1995, 155, 2105-2110.

Euba R et al. A comparison of the characteristics of chronic fatigue syndrome in primary and tertiary care. British Journal of Psychiatry, 1996, 168, 121-126.

Hinds GME and McCluskey DR. A retrospective study of the chronic fatigue syndrome. Proceedings of the Royal College of Physicians, Edinburgh, 1993. 23, 10-14.

Sharpe M et al. Follow up of patients presenting with fatigue to an infectious diseases clinic. British Medical Journal, 1992, 305, 147-152.

Wilson A et al. Longitudinal study of outcome of chronic fatigue syndrome. British Medical Journal, 1994, 308, 756-759.

Acknowledgment: reprinted from Perspectives, June 1996, magazine of the M.E. Association (UK), Stanhope House, High Street, Stanford le Hope, Essex, SS17 0HA.

Reprinted from Emerge, June 1997.