Before I review this book, let me declare a potential conflict of interest. Frankie Campling and I go back many years. She helped me cope with a severe inner ear infection, which occurred at the same time as the discovery of a malignant tumour in my breast. Mrs. Campling got me through this turbulent period, for which I shall always be grateful. Not surprisingly, I hoped that I would really like the book.
Having gone through the contents twice (and some sections three times), I have to admit that I don’t. Some parts are good but a lot is deeply disappointing. Here’s my report.
To begin with, let me focus on the book’s strengths. Particularly useful are chapter 20, on the things, which sometimes stop us from being sensible, and chapter 25, on communicating with others. There is also a sympathetic and practical discussion on dealing with pain (chapter 17) and some worthy thoughts and warnings about alternative medicine. The chapters on unhelpful beliefs (23) and how to approach problems (24) are very basic, but then, some patients need basic information.
The book is clearly laid out and reasonably well-written. However, it doesn’t take long before you come across the first major flaw. Despite the reference in the title to ME, the text doesn’t actually deal with this condition. It doesn’t even include an accurate description, dismissing it as an “acute, medically unexplained illness that occurred in the 1950s among the staff of the Royal Free Hospital, London”. Later on, the authors state that some people believe it to be a severe form of CFS but that this is as yet unproven. Their approach reflects both a lack of knowledge and understanding of the disease. As many of us have tried to explain to Dr. Sharpe, ME is not identical to CFS, by definition. CFS is currently defined in terms of unexplained fatigue lasting at least six months, whereas ME is defined in terms of fatigue, which follows minimal exertion (NB the link with activity) plus the delayed recovery of muscle strength. In other words, it’s not just any type of fatigue1. For those who are not familiar with the illness, let me also note that ME patients share three other features: circulation problems (e.g. cold extremities, sudden facial pallor) and signs of central nervous system involvement (dizziness/giddiness, sensitivity to light, emotional fragility etc The symptoms also fluctuate much more, not just from day to day but from hour to hour. ME patients are therefore not ‘tired-all-the-time’ (If that’s the case, doctors should check levels of cortisol, thyroid hormones etc). ).
So why do doctors still confuse ME and CFS? Well, it is difficult to differentiate ME from most cases of post-viral syndrome (which is probably why they are classed together by the World Health Organisation) and both overlap with post-infectious, strictly defined CFS (hence the patient organisations’ references to CFS/ME). However, that’s where the similarities end. To cut a long story short, ME has very little in common with the simple fatigue syndrome (tiredness, stress, aches and pains) described in articles by Sharpe, Wessely, Manu and the researchers at Nijmegen. The choice to equate ME with CFS is probably more political than scientific2.
Does this matter? In my view, it does. When researchers use broad definitions of CFS, they end up with a mixed patient group, most of whom show no signs of ongoing disease. When they use stricter definitions, they find more evidence of infection (e.g. Lerner et al), abnormalities in the immune system and disordered functioning of the brain. It follows that advice which is appropriate for the former may not be for the latter. Thus doctors cannot reassure people with ME or strictly-defined CFS that the infection has gone and that their symptoms are the result of inactivity and deconditioning. Accordingly, patients should not ignore their ‘fatigue’ and push themselves beyond their limits, (recommended and seemingly helpful for broadly-defined CFS). The problem is that this book approaches CFS as a single problem. It’s a strange approach to take, given what we have learnt since 1994. Frankie Campling wasn’t aware of the difference between ME and CFS until I sent her some articles a few weeks ago. But Sharpe has known for many years.
On the basis that most symptoms can be explained in terms of inactivity, unhelpful beliefs, poor sleeping habits and stress, the book emphasises one approach to treatment. In a nutshell, it’s largely cognitive-behavioural, focusing on changing what we think and what we do. As someone who has been following the research since 1984, I consider this not only to be out-of-date but also inconsistent with a substantial body of evidence. In a sense, it’s like saying that a migraine is a sort of headache and because aspirin and relaxation helps two-thirds of sufferers, it should also be first choice treatment for those with migraines. We can do better than that! The reality is that aside from ME and post-viral syndrome, the definitions of CFS also covers people whose illness was triggered by exposure to organophosphates, to individuals with sensitivities to foods, low levels of certain hormones, as well as people whose fatigue is perpetuated by a lack of activity, depression etc. Why should one treatment fit all ?
Clearly, the advice on dealing with simple fatigue, pain and emotional distress is going to help many patients, regardless of the cause. It will enable them to stabilise their condition if they have been guilty of overdoing things, and it will help them deal with the psychological factors which can undermine recovery and make them feel even worse. The problem is that there’s little more. The book’s focus, despite the title, is too narrow and too strongly linked to one theory. Consequently, it will be of limited value to a person with ME and uncomplicated, strictly-defined CFS, whose illness is not exacerbated to any significant extent by unhelpful beliefs or excessive rest3.
