The Management of Chronic Fatigue Syndrome
This is a summary of the talk given to our Society at the meeting on May 6th, 1995. The speaker was Dr Michael Oldmeadow, FRACP, who is a consultant general physician with an interest in infectious diseases, and a senior lecturer in medicine at Monash University.

Background
Dr Oldmeadow first developed an interest in Chronic Fatigue Syndrome (CFS) about eight years ago when he returned to Australia after working in the Pacific region for several years. Based at Fairfield Infectious Diseases Hospital in Melbourne, he noticed an increasing number of patients were presenting with the symptoms that are now identified with CFS. Because Fairfield Hospital had a reputation in Victoria as a centre dealing with chronic viral infections, many general practitioners (GPs) would refer patients who remained ill after a viral infection to doctors at Fairfield.
Recognition of CFS
Dr Oldmeadow stated that CFS is an extremely difficult illness to manage. He said that people with CFS have not been listened to by GPs, and this is not surprising since upwards of 30% of people who attend GPs complain of tiredness, while only a small proportion of these have CFS. Given the fact that there is no discussion of CFS during doctors' years of training, it is then very difficult for medical practitioners to distinguish CFS from other forms of fatigue. Even now it is not easy to get CFS into the curriculum for medical students. Doctors have to learn about CFS 'on the run'.
The first major 'invasion' of CFS into the medical literature was the case definition published in 1988 in the Annals of Internal Medicine under the auspices of the Centers for Disease Control (CDC) in the USA. This was an important document because it represented the first serious attempt to provide diagnostic criteria for the illness.
There have been several further attempts to define CFS since then, with the latest being a revision of the original CDC case definition (Ed: see Emerge, March 1995, p27). On the local scene, another significant event occurred in 1993. A document on CFS appeared in the Common Sense Pathology series, which is produced by a ministerial working party called the Pathology Education Committee. The article (by Drs Wakefield, Lloyd and Hickie) was introduced by Dr Jim Lawrence, head of the Royal Australasian College of Physicians. Dr Oldmeadow said that Dr Lawrence, who is an influential and conservative physician, would never have put his name to anything he did not consider legitimate.
Depression
A discussion of the management of CFS cannot ignore depression, because it does occur in the illness. However, Dr Oldmeadow said that CFS is not the same as depression, and the view that was held a few years ago by some doctors that CFS is a form of depression is no longer tenable. Depression occurs as a complicating illness in the presence of other medical illnesses such as heart attack, multiple sclerosis and rheumatoid arthritis. It is an entity which can also intrude into CFS. Dr Oldmeadow pointed out that whenever the central nervous system (CNS) is affected by an illness, higher rates of depression occur than in illnesses which do not affect the CNS. Examples of conditions which do affect the CNS are Parkinsonís disease, epilepsy and multiple sclerosis, and in these diseases depression may represent an associated entity and not simply a reaction to the original illness.
In CFS, the fatigue appears to have its origins in the CNS, raising the possibility that depression in CFS may - in part at least - be a consequence of the disease process and not just a psychological reaction to the disease.
Dr Oldmeadow explained that depression can be separated into different levels, eg. major depression; minor depression; adjustment disorder (ie. lowered mood as a psychological reaction to illness); organic mood syndrome; and uncomplicated bereavement. The differences between CFS and depression were highlighted for Dr Oldmeadow by Melinda Wood's verse in Emerge in September 1992 (Ed: reprinted in 'Members Contributions' in this Emerge). In her verse, Melinda acknowledged the difficulties of living with CFS but finished on an optimistic note. A sense of optimism is uncharacteristic of depression.
Diagnosis and Cause of CFS
It was emphasised by Dr Oldmeadow that the diagnosis of CFS is not made on the basis serological or immunological tests. T-cell and glandular fever tests are not diagnostic for the illness; in fact, these tests won't tell you anything specific about CFS. In distinguishing CFS from other conditions, narcolepsy should be considered. This is a treatable disorder characterised by recurrent irresistible daytime sleepiness. Dr Oldmeadow stated in some cases of chronic fatigue, narcolepsy may perhaps be a bit more important than previously thought. Sleep apnoea (which causes extreme daytime somnolence) is another possible cause of fatigue. Sleep disorders have been documented in CFS, although their significance is not well understood.
