Thursday, December 31, 2009

Book Review by Ellen Goudsmit

Book review:

Fernie, B and Murphy, G. Coping Better With Chronic Fatigue Syndrome/Myalgic Encephalomyelitis: Cognitive Behaviour Therapy for CFS/ME (Paperback) London: Karnac. 2009. £12.23 (as of 31st December 2009).

I am a Health Psychologist who has specialised in CFS and ME for over 15 years. I abstract every scientific publication on both disorders for the Melvin Ramsay Archive, and completed a PhD on ME and post-viral syndrome. I am a Fellow of the British Psychological Society (i.e. quite senior). As a clinically trained psychologist, I know about CBT; what it can do and what it can't. I personally believe that CBT is a very helpful way of dealing with anxiety, fear, depression and other emotional problems associated with having a medical disorder. I have no problems recommending CBT when appropriate, but it has to be based on a sound understanding of the conditions, an up-to-date knowledge of the research and above all, respect for the patient.

This book shows respect for the patient but little understanding of the research (hence physiological changes are linked solely to emotions, not evidence of viral activity or metabolic abnormalities), and the authors refer to deconditioning, shown quite a long time ago as playing no significant role in CFS. The theory underpinning this version of CBT is a mix of the CBT model ('CFS is largely a result of maladaptive beliefs, a lack of activity and the physiological results of stress') and something new which can be found on pages 129 and 134. For example, the authors state "the brain and body may have become primed to have the same maladaptive response to any stressor and that maladaptive response has become a conditioned (learned) response." It's this which interested me as a psychologist. The idea, as far as I understand it, is that we, or our brains, learn to associate stress (e.g. divorce) and the symptoms of CFS. Other stressors would then be able elicit 'CFS' through generalization. Except, it doesn't work that way. Although similar stressors to the original one can elicit a lesser response, at least in dogs, the stimulus has to be presented at certain intervals, otherwise the response will extinguish. In real life, many patients relapse and remit, or get worse. So point 1 is that CFS is not a lesser response and this requires an explanation. Then there is point 2; the issue of discrimination. The authors suggest any stressor can trigger 'CFS'. The following is a classic study in psychology. Rats given a sweet solution and X-ray felt sick, associating the sweetness with the nausea. They did not show distress when later tested with a strong light or noise. And there are other studies which demonstrate that one can learn an association between X and Y, but that exposure to Z won't have an effect. The stimuli (stressors) have to be similar to the original conditioned one, so with respect to CFS, the stressor would have to be significant, e.g. after a divorce, one would lose one's job, experience the death of a loved one, be beaten up etc, all within a period of 3-6 months. One can imagine these as capable of producing severe distress and ill-health. Missing the bus or the fridge breaking down should not elicit a conditioned response. We do not expect these 'hassles' to lead to severe symptoms. (If there were a lot of them, occurring one after the other for many months, then meditation, and a version of CBT with a different emphasis would be more appropriate).

I think CFS specialists might have noticed if the majority of patients have a history of major negative life events preceding and subsequent to onset. Instead, the psychological literature has focused on unhelpful beliefs and inactivity. But beliefs and inactivity do not cause enteroviral infections (Chia and Chia 2008), intolerance to alcohol or swollen glands.

In my view, the book isn't really about CFS but about chronic stress. The case histories give a clue. A man caught a bug and went back to work too quickly, hence a discussion about perfectionistic personality and stress. I consider that reasonable but would I diagnose that as CFS? No. A lady had a messy divorce which is very stressful, and reports fatigue, aches and pains, and tender glands. Again, is that CFS or chronic stress? Will CBT help them? Yes, it probably would. Will this version of CBt help genuine CFS? I doubt it. The research has shown only modest effects and that's only really for fatigue.

Who might benefit from this book? A 12 year old with CFS. Adults with anxiety and stress due to overload. Yes, stress can cause fatigue and all the other symptoms described in the book. Conversely, this is not a guide for people with acute onset, post-viral ME, with neurological symptoms, nausea and muscle weakness, all closely related to minimal exertion and other factors such as the menstrual cycle, changes in the weather etc. A much better intro to CBT is the guide edited by Sue Pemberton. The chapter on sleep is fine, the section on energy capsules describes pacing well, and the advice on dealing with worrying is sound. But the activity diary is poor without a space for symptoms so one can see connections. As for everyone getting deconditioned due to prolonged bed rest, isn't that an urban myth?

There's some unintentional humour. Having obviously seen a few individuals who need very basic, thought-by-thought advice, the book provides a list of activities to wind down. It goes like this (p. 43):
Record worries in worry book;
Wash and clean teeth;
Switch off lights;
Go to bed.

24 hours later, I wondered if the authors would include this in a book for patients with cancer or MS?

The above illustrates my main issue. There are touches of basic, sensible advice intertwined with an overly simplistic view of the illness-as-lived.

To conclude: there's good news and bad news. The good news is that the book is very short (135 pages). The bad news is that it isn't the best guide about coping with classic CFS and ME. There are better books. Yes, CBT is useful for some with ME and CFS. But I'm not sure this version is one I'd personally recommend.

Conflict of Interest: I have ME myself.


Dr. Ellen M. Goudsmit

Available via Skype: ellen.goudsmit

For information on ME and CFS, see:  

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