To be fair, the authors do admit that there may be other causes for the chronicity of the fatigue, but it’s clear they were not thinking of viruses or ‘physical’ disease. Hence, there’s a less than balanced approach in their advice on dealing with individual symptoms. For instance, palpitations, nausea and diarrhoea are listed under anxiety-related symptoms but there’s no suggestion that they could also represent a sensitivity to foods or that the nausea may be related to a problem with the balance system. There’s sound advice on dealing with anxiety and a cursory discussion of IBS (which is also strongly linked to stress), but that’s as far as it goes. I’d have had no problems with this if the book had been on simple chronic fatigue, but if you have ME and your nausea is a result of a balance disorder, you might benefit from knowing that there are various tablets, which can help, that special exercises are worth a try and that different glasses could make a difference. But that would be to admit the possibility of neurological disease and that’s not part of the plan. For the same reason, there are no tips on symptoms like the frequency of micturition (passing urine, where the advice should be to see the doctor, but if there is no infection, to try standard pelvic floor exercises) and visual disturbances (read less? tinted glasses?). The section on dealing with relapses (page 192) is totally inadequate and the information about multiple chemical sensitivities and diet is at best out-of-date. To put it another way, this is not an accurate or useful basic introduction to coping with CFS.
In terms of the coverage of the possible psychological influences, their concept of CFS makes these sections very hard going. Of course, many patients with ME develop psychological problems, as do people with cancer and MS. Hence there is a great need for a good source of information on how to cope. However, this book isn’t it. Some of the advice is fine, such as the details about pacing (see below) and there are also some good tips, such as the value of an egg timer (to be used when you are likely to get engrossed in something, and forget to watch the clock). But this is not a fair and realistic account of what most people with CFS think and suffer, and that’s what is going to make it irritating to read if you don’t fit their stereotype.
I missed a reference to perfectly sensible patients who may run into problems after a while. I missed the recognition that people with CFS respond to their illness in the same way as people with cancer and other disabling disorders. Most do not give in to their fear on a daily basis and they do not dive into their bed during the day without a good reason. The majority are normal, intelligent people who are confronted with a severe illness and a lack of medical support. Indeed, most cope extremely well, given the circumstances. They need tips and they could benefit from warnings about the traps (see later) but instead, the book is dominated by information, which you expect in a guide on depression and psychosomatic illness. It not only lacks balance, but there is little evidence that either author truly realise what the majority of ME sufferers go through.
Compare and contrast! Dr. Melvin Ramsay referred in one of the shorter papers to the patients’ courage. Sharpe has never written anything positive about CFS patients in all the years he has been writing on the subject and he doesn’t do it in this book, which is specifically aimed at patients. I’ve never seen him use words like sensible, let alone courageous. His descriptions always remind me of the way Hollywood used to portray Indians. (Weren’t they virtually all primitive savages who were a constant threat to the poor, innocent white settlers?). Well, Sharpe, like Wessely, also goes in for one-dimensional stereotypes. Ignoring the evidence to the contrary, they have consistently portrayed CFS patients as sharing the same unhelpful beliefs and the same unhelpful behaviours. After ten years, it’s all rather tedious.
If you believe I am being harsh and intolerant of another scientist’s view and you believe that his ideas are perfectly rational, ask yourself the following:
If we have to stick to evidence (as advocated in the book), then Dr. Sharpe would have acknowledged that there is no research on CFS linking inactivity with any symptoms other than fatigue and emotional distress, and that while cognitive behaviour therapy (CBT) seems to have a beneficial effect on these symptoms, the effects may not last (he knows this as he was the one who reported it). He would also have admitted that there is no evidence whatsoever that CBT is particularly helpful, or better than counselling, for people with uncomplicated post-viral syndromes or strictly defined CFS4.
Of course, Campling and Sharpe are entitled to their opinions but please note that this book is called ‘CFS. The facts’. Not chronic fatigue. Our personal views’. Secondly, Dr. Sharpe writes as a physician and ‘expert’. I am reminded of the comments made by The Hon. Mr. Justice Gray at the end of the court case involving the Holocaust denier David Irving. He noted that “an objective historian is obliged to be even-handed in his approach to historical evidence: he cannot pick and choose without adequate reason“ (para 13.24). In my view, this is even more true for scientists. We do not expect doctors to disregard or dismiss sound evidence or to adopt positions, which run counter to the weight of the evidence. We don’t expect them to misrepresent or put ‘a spin’ on the evidence so as to make it conform to their own preconceptions. This is a sign of distorted thinking, or in the case of Mrs Campling, a lack of knowledge combined with admirable loyalty. However, I find it extremely hard to read advice about dealing with unbalanced thoughts from a pair who clearly have their own problems in this respect. Had they dealt with the facts and then proceeded to offer their own opinions, the book would have been more balanced and credible. But they didn’t. The omissions are not coincidental5. Balance disorders and frequency of micturition are difficult to explain in terms of beliefs and lack of activity. That’s why they are not mentioned. The facts? Well, a selection perhaps.
