Clare McDermott
Research Co-ordinator
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The syndrome
Chronic Fatigue Syndrome (CFS) is a condition characterised by debilitating fatigue that affects both physical and mental ability to function.
In 1994, the US Centers for Disease Control produced diagnostic criteria for CFS.[i]These require severe, disabling fatigue lasting six or more consecutive months following a definite onset. All other recognised causes of fatigue must be excluded and the fatigue must be accompanied by at least four additional symptoms that may include:
· musculoskeletal pain
· tender lymph nodes
· sore throat
· intermittent fever or poor temperature control
· impairment in concentration or short term memory
The condition was the subject of a report in January 2002 to the Government Chief Medical Officer by an Independent Working Party which stated:
‘Chronic fatigue syndrome (CFS/ME) is a genuine illness and imposes a substantial burden on the health of the UK population’ [ii]
Nomenclature
In 1996, the Joint Report of The Royal Colleges recommended the term CFS for this condition.[iii] Nevertheless, many patients prefer the term ‘myalgic encephalomyelitis’ (ME).[iv] In the absence of a consensus, the 2002 Report to the Government Chief Medical Officer suggested the use of the composite term CFS/ME. 2
Effect of CFS/ME on daily living
CFS/ME affects people with wide range of severity. In 1998 Cox and Findley suggested assessing the impact of the condition on daily living using the following categories
- Mildly affected patients will be mobile and self-caring and able to manage light domestic and work tasks with difficulty.
- Moderately affected patients will have reduced mobility and be restricted in all activities of daily living. They will usually have stopped work and will require many rest periods.
- Severely affected patients will be able to carry out minimal daily tasks, that is, face washing and cleaning teeth, have severe cognitive difficulties such as retention of information, short term memory difficulties and word finding difficulties, and will be wheelchair dependent for mobility.
- Very severely affected patients will be unable to mobilise or carry out any daily task for themselves and be bedridden the majority of the time. [v]
Epidemiology
In the UK, estimates for the prevalence of CFS/ME range from 0.4% to 2.6%.[vi]CFS/ME is reported to be approximately twice as common in women as men, it affects all classes to a similar extent and affects all ethnic groups.2 The most common age of onset is the mid 20s to early 30s [vii] although children are also affected.
Aetiology
The 2002 Working Party to the Government Chief Medical Officer (CMO) conducted an extensive review of the clinical evidence including submissions from researchers, clinicians and patients. It stated;
‘The aetiology (cause) of CFS/ME is unclear, although several predisposing factors, disease triggers, and maintaining factors have been identified. The pathogenesis (disease process) underlying CFS/ME is also unclear. Research has demonstrated immune, endocrine, musculoskeletal, and neurological abnormalities, which could either be part of the primary disease process or secondary consequences’2
The abnormalities referred to by the CMO’s Report include:
· neuroendocrine changes [viii]
· immune abnormalities (eg reduced activity of natural killer cells) [ix]
· poor circulatory regulation (eg neurally mediated hypotension) [x]
· reduced cerebral blood flow [xi]
· changes in muscle chemistry [xii]
The multifactorial model
As the CMO’s report stated, research evidence suggests that predisposing factors, disease triggers and maintaining factors interact to produce the symptoms of CFS/ME. This concept is known as the ‘multifactorial model’ for CFS/ME.
Disease triggers may include:
· Viral infection, especially Epstein-Barr virus
· Exposure to chemicals such as organophosphates
· Trauma (either physical or emotional)
Predisposing factors may include:
· Stress
· Overtraining (among athletes and other sports people)
· Personality traits (eg perfectionism)
· Working prolonged or unsocial hours (either in employment or caring for dependants). In this case, the diagnosis of Chronic Fatigue Syndrome can only made if the fatigue persists for at least six months after the working hours are reduced.
· Familial susceptibility
Maintaining factors may include:
· Lack of guidance for patients on how to manage the illness, which can lead to either overactivity, underactivity or most commonly, a tendency to alternate between overactivity and underactivity – the so-called ‘boom and bust’ style of coping.
· Denial of illness by medical, social or employment services. This can make it more difficult for patients to implement effective CFS/ME management techniques
· Dysfunctional breathing patterns
· Physical deconditioning
· Catastrophic illness beliefs by patients, carers or health professionals (for example, believing that CFS/ME is untreatable and recovery is not possible)
· Patterns of attribution
The relative importance of different factors is likely to differ between patients and is likely to include other factors not listed.
The debate on the nature of CFS/ME has often become polarised (and sometimes heated) between those who feel that the condition should be seen as a medical disease whose pathology will one day be discovered and those who feel that the condition is primarily psychosocial in nature. Cooper (1997) refers to it as
‘the most contested syndrome of all’ [xiii]
In the context of this website, it seems reasonable to suggest that as the links between physical illness and psychological wellbeing are better understood, this debate may become less polarised, more sophisticated and possibly more helpful for both patients and clinicians.