Dr Oldmeadow considers that the closest current interpretation of the pathogenesis of CFS is of inappropriate activation of the immune system, with the possibility that immune system chemicals known as cytokines are involved in causing symptoms of the illness. He explained that when you get a virus, the virus and immune system antibodies do not make you feel sick, but that cytokines do. These chemicals can cause exhaustion, poor concentration, disturbed sleep and altered mood. When people with Hepatitis B are treated with cytokines, they develop similar symptoms to people with CFS.
'Suppressor' T-cells act as an off-switch to reduce the production of cytokines. Perhaps in CFS the off-switch is not working. Dr Oldmeadow noted that this is a theory which has not yet been proven, and that studies are underway to assess the role of cytokines in the illness.
Management
In any chronic (ie. long-term) illness, the immune system can be affected by stress. This can lead to a vicious cycle where stress can exacerbate the illness, and can therefore become a significant factor in the management of the illness.
It is important that the following issues are addressed in the management of CFS:
- sleep
- pain
- psychological morbidity
- lifestyle management
- support, both medical and social.
From a doctorís point of view, specific actions that should be undertaken are:
- active listening during history taking. Alternative medicine practitioners often perform this aspect well.
- helping the patient to identify and reduce relevant stress factors. Tolerance of stress is often reduced in people with CFS.
- emphasising the importance of maintaining a balance between overactivity and inactivity
- advising on a graduated exercise program. Exercise must start at a level that can be coped with, eg. walking. This must be increased very gradually, not quickly. The focus should be on heart-lung exercise, not muscle exercise.
- setting realistic goals
- providing information on counselling and support groups
- psychiatric referral as indicated. This is important if there is a treatable psychiatric illness.
- periodic diagnostic appraisal
Chronic symptoms such as musculoskeletal pain and fatigue cause frustration for both patients and doctors. People with CFS can lose faith in health professionals and experience confusion and loss of control over their lives, leading to cycles of hope and despair. Individuals can spend thousands of dollars searching for 'answers'. Grieving occurs with CFS, and Dr Oldmeadow feels that it is usually in the 'bargaining' phase of grief that people spend large sums of money in search of a 'magic cure'. It is desirable to reach a stage of acceptance of the illness, which is different from an attitude of resignation.
Insomnia needs to be dealt with, and there are many possible causes. Secondary problems of anxiety and stress can result when insomnia occurs. Dr Oldmeadow provided a brief article on sleep hygiene which may be helpful for some people (Ed: reprinted in this Emerge).
Drugs
Conventional drugs used in the treatment of CFS include:
- low dose tricyclic drugs, especially for sleep disorder
- antidepressants, both new and old
- anxiolytics
- anti-inflammatories
- limb-movement modulators: clonazepam, L-dopa, carbamazepine.
The subject of alternative therapies is a difficult area to address. Because most alternative therapies for CFS have not been scientifically evaluated, when someone claims to have received benefit from such a treatment, it is difficult to distinguish between genuine benefit, the placebo effect, and natural remission (which does occur in CFS). The placebo effect is when people get a temporary 'lift' from undergoing treatment, regardless of the effectiveness of the treatment. Dr Oldmeadow thinks that because the medical profession has not managed CFS adequately, the door has been left too wide open for alternative therapies.
Natural History
Dr Oldmeadow has observed that many people with CFS were extremely active before developing the illness. He noted that the general feeling now amongst coaches of athletes is that care should be taken with athletes when they have a virus, in case longer term problems such as CFS develop. Some vaccines appear to have the potential to trigger CFS, although it is possible that the next virus encountered may do the same 'triggering'. The role of pesticides in CFS is unknown. On the issue of recovery, Dr Oldmeadow stated that most people improve over time, but the process is slow.
Reprinted from Emerge, June 1995.
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