Another omission is the lack of recognition that a small proportion will continue to suffer severe ill health, despite pacing and sensible beliefs, for many years. Books dealing with breast cancer on multiple sclerosis recognise that some people won’t do well, despite all the treatment and the help available. In the breast cancer world, the message is that if the illness cannot be controlled, then there are different people, different organisations and different treatments who can help to minimise the distress. It’s positive, realistic and practical. However, there’s nothing like that in this book on CFS. Their approach is that if you think sensibly and keep active, then you’ll almost certainly improve. I missed a sentence or two for those who are severely ill and may benefit from hints like buying a small office fridge to keep near you if you spent a long time upstairs and the only fridge is downstairs, and of course, the value of the Internet (I know of disabled people who have been given a computer by their local authorities). Instead, I could only find one sentence along the lines that patients shouldn’t consider getting ‘invalid’ aids until they were really needed. When exactly is that? What do they think most of their readers are suffering from? In the UK, some aids and appliances are available for hire. That’s surely worth considering?
In my view, these flaws spoil what could have been an excellent book. A bit of dispassionate objectivity would made it much more accurate and readable. It’s a real shame since in my opinion, everyone with ME should read chapter 20. This discusses the traps, which can stop people with all sorts of serious/chronic illnesses from being sensible and doing what’s right for them. In fact, I can’t think of any other book on CFS, which covers this subject as well.
Among these
‘obstacles’ are fear and resistance, which can stop people with ME from
trying a new strategy and testing their limits regularly. Then there is pride,
and the excuses, which may lead some to ignore their fatigue until it is too
late.
Anyone can fall into such a trap. It doesn’t mean that you have a psychiatric disorder or that you are unintelligent. It only means that you are human being under stress. That is the reason why I always recommend that every patient with CFS should have regular counselling from someone familiar with disability in general, and CFS in particular. Aside from the support, these people can alert you to potential traps before you fall and help you get out should you have fallen in one!
People need this outside help. Many patients will be too tired or ill to recognise the traps in their own lives. However, if counselling is not an option, then devour chapter 20, before passing it on to a partner or friend and asking them for help. If you can’t drag yourself away from the computer when your egg timer has gone off or you’re telling yourself that another five minutes won’t do any harm, even when your eyes are screaming for a break, then hopefully they can remind you that this isn’t pacing and that overdoing it won’t help in the long term. The problem is that most patients will probably feel so angry by the time they reach chapter 20, that the information may not get the consideration it deserves. (My advice: read chapter 20 before you read anything else).
Finally, a word about the pacing programme described by Campling and Sharpe. In short, it is not traditional pacing (which I know well since I developed it), but more a combination of pacing and graded activity. Perhaps it should have been called graded pacing or gentle exercise within limits? Basically, in pacing, what you do is determined by how you feel or if you are doing something out of the ordinary, your most recent experience. Unlike the graded activity programmes originally developed by Sharpe and Wessely, it’s not linked to a plan or targets. As a general rule, you should stop when you begin to feel moderately tired, or where you start having symptoms like nausea or obvious weakness in the legs or arms6. In other words, you don’t ignore your fatigue and you don’t have to push yourself according to a schedule. If one day you feel that you can do ten minutes worth of something without any sign of problems, then that’s fine. If the next day you feel you can only do five, that’s fine as well.
Like Campling and Sharpe, I recommend that people can try to increase what they do every couple of days. Your limits may have changed so regular checks are important. As long as you stop when your body tells you it’s had enough, this won’t harm you. In fact, pacing in its various forms is a good way of avoiding overexertion and hence avoidable relapses. That will help to stabilise the condition, and may promote recovery.
To conclude: this is a
useful addition to the patient literature on fatigue and a valuable source of
specialist information (e.g. on pain, pacing and the ‘traps’). However, if
you want a good, reliable introductory guide to CFS in general, and ME and post
viral fatigue syndrome in particular, I’d recommend the latest edition of
Charles Shepherd’s book or the more holistic approach of Anne Macintyre.
Finally, if you are interested in a reasonably accurate description of CFS (the
original version, before the psychiatrists turned it into something else), do
read David Bell’s superb new book of case histories. Then compare and
contrast.
Ellen Goudsmit PhD
