Ellen Goudsmit Reviews Handbook of CFS, M.E. Society of America

As an orthodox scientist, I expect books by experts to offer me accurate information as well as authoritative analyses and insights. I want to learn but above all, I want to be inspired. What I do not expect is to see colleagues being misrepresented, I personally don’t want to be misled and I certainly do not want to see researchers peddling negative stereotypes in order to further their personal agenda. In my previous specialism, virtually all books fulfilled my expectations. The information was invariably reliable and I never felt manipulated or patronized.

But that was before I began to study and research ME and CFS. Previous texts have been interesting, not just for the information they contained, but for the information they did not. Many were so selective, they read like party political pamphlets. It was almost as though the editors forgot that readers like both sides of the story, so they can make up their own mind. So you got the equivalent of the IRA being asked by the BBC, not only to discuss their own aims, but also those of the Unionist paramilitaries. I’m talking unbalanced. I’m talking spin.

I still rely on Charles Shepherd’s book, for even though the research section is modest, it’s accurate and objective. Indeed, it’s more authoritative than any medical textbook I’ve read since 1991! Could this new tome change my mind?

I made a checklist of what I expected. Obviously, it had to include accurate information on CFS, covering diagnosis, aetiology and treatments. But being CFS, I also wanted to see an acknowledgement of the politics. I wanted someone to examine the effects of lumping disorders on the basis of one shared symptom, i.e. fatigue; I wanted to read about the consequences of the psychologisation, and the widespread acceptance of various assumptions, e.g. that most patients are unfit and that this is a main reason for the perpetuation of their fatigue. An accurate section on ME would impress me, especially if it included the latest research showing how it differs from CFS, but what I was really looking forward to was an expert noting that CBT is only helpful if one restricts one’s assessment to two or three symptoms. Like tiredness and emotional distress. So far, I’m the only scientist who has pointed that out in public. Would this book say it like it is?

Contents

I got one wish: a chapter on ME and how it differs from CFS. However, Byron Hyde’s view of ME is a personal one. Like all illnesses, specialists don’t always agree with one another and colleagues such as Dr Parish and Dr Dowsett might quibble with certain comments on the symptomatology. For instance, Dr Hyde doesn’t mention one difference between ME and CFS, the delayed recovery of muscle power after exertion ends. Both Drs Ramsay and Parish considered this an important characteristic of the illness, but Hyde only refers to muscle fatigability. (CFS includes ‘post-exertional fatigue’, but it’s not a major criterion and the phenomenon referred to by Dr Ramsay is more specific.) Still, there is lots of information on the disease which few of us would argue with. There are his observations on cardiopathy and the need for a proper investigation of heart function, the importance of epidemics as a source of knowledge and the discussion of the various abnormalities found in the brain. And I learned something new, namely, that he identified an enterovirus in 10% of his acute-onset patients, which resembles Echo 25. ME has been linked to enteroviruses for many years, so this finding makes sense. In all, a must-read chapter, written by one of the most experienced and honest specialists in the field.

The next chapter I read was another personal view. It was the chapter dealing with CBT by Gijs Bleijenberg and colleagues. I approached it as someone trained in behaviour therapy, and with specialist knowledge of the literature. Would they stick to the evidence, or as before, hype beyond the call of duty?

They state that their CBT protocol is directed “at decreasing somatic attributions and the patients’ focus on bodily symptoms, increasing their sense of control over their symptoms, and restoring the balance in activity patterns”. From thereon in, it was biased and disrespectful. The negative findings from Lloyd et al (1993) were dismissed in the traditional way (patients needed more therapy, even though Powell et al (2001) got good results in a much shorter time). The five year follow-up study by Deale and colleagues is described as showing “lasting benefits…in the patients”, as though all improved. The facts are that Deale et al (2001) included only 25 of the patients from the CBT group, and 68% of these reported improvement. At the same time, 45% still met the criteria for CFS, about half were still cases on the General Health Questionnaire (which measures emotional distress) and the majority continued to report higher than normal levels of fatigue on the Fatigue questionnaire. Suffice to say, the additional information relating to the size of the sample and the modest benefits was not included. Nor were the more disappointing results of an even larger follow-up study (Akagi et al 2001). When it came to describing their own research, there was no mention of the high drop-out rate and variable outcomes. However, they admit that the protocol “was not effective for all patients”. Indeed!

Bleijenberg and colleagues assume that when it comes to the symptoms of CFS, there is no immune dysfunction and no persistent virus “or other physical causes”. Perhaps they should have read some of the other chapters in this book. It’s the CBT school’s famous reductionism, where if research has not found a medical explanation in every patient, it can be assumed that there is none. And ‘if it ain’t physical’, then it’s almost certainly non-physical, and amenable to psychiatric interventions such as CBT. The rest of us aren’t quite that sure. We haven’t determined the causes of CFS yet. Therapists like myself wouldn’t dream of challenging patients who believe that their symptoms might be ‘physical’. On what basis? Routine laboratory tests? (See chapter by Hyde). Psychologists may not know much medicine but they can’t ignore findings simply because they don’t understand them. Yes, it is helpful to consider ways of reducing the severity of symptoms, and if psychological factors like unhelpful beliefs contribute to those symptoms, CBT can be very useful. But if you are not sure about an illnesses’ origins, you can say so, without affecting the efficacy of your therapy. As others have shown, CBT can be successful if you do not manage to change attributions (eg Bonner et al 1994). Perhaps the authors were so sure because they only select patients whose fatigue and pain are clearly related to psychological causes. But that doesn’t mean that every patient with CFS is ill due to beliefs and behaviours. This is where you expect some dispassionate objectivity. And it’s not there.

