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An essay on psychology and ME/CFS
Thursday 26 November 2009
An Essay on Psychology and ME/CFS
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 and Dr Stein’s Guide for Psychiatrists 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 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’ 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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