This book offers a programme for treating ME/ CFS which the author calls the fusion model. The author has chosen the term Chronic Fatigue (as is fashionable with psychologists) although she makes it clear she is also talking about ME and believes in the biological nature of the illness. There are two versions of this program, a medical and a nutritional although both involve a nutritional aspect, and both are to be combined with a psychological approach. The goal is to replenish the body and build psychological fortitude.
I had very mixed feelings about this book. The author shows a very good understanding of the mechanisms of ME/CFS but I can’t help feeling that a huge leap of faith would need to be involved if I were to follow one of the programmes. There is no evidence base for their efficacy; you are expected to trust the ‘clinical expertise’ of the creators. Something I might be more willing to do if it didn’t cost too much money. However both programmes involve a hefty investment in supplements, and the medical model would probably also require a private consultation. So whilst offering some hope, this book also requires you to commit to spending lots of money, without offering you any evidence that it will be worth it.
Chapter 1 offers a brief explanation of what is Chronic Fatigue Syndrome and who gets it. Chapter 2 looks at how it is diagnosed and includes the authors own check list. She identifies physiological causes of fatigue and lists other conditions with fatigue as a symptom to avoid confusion. She mentions post exertional malaise as a factor in identifying the illness as well as sleep disturbance and argues that the six month rule should not be applied as a diagnostic indicator.
Chapter 3 talks about how fibromyalgia and depression can be distinguished from CFS. She lists three types of depression and offers advice about what help to seek if suffering from one of them. She pragmatically recognises that a CFS sufferer could be suffering from depression independently from this illness, as a result of the biochemical changes involved in this illness or could develop it as a reaction to the dramatic change in their life situation caused by this illness. Chapter 4 explores the history of the illness and how the psychological theories have resulted in the current treatment options of Cognitive Behavioural Therapy (CBT) and Graded Exercise Therapy (GET).
For me Chapter 5 was the best chapter of this book explaining the true causes of CFS. I found her pictorial model was very similar to the model I have created for my book. She talks of predisposing factors, trigger, body breakdown and maintaining factors. I particularly related to her description of the 5 systems that can be involved in the bodily breakdown: the autonomic nervous system (ANS); the hypothalamic-pituitary-adrenal axis; the limbic system; the immune system; and the gastro-intestinal system. However I would disagree with the importance she gives to the role of stress in this illness. In my opinion it doesn’t always play such a key role as she casts it to.
Chapters 6 and 7 describe the medical and nutritional options for replenishing and strengthening the body. Each option consists of responsibly planned stages which make a lot of sense, but where is the evidence that the prescribed actions achieve their goals? Both models involve following a special diet described as a hunter gatherer diet which bears a strong resemblance to Dr. Myhill’s Stone Age diet. Stage one of the medical option involves a prescription medication which is not part of the NHS protocol for ME/CFS treatment. Does this mean that a private doctor would need to be approached in order to take this option? This is not made clear in the book. The nutritional option involves 16 different supplements. It seems to me that in order to follow one of these programmes you would have to have a lot of money to invest in it. My scepticism receives another boost when the author stresses how long this course of action can take, that it’s important to be patient and believe that you are getting better, and to remember the mantra that ‘things must get worse before they get better’. All of this may be true, but how do you really know that what you are doing is really helping? It seems like a very expensive experiment. If things get worse before they get better, how do you know that you are healing yourself and not just bombarding your body with foreign substances when it’s already struggling to detoxify and recognise the good from the bad?
Chapter 8 takes a cognitive behavioural approach to developing psychological hardiness, focusing mainly on ‘faulty thinking’. I personally don’t find this a very helpful approach. If I did the Mary Burgess book explains it a lot better. Chapter 9 gives advice about formulating empowering beliefs. I do agree with the premise that it is important for us to be able to take a positive attitude towards overcoming this illness. The advice offered here about how to do so might suit some people but I believe that there are many other ways too. Chapter 10 offers some very basic advice about coping with stress and sleep hygiene.
Chapter 11 talks about getting active and getting fit, but is basically a description of Graded Exercise Therapy (GET). I have a problem with the ‘when’ of this approach. I got the impression she was suggesting GET as a way of reconditioning once you regain your physical health, which is fine as long as you are truly over this illness. However if it is used as a way of building fitness whilst living with this illness, then I believe it is totally inappropriate unless moderated with a daily assessment of ability level, which is not mentioned here. I was somewhat horrified at her suggesting water aerobics and Pilates as appropriate exercise for the moderately able. Any kind of forceful movement or movement which uses the same muscle repetitively is not advisable whilst still suffering from this condition. I got the feeling that the author’s cognitive-behavioural psychologist persona lost track of the real nature of the condition whilst writing this chapter.
Chapters 12 and 13 offer sensible advice about dealing with relapses and managing relationships. However I found some of the advice rather condescending as it seemed to assume a psychological immaturity in the reader. I guess that’s hard to avoid though when giving advice.
This book takes a refreshingly positive approach to tackling this illness. I have a lot of respect for the authors description of the biological mechanisms involved in the illness. I would love to believe that the programmes to replenish the body would work but cannot afford to give them a try. I don’t share the author’s opinion on the extent to which psychological mechanisms play a part in this illness although I am sure that her advice will be useful for some.
Thanks for reviewing Julie, it will save me wasting any money on this book. 16 supplements is just ridiculous, & as you say, no evidence for their efficacy, or for any of their other recommendations. I don’t know what qualifications these authors have, but I will be supporting further research into ME/CFS not wasting money on books which are just guessing the causes & cures.