This essay will be reviewed regularly and updated as new information comes to hand. The piece offers a consumer perspective based on consumer experience. We hope it will benefit the patient community and give some introductory insight to medical practitioners, but it is not intended to be a comprehensive guide. We recommend the Canadian Clinical Guidelines[1] and Dr Stein’s Guide for Psychiatrists[2] as a starting point for medical practitioners.
ME/CFS and Psychology
We discuss the role of psychology in ME/CFS and acknowledge the important role that psychologists and psychiatrists can play in assisting some people cope with ME/CFS. We ask for clarity concerning the role of psychology and ask health practitioners to begin to take into consideration the iatrogenic harm[3] that comes from a healthcare system which has not always dealt well with this ‘emergent’ condition. Public health officials, psychologists, psychiatrists and consumer groups can work together to provide a ME/CFS narrative that brings healing to patients.
Any chronic health condition assaults the psychology of the patient, and ME/CFS is no exception. ME/CFS can be as disabling as MS, AIDS, and cancer-related chemotherapy. People who have led otherwise active lives, are confronted with new limitations and they need to adjust to them. There are also symptoms which are part of ME/CFS which are psychologically distressing and any person with ME/CFS must develop coping strategies to deal with them. As with any chronic condition, social isolation can be profound for the person with ME/CFS. Taken in totality, we can understand the shock to a person who develops ME/CFS. Different people will have different coping mechanisms, and so will require different treatment responses. Before discussing specific therapies and their applicability we will make some general comments on psychology and ME/CFS.
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It is not clear whether psychological factors are a risk in developing ME/CFS. It was thought at one stage that ME/CFS was an ‘over-achievers’ disease. As a stereotype that view has been discredited—ME/CFS affects both ‘A’ and ‘B’ type personalities. That said there is some evidence to suggest that prior to onset, some ME/CFS patients experienced prolonged psychological or physical stress. (We know that either of these will weaken the immune system.) It is possible that there is some correlation between psychological factors and a probability of developing ME/CFS in a subset of patients. However, this may be a second-order association where a weakened immune system is the first-order risk factor.
The Australian ‘Dubbo Infectious Outcomes Study’[4] tracked the course of people’s health following infection. This study showed that the only significant risk factor for the development of CFS was the severity of the acute infective illness. Psychological variables were not a predictor of which patients were diagnosed with CFS after six months and which patients recovered.
We hypothesise that ‘A-Type’ personalities may find it harder to reduce their activity levels due to their driven nature. This may make it more difficult for them to manage their condition as they are likely to attempt to do too much when they feel well, resulting in boom and bust activity cycles.
The role of psychology in the pathophysiology of ME/CFS is still being contested. Given that the pathophysiology is not yet proven, we can only postulate based on the balance of probabilities. The majority of ME/CFS patients have a sudden-onset. ME/CFS symptoms are present immediately in many cases, although not necessarily at their worst. The existence of even a significant minority of sudden-onset patients with ’normal’ psychology is all that is required to prove that ME/CFS can be present independently of psychological ‘dysfunction’. Given this is the case, we have a logical basis for insisting that some distinction must be made between the underlying pathophysiology of ME/CFS and the psychological response/adaption that follows post-onset. This is not to deny that the two will interact in the long-term ill and the distinction may become blurred. (Without maintaining a distinction, biopscyhosocial models of the condition become nonsensical).
The key discussion point concerning psychology and ME/CFS is whether psychology affects recovery. Some have postulated that ‘CFS’ is maintained by the patient’s psychological (and consequent behavioural) response to illness. ME/CFS Australia does not believe that the majority of ME/CFS patients learn ‘helplessness’, develop ‘avoidance behaviours’ or adopt a ‘sick role’—no more or less than any other condition. Such notions as generalisations are insulting to the many people with ME/CFS who want nothing more than to be healthy and continue to contribute to society.
With our current knowledge at such poor levels, we must attribute recovery to both good management and ‘luck’. Some people’s bodies are able to resolve the condition—we don’t know how—while others, despite their best efforts, are not so fortunate.
While it is frustrating for both patients and their clinicians when patients do not make progress, patients should not be blamed for not getting better. It has often been the case throughout medical history, that when a condition is poorly understood, some medical professionals turn on the patients and label them with a psychiatric diagnosis. This is a low form of bigotry that has devastating consequences. Even if the clinician feels that some patients are contributing to their disability, it is not grounds for stigmatising the entire patient group.
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Psychological Assistance for People with ME/CFS
As with any chronic condition, people with ME/CFS may benefit from supportive counseling. Patients must learn to adjust their lives to work within new boundaries. There is grief associated with loss of a ‘former life’ and also emotional distress if family members, work colleagues and friends doubt the reality of their condition.