Prognosis and Treatment
The prognosis for chronic fatigue syndrome when left untreated appears to be poor. For example, Vercoulen et al (1996) found that 80% of untreated patients with CFS/ME had made no improvement when followed up at 18 months.[xiv] However programmes aimed at educating patients to self manage their condition more effectively have shown encouraging results. Cognitive behavioural therapy and graded exercise have demonstrated significant treatment effects in randomised controlled trials.6 In Dorset, an evaluation of a lifestyle management programme found that 82% of patients improved after treatment with 42% returning to full or part time work or training after 18 months. [xv]
Local Services for CFS/ME patients
The Dorset CFS/ME Service was set up in 1998 as a pilot project co-funded by the Dorset Health Authority and the Dorset ME Support Group (a patient organisation). The service was designed by both clinicians and expert patients using principles of best evidence based medicine. Since 2000 it has been entirely NHS funded, one of few such in the UK. The service supports the multi-factorial model for CFS/ME. The treatment approach is led by Occupational Therapists and involves a lifestyle management programme based on restructuring rest and activity. Within the programme, patients and therapists explore issues including physical, environmental and emotional factors in recovering from CFS/ME.
Emotions, Chronic Illness and CFS/ME.
All chronic illness carries with it a burden of complex emotions.[xvi] In that respect, CFS/ME is no different. Many patients have an acute onset to their CFS/ME. They move suddenly from a situation of good health and full activity to a situation of pain, exhaustion and inability. Previous activities which gave identity and meaning to life are no longer possible. The prognosis is uncertain and patients do not know how long their illness will last. They don’t even know if they will recover. In common with other chronic illness, feelings of frustration, isolation, loss of self esteem and even despair are part of the unwelcome package of emotions that have to be coped with.[xvii]
In CFS/ME, the controversy over the nature of the illness can raise particular problems. It is difficult for both doctors and patients to deal with an illness where all tests and investigations give negative results.13 Patients often feel that they are battling against disbelief to communicate that they are exhausted or in pain and that that they are genuinely unable to carry out activities they were previously able to do without difficulty.[xviii]The role of the doctor can become very perplexing in a situation which lacks the clarity of a clear diagnosis supported by abnormal test results. Doctors may fear that they are colluding with the patient if they accept that the patient is really ill. Yet where acceptance is withheld, patients can, and usually do, feel blamed for becoming ill. [xix]
Many patients report feeling isolated and stigmatised – as much by being unable to explain to others why they are ill, as from the restrictions imposed by the illness itself. [xx]
Emotional Processing and CFS
Where the experience of an individual is not validated, this can leave a difficult vacuum where full expression of anger or loss or fear does not feel permissible. Powerful and painful feelings are not acknowledged as reasonable responses to the situation and are therefore not processed.
When I am following up patients who have attended lifestyle management groups at the Dorset CFS/ME Service, I often ask patients who have improved what they feel contributed to their improvement. Many have commented on the value of being able to acknowledge feelings such as loss and anger at becoming ill and feel that their feelings were validated within the group. This simple validation does seem, for some patients, to have a profoundly therapeutic effect.
The mental fatigue associated with CFS/ME may also make effective emotional processing more difficult. Patients commonly report that mental fatigue (often described as ‘brain fog’) [xxi] reduces their ability to analyse feelings and to connect emotions with events in a coherent pattern. Many patients report increased emotional lability. [xxii] As yet, we do not understand the mechanism for either of these effects.
The issue of emotional processing and CFS has received minimal research attention to date. A number of qualitative studies have explored the experience of patients with CFS/ME. [xxiii] [xxiv] [xxv] All have noted the complex range of painful emotions generated by the illness experience but none has specifically explored the processing of these emotions as an issue.
A personal viewpoint
The issue of emotions and CFS/ME is a sensitive topic. I have been the research coordinator for the Dorset CFS/ME Service for the last four years. The issues in this article I have discussed with NHS colleagues, patients attending the Dorset CFS/ME Service and friends who have had CFS/ME in the past, or who are living with it now. Nevertheless, I first learnt about emotional processing and CFS/ME first hand, by having the illness myself. Whilst good research requires the discipline of academic rigor and objectivity, emotional processing is a subject on which we all have personal experiences to offer. Therefore I am taking the risk of ‘getting real’ and offering a few of mine.
I became ill with CFS/ME at the age of 13 following encephalitis. Despite rigorous physiotherapy I became increasingly disabled. For about 10 years I was in bed most of the time and for about 8 years I needed a wheelchair to get around when up. For the 3 worst years I was confined to one room. I spent the years watching the chestnut tree out of the window turn from spring buds to dusty summer green and to autumn gold. Every spring I believed that I would soon be able to walk across the lawn and touch the tree with my own hands. I was aged 21 on the May morning when I achieved it. It was a fantastic feeling – far, far better than winning a gold medal at the Olympics.
