There are many books aimed at people with ME/CFS. However as yet I haven’t found one that offers easily accessible, comprehensive self-help advice in both a down to earth, practical manner that also takes a holistic approach to health. I’ve been writing my book so that every sufferer can find everything they need to know to empower them to take control over their health and happiness in one easily accessible parcel.
Here is a brief review some of the books I’ve turned to for help. I have rated them in terms of whether I think they are worth reading. This rating tries to balance how helpful the information is, with how easy it is to read. ***** represents very useful and easy to read information (I haven’t found one yet), * represents not very helpful and/or difficult to read.
Two outstanding books about ME were both written in the last century. They are both written by doctors who suffered themselves from ME and combine medical arguments for the existence of a physical nature to the illness with some advice for how best to manage it. Although extremely reassuring, they both had to tackle the pervading misunderstanding and misjudgements that this illness was ‘all in the mind’, a form of mass hysteria, ‘yuppie flu’ etc. and both used many words to do so. It took me over a month to struggle through one of these books when I was first ill. Although worth a read, they are now a little out dated and take a fair amount of concentration:
Living with M.E.: The Chronic / Post-viral Fatigue Syndrome. Dr Charles Shepherd. 1999 Vermillion ***
M.E.: Chronic Fatigue Syndrome: A Practical Guide. Dr Anne Macintyre. 1991 Thorsons ***
Since these were written most other books have been written about Chronic Fatigue Syndrome as opposed to ME and seem to focus on the psychological and behavioural aspects of chronic fatigue. Most of the self-help books take a Cognitive Behavioural approach which focus solely on how symptoms can be explained by maladaptive thoughts and behaviours. I have little doubt that CBT could be of great benefit to many people with this illness. Learning how to manage an extremely unpredictable and debilitating illness presents many psychological challenges. However, so far, the CBT writers have limited their appeal by failing to communicate an understanding of the true (physical) nature of this illness. The writer’s assumptions that this illness has a psychological cause, is both frustrating and potentially dangerous. I believe that a good self-help book would combine the pragmatism of the CBT approach with a true understanding of the physical nature of the illness. I have reviewed the following book in more detail in an earlier post:
Overcoming Chronic Fatigue: A Self-help Guide using Cognitive Behavioural Techniques. Mary Burgess with Trudie Chalder. 2009 Robinson **
There is one book that pragmatically offers a lot of self-help advice at the same time as demonstrating an acceptable understanding of the nature of ME/CFS. It is written by a group of professionals, mainly occupational therapist who have worked in the Leeds and West Yorkshire ME/CFS service and offers very appropriate, clearly written advice. However I find this book extremely clinical and at times condescending. It takes a mainly behavioural approach to tackling inappropriate coping mechanisms. For me a good self-help book should take a more empathic holistic approach. I also felt this book lacked an awful lot of material particularly in regards to cultivating happiness and fulfilment, relaxation, meditation and appropriate exercise routines:
Fighting Fatigue: Managing the Symptoms of CFS/ME. Sue Pemberton and Catherine Berry. 2009 Hammersmith Press Ltd. ****
Another book by a Canadian occupational therapist also offers a very thorough approach to managing this illness. However the concepts are difficult to grasp because of their poor delivery, perhaps lost in translation from her native French:
Breaking Free from Persistent Fatigue. Lucie Montpetit. 2012 Singing Dragon ***
Another book that makes some sense offers a step by step programme for tackling the illness with a medical and a nutritional option: the medical option involving prescription medications and the nutrition option involving lots of supplements. Both of these options would be extremely expensive to follow and would be best undertaken under supervision. I have written a fuller review of this book in a previous post:
Beating Chronic Fatigue: Your step-by-step guide to complete recovery. Dr Kristina Downing-Orr. 2010 Piatkus ***
Other books published take one particular approach to treatment, be it Osteopathy, or treatment with Essential Fatty Acid supplements:
Why Me? Alex Howard. 2009 Cherry Red Books -interesting autobiography aimed at promoting the Optimal Health Clinic **
The Perrin Technique: How to Beat Chronic Fatigue Syndrome/ME. Raymond Perrin. 2007 Hammersmith Press ltd (70,726)-Worth a read if you are thinking of investing your money in this popular form of treatment ***
Chronic Fatigue Syndrome: a Natural Way to Treat M.E.:Professor Basant K. Puri. 2005 Hammersmith Press ltd. (132,297) -Extolling the virtues of taking Essential Fatty Acid supplements, it convinced me but it’s a lot of effort for small reward **
Do you have a favourite book that helps you through this illness? Do you think there is still a need for an easy to read book that promotes improving health and happiness? I’d love to hear your comments.
What would be awesome is something, or even a chapter, that gives advice on how to deal with , or minimize the damage from situations you either find yourself in unexpectedly or that you can’t remove yourself from. Rather than the usual just avoid or deal with the consequences. i.e parents with youngsters, the odd bit of fun you allow yourself, visits from folk or to folk, life’s necessities (showers, dressing, managing cooking with at least a degree of real ingredients etc) e.g maximizing rest time, using aromatherapy, daily living aids.
So basically real ideas to pace as effectively as possible, within a general family environment, when often still working to keep a roof overhead.