The level of supportive counseling required will depend on several factors including the severity of the condition, the life circumstances of the individual and the individual’s personal ability to cope with change. The family GP can often provide sufficient supportive counseling, particularly when the patient is well equipped to deal with their altered circumstances. Where the patient is under severe distress, referral to a psychologist or psychiatrist should be considered.
Many with ME/CFS experience altered mood as part of the condition. Mood disturbance is common when peoples’ symptoms worsen, especially during relapse. Both the biological disturbances in the endocrine and immune systems of people with CFS (including altered cytokine activity), as well as the obvious emotional reactions to the devastation of the illness, explain altered mood states. These factors also increase the risk of developing a concurrent depressive illness. We note that the mood disturbances in ME/CFS are distinct from the patterns seen in depression, although they do have some commonality. Severe mood disturbance should be treated by a psychiatrist.
We recommended that patients are referred to clinicians that are familiar with the onset, diagnosis, and treatment of people with ME/CFS. Patients should not feel that referral to a psychologist is an admission that their condition is psychological in nature. Clinicians should recognise that it is difficult for the patient to make this step, particularly if they have had to fight for the legitimacy of their situation in the face of derision from family members and friends. We cannot stress enough that the stigma of having ME/CFS can be as damaging as the physical symptoms.
Referral of patients to support groups can be beneficial. Official support groups in Australia encourage patients to take responsibility for their health and attitudes. Patients are encouraged to actively manage their condition and self-management courses are provided to assist patients in this regard.
Patients who wish to cope better with their ME/CFS may wish to be referred to a psychologist or psychiatrist. A tailored program can be beneficial. It is a sign of strength to seek assistance of this nature and patients need to feel safe in doing this.
Psychologists and psychiatrists use a therapy called Cognitive Behaviour Therapy (CBT) which is a means for patients to understand their thought processes, emotional responses to disease and the coping behaviours they develop, both good and bad. There has been some debate concerning CBT which needs to be addressed.
CBT
Many patients reject CBT as being unnecessary and possibly harmful. On the other hand, a small subset of patients do report benefits from CBT. This is substantiated by research data which showed improvement in 40% of patients as opposed to 26% in normal clinical care[5]. There are two confounding issues here. First, CFS is a broad diagnosis so it’s hard to pinpoint the specific subsets that will benefit from any particular therapy. Second, different people mean different things by CBT, both patients and practitioners, and the attitude behind it is also critical.
Some see CBT as a tool whereby the patient is coached to understand their responses to their illness, both psychological and emotional. Patients can be taught to develop greater mental strength and improve their coping and self-management skills. It is an adjunct therapy, not a treatment for ME/CFS.
The second view of CBT is predicated on the hypothesis that people with ME/CFS develop maladaptive responses to their illness, taking on a ‘sick role’ and developing an unhealthy fear of activity. CBT is required to reprogram negative thinking patterns which will ultimately lead to changed behaviour. Much of the behavioral research literature is imbibed with this underlying hypothesis.
For most patients the assumptions of the second view do no hold. As with any chronic condition, it is likely that some patients develop maladaptive responses to chronic illness. But this is going to be true of all chronic disease. We do not believe that the majority of ME/CFS do develop inappropriate coping mechanism. Unfortunately many who recommend CBT have left their commendations very general, tarring the entire ME/CFS patient community as being dysfunctional people who psychologically maintain a physical condition. Commonsense should prevail.
Where the patient clearly demonstrates ‘normal’ psychological responses given their health and wider circumstances, referral to a psychologist is probably not necessary—certainly not a frontline management approach. Insisting on CBT and psychiatric interventions for intelligent, motivated people with a ‘normal’ psychological profile is insulting and potentially damaging to them, both socially and psychologically. This is perhaps why some patients have reported that CBT has made them worse.
While it could be argued that CBT administered by a sensitive practitioner can do no harm, it is potentially a waste of resources and taxpayers money. Even if it does some good, the cost-benefit ratio for the moderate to severely ill patients must be considered. The marginal benefit may not be worth the cost (effort) of participating in the ‘treatment’ and there is an opportunity cost of not pursuing other avenues.
Comment on the Research Evidence
As you would expect with any ‘emerging’ condition, there are differences in opinion as to its cause and nature. The research literature contains a wide variety of hypotheses. There is a behavioural school of ME/CFS research which hypothesises that psychology has a major role in the maintenance of ME/CFS. In fact the research literature has been flooded with studies in this field.
CBT has been moderately successful in providing some benefit to patients who have been selected either under a chronic fatigue or the broad Fukuda research definition of CFS. These patients have typically been well enough to attend a tertiary care facility. As such they do not represent the entire ME/CFS population and the generalising of these results is not appropriate. Many CFS patients report harm from CBT but the specific reasons for this have not been studied.
It is the opinion of ME/CFS Australia, that people with chronic fatigue are more likely to respond to behavioural research as this broader and much larger group (at least three times[6] larger) is more likely to include people with mental and emotional disturbance. Such people are likely to benefit from individual coaching from a specialist.