For many years I needed help in washing, dressing, sometimes feeding. My hands and arms were too painful to write legibly, or hold a cup of tea safely. I had cognitive difficulties – I learned to communicate with minimal words because of the difficulty of constructing sentences. I learned to keep occupied with the radio or my own thoughts because I struggled to read the printed word and TV pictures flickered past too fast to follow.
Since then I have met a number of individuals who have experienced or are still coping with that level of disability from CFS/ME. It is estimated that 25% of CFS/ME patients are severely or very severely affected. 2 I am not that unusual.
But I am fortunate. After seven years of illness I started the long journey back from incapacity with the help of professionals who were sensitive, imaginative and creative. They understood that supporting patients in recovery from chronic illness is not only medical and practical, it is also about supporting patients in working though or ‘processing’ emotions.
In the early days of being ill, acknowledging emotions often seemed to be discouraged. When I first became ill no-one could find any reason why I had lost my ability to walk, to run, to dance. I couldn’t dance any more yet none of the tests showed anything physically wrong. Honestly well intentioned professionals explained that since I ought to be able to dance I didn’t have anything to grieve for and therefore I should not be allowed to cry. Perfectly logical in their minds, but to leave a vacuum where grief has no validity is not an encouragement to effective emotional processing. Being a ‘good’ patient seemed to be defined as always appearing cheerful, never crying and never getting angry. As an adult I realise that health professionals are not necessarily any more comfortable with strong emotions than their patients. We are all human.
The turning point in recovery was seven years later when I received a more holistic form of intervention which included both addressing medical and practical issues, and looking at emotions. Exploring emotions and their effect was a long journey, the early stages of which seemed difficult and sometimes threatening. Opening up to emotions long suppressed can seem like the mythical Pandora’s Box. At first I did not feel very trusting, even hostile at times, but with warmth and acceptance many difficult things gradually became possible.
For me finding a way out of the jungle of illness involved exploring and ‘mapping out’ a mental picture of where energy comes from and where it gets lost. I did not know the term ‘emotional processing’ at the time when I was rehabilitating. Emotional processing still sounds a clean tidy word for what often seems a difficult and messy process. Yet when I first saw the emotional processing schema developed by Roger Baker, it fitted and clarified part of my experience. Either consciously churning over emotions without resolution or blocking them from conscious thought can use up considerable energy.
I found it enormously helpful that those working with me avoided simplistic interpretations. If processing painful emotions helps recovery, it does not necessarily mean that the symptoms involved are any less physical, nor less real. Whilst emotional processing was a useful part of rehabilitation, taking proper rest periods and getting an electric wheelchair to increase my independence in the early stages were equally crucial.
A key factor in my recovery was the realisation that it is possible to learn to distinguish and utilise positive energy resources. Some activities seem to drain energy. Others seem to enhance it. That is just as true whether you have CFS/ME or not but in an illness where energy is in short supply, gradually redirecting one’s life towards energy enhancing activities and relationships can produce an upward spiral of improving quality of life and health.
Of the individuals I know who have made the most substantial improvements from CFS/ME, most have redirected the course of their intended life patterns. This is not a scientifically rigorous observation and there are a variety of possible interpretations, but it is an interesting issue.
There is one word of caution. I sometimes meet individual patients who appear to be doing everything right – very healthy attitudes to emotion, excellent lifestyle management including regular exercise, inspiring plans for the future- yet they are still not recovering. Those of us who have been lucky enough to recover are in no position to be too simplistic. We still know very little about the physiological processes operating within the illness.
In summary, my ‘energy map’ included
- Working through, accepting and expressing emotions (ie emotional processing)
- Trying to create a balanced lifestyle of rest and activity in physical, mental and emotional spheres
- Identifying which activities are most energising and directing the future towards them
Although I still have some way to go in regaining the level of stamina I had before CFS/ME, I can do things that I could only dream about when I was 20, especially earning my own living, studying for an MSc and having a normal social life. Little things are an extraordinary pleasure, like making a cup of tea for myself, driving to work or walking in the Purbecks.
In 1994, the British Medical Journal published an article by Dr Clare Fleming about her experience of developing severe CFS/ME after contracting glandular fever as a busy GP [xxvi]. For a number of years she was bedridden or in a wheelchair.
It took Dr Fleming six years to recover back to full health. She became an active member of the National Task Force on CFS/ME. Her original article was titled ‘The Glass Cage’, referring to the frustration of being trapped by an illness which was invisible to others. In 2000, she published a sequel entitled ‘Beyond the Glass Cage’ in which she described her recovery. Dr Fleming’s conclusion expresses the power of accepting and understanding feelings within chronic illness. She writes:
‘One of the most powerful things ME taught me is that I can choose to change. I needn’t fear my weaknesses or my feelings: they are windows onto a garden of opportunity, beckoning me toward a wholeness that goes beyond my physical recovery’ [xxvii]