It never fails to amaze me just how wound up I can still get by people who claim to be experts completely ignoring the fact that ME/CFS is an illness with a physical cause. (I think I may still need to work on my non-defensive attitude!). The authors try to mask their obvious assumption that this is a psychological illness stating that all illness has a psychological aspect (I can agree), but then they go on to stress how every symptom can be explained in terms of the sufferer’s thoughts and behaviour patterns (nooooooooooooo!). Basically how we responded to an initial illness or our overactive perfectionism is the cause of our developing chronic fatigue. Ahhhhhhhhh!
On a more positive note I do believe that the tools and techniques based on monitoring activity and gradually increasing it could be of great benefit to many people with ME/CFS as long as they are used carefully, taking into consideration how our daily ability level can change quite unpredictably. The book is well written and the advice clearly offered. However I find the stance that they take on expecting symptoms to worsen when beginning the program a very dangerous one. They seem to assume that the ME/CFS sufferer cannot recognise the difference between feeling a little more tired because we’ve increased our activity and knowing that we’ve overdone it… Apparently we worry too much about overdoing things and doesn’t accept the inevitable and ordinary increase in fatigue after increasing activity! According to the authors, we are to expect to get worse when we increase our activity and this could last for a couple of weeks before we will notice any benefits. I strongly disagree. We can expect to feel more tired when we increase our activity but if we feel a lot worse and/or our increased symptoms persist beyond a day or so we have done too much! And if we push too hard for 2 whole weeks, waiting for these benefits we could set ourselves back for months! The key to managing this illness is learning how to listen to your body. Some of the tools in this book if used appropriately could help with this, as long as you can ignore some of the authors’ dangerous assumptions.
I can highly recommend their advice on improving sleep. If you can ignore their vaguely cloaked assumption that sorting your sleep out will be the end of your fatigue, then it will be well worth reading this chapter.
The advice on tackling unhelpful thoughts could also be useful if you can get over their assumption that your unhelp thoughts will either be fears about making the illness worse or will be to do with your perfectionism. It’s not unrealistic or unhelpful to have some fears about how we might be making our illness worse when our daily ability levels seem to change so unpredictably and it can be really hard to judge when we are over doing it. I’m sure many people who have this illness were highly motivated, responsible and productive people. But being a productive member of society does not equate to being a perfectionist.
The problem solving section of this book also offers tools that could be helpful, however it does seem to be targeted at people who have done nothing for so long that they are physically deconditioned and lacking the mental ability to cope with even the simplest of everyday tasks. A small minority of sufferers who were not given appropriate advice early on in their illness may have reached this stage of helplessness but I don’t believe this is common to all ME/CFS sufferers.
If this book had been written by someone with a true understanding of the nature of this illness then it could have been an invaluable tool. I’m glad I was able to get this book out of the library as I personally wouldn’t have wanted to support the authors’ misguided assumptions by buying this book. This book might be helpful though if you think some structure would help you to monitor and manage your sleep and activity, or if you don’t feel you are coping very well with the worries and stresses caused by this illness.