The fact that behavioural research has shown some moderate benefits does not prove some of the underlying hypotheses of the behavioural researchers. E.g. that dysfunctional behaviours are present and delaying recovery. It may be just that people are leaning better self-management techniques (which is a good thing) or that some just get better over time in the natural course of the condition.
We would hope that the medical community makes it a priority to outline the criteria which clinicians can use to assess whether CFS patients may or may not benefit from CBT.
Factors to Consider Concerning Psychological Therapy
Recommendations for psychological assistance should take into account factors such as type of onset, patient history, length of illness, time until diagnosis, past treatment by the medical profession and the individual characteristics of the patient. It is up for the medical profession to determine specific recommendations, but we think it reasonable that patients in the first stages of ME/CFS are given supportive counseling and opportunities to attend self-management courses rather than be sent straight to a psychologist.
We do not believe that general recommendations for psychological therapy are helpful. Generalising a recommendation for psychological therapy conveys the idea–unintended or otherwise—that ME/CFS is either psychological in origin or psychologically propagated. Even if this is unintended, reinforcing this idea maintains the stigma associated with ME/CFS.
A Healing Narrative
Finally, there is also the issue of iatrogenic harm to be considered. With any emerging condition, not every health practitioner is sympathetic to the patient experience. Serial rejection by health professionals both lowers patent’s self-esteem and creates mistrust in the health system. Many with ME/CFS go for years without diagnosis, support and treatment, and because of this there is increased risk of psychological trauma. This poses a problem in cases where patients who might benefit from psychological support are (understandably) resistant to it. Here patient advocacy groups may provide a bridging and mediatory role.
Two issues are critical in the ME/CFS narrative. First, it is damaging to patients when a distinction is not made between treatments that improve ME/CFS and those that help the patient live with ME/CFS. Second, it is damaging to patients to imply that psychological treatments will assist all patients with ME/CFS. This fuels existing prejudices that ME/CFS is substantially psychological in nature.
A healing narrative is needed to improve the integration of ME/CFS patients into the healthcare system. This begins with health professional bodies providing a balanced account of ME/CFS, one which considers the sociological impact of living with a condition with considerable stigma relating to it. This can be achieved while remaining faithful to the (limited) research evidence as to the pathophysiology of ME/CFS and the patient histories that we know a lot about.
Conclusion
The health profession should recognise that over-psychologising ME/CFS has detrimental consequences for the entire patient community. At the same time, because ME/CFS is generally a chronic condition, people with ME/CFS should be open to the benefits of receiving a tailored program from a psychologist or psychiatrist. However, unless there is an obvious co-morbid condition such as a severe mood disorder which requires treatment in its own right, this should be optional. A fresh narrative which provides a balanced perspective on ME/CFS needs to be developed so that people with ME/CFS are better integrated into the health system.
Paul Leverenz
Chairman
On behalf of ME/CFS Australia
Thanks to Dr Nicole Phillips, medical advisor to ME/CFS Australia (Victoria) and medical editor of the Emerge Journal, for providing useful feedback to drafts of this document and whose input sharpened up the final version of this document considerably.
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[1] Overview of Canadian Clinical Guidelines
[2]Dr Eleanor Stein Guidelines for Psychiatrists
[3] DEFINITION: Harm induced in a patient by a physician’s activity, manner, or therapy.
[4] Hickie I, Davenport T, Wakefield D, Vollmer-Conna U, Cameron B, Vernon SD, Reeves WC, Lloyd A; Dubbo Infection Outcomes Study Group. (2006).
Post-infective and chronic fatigue syndromes precipitated by viral and non-viral pathogens: prospective cohort study. BMJ. Sep 16;333(7568):575.
[5] Price JR, Mitchell E, Tidy E, Hunot V. Cognitive behaviour therapy for chronic fatigue syndrome in adults.
Cochrane Database of Systematic Reviews 2008, Issue 3. Art. No.: CD001027. DOI: 10.1002/14651858.CD001027.pub2.
[6] Darbishire L, Ridsdale L, Seed PT. (2003). Distinguishing patients with chronic fatigue from those with chronic fatigue syndrome: a diagnostic study in UK primary care.
Br J Gen Pract 2003;53: 441-5
ME/CFS Australia is seeking to make a better world for those with ME/CFS. But what does this mean? It is vital that we can articulate what this entails so we know where are headed, and plan the steps in-between. We would like to share what we’ve come up with so far in what will part 1 of this discussion.
In October 2009, ME/CFS Australia convened a summit in Canberra where it made a number of positive decisions related to its future. It is now committed to establishing operations to deliver programs at a National and International level that will improve the wellbeing of Australians affected by ME/CFS. This is the first in a series of communications outlining our position and our dreams for a better world for people affected by ME/CFS.
Welcome to ME/CFS Australia’s blog. Our vision is for a world where ME/CFS is no longer a serious condition that devastates the lives of those affected with it.