I don’t have the space to cover all my objections but this sums it up. To support the use of graded activity, Bleijenberg and colleagues present several graphs showing changes in actometer readings, before and after treatment. These were examples from the successes. But about half of the patients in their study did not do nearly as well (Prins et al 2001). And if one examines the actometer data from the group given CBT, the increases in activity were minimal (1). For instance, the baseline average was 67.9, which increased to 68.8 after treatment and to 72.2 at follow-up. About 4 points. Not unlike the medical care controls, who went from 64.9 to 68.7 in the same period. This is data published by a government body working for the Dutch Minister for Health. Of course, there’s nothing wrong with describing your success stories, as long as you give a reasonably accurate representation of the results as a whole. Does graded activity work for the average patient with CFS? Not according to their data, presented elsewhere. From their descriptions, it works for those who have become phobically afraid of activity (case-history 2) or who have some other non-medical problem (like very young children, a husband who doesn’t help as in case history 1). But many probably feel better as a result of the Bleijenberg protocol because they learn to prioritise differently and pace themselves better (2). There are no details of more problematic symptoms, like vertigo, visual disturbances, and seizures. This is also significant.

The authors don’t provide information about the success of their new protocol, which uses different approaches for those with high and low baseline activity levels. However, the following quote is illuminating. “Most patients who have been successfully treated will still report feeling tired frequently, although this no longer takes severe forms and recovery occurs more quickly. In other words, the fatigue has been normalised.” It’s a broad interpretation of the word ‘successfully’. There is an assumption that frequent tiredness is normal. Or maybe I’ve misunderstood.

What I do know is that we can’t be sure how many of these patients had CFS. The mean Karnofsky scores in their study were comparatively high so some may not have been sufficiently impaired by their ‘fatigue’ to fulfil the CDC, or any other standard criteria. The impression given is that CBT with GET is very helpful for pretty much everyone with CFS but I got the feeling that they were focused primarily on patients with fatigue and other medically unexplained symptoms, possibly somatisation and anxiety disorders, and that’s not the same thing. Incidentally, they admit that those who are already fairly active do not suffer from deconditioning. The other revelation was that the initial part of the protocol involves teaching people to pace themselves. And that’s a useful approach.

This chapter left me feeling angry. It’s too subjective, it oversimplifies CFS, and parts of it are terribly misleading. This is not just a personal view of CBT, this is political. I looked for another chapter for a more balanced approach to CBT, after all, the book is nearly 800 pages long, but there wasn’t one. None of the other contributors noted the limited use of CBT, the mass generalisations and the unproven assumptions on which protocols like Bleijenberg’s are based. Lapp, in his foreword, suggests that CBT works in part because of the attention offered. I don’t agree with that either. It probably works by increasing self-efficacy. Counselling does the same thing and is just as beneficial (Ridsdale et al 2001).

The same selectivity and lack of respect for the evidence can also be found elsewhere. Antonia Dittner and Trudie Chalder contribute a chapter on measuring symptoms and fatigue, but couldn’t resist the opportunity to do some additional party political campaigning on behalf of the CBT school. So there is a short section which speculates about inactivity as a contributor to fatigue but which fails to mention the lack of evidence supporting the role of inactivity in people with CFS. Some of that research involved the use of objective measures of activity (e.g. actometers), so it’s not just relevant but also significant. Likewise, there’s an interesting suggestion as to the adverse effects of the fear of symptoms, which caught my eye as the authors cite someone I worked closely with. They write that Ray et al (1995) “found that people who were fearful of symptoms were more likely to focus on them, which in turn was associated with increased fatigue, ‘giving up’, and withdrawal of effort from the illness.” I went through the paper in question but couldn’t find anything to support this statement. The researchers didn’t measure fear of symptoms. It might just be an oversight but it’s one of many peculiarities and they all point in the same direction.

The authors go on to suggest that increased attention intensifies awareness, perception and experience of symptoms, implying that attention is maladaptive. However, they don’t mention that the reference cited relates to non-cardiac pain. This is not to say that introspection is completely irrelevant to the subject of CFS but without actual evidence, we should be cautious. That’s leaving aside the matter as to whether attention and introspection etc should be discussed in a chapter on the assessment of symptoms. The same goes for the section on the role of viruses, the functioning of the hypothalamic, pituitary-adrenal (HPA) axis, the possible effect of low cortisol on non-specific immune responses, patients’ beliefs, coping behaviour, psychiatric status and illness attributions (complete with references to studies showing the association between a belief in a somatic cause and poor outcome, though of course, without reference to the alternative interpretations for the said findings or studies which did not find such an association).

What they have basically done is extend the discussion to ensure that people are aware of their views on aetiology. So it’s a review of measures for CFS, the causes of CFS and the treatments. No guesses what they recommend! It’s part of “an integrative approach”. Perhaps they thought they could not rely on Bleijenberg et al to promote CBT?

There is also the problem that the authors do not discuss the flaws of the Chalder Fatigue scale, which has a low ceiling. Perhaps that’s not surprising. Be critical of your own work?

Abbreviations

CFS: chronic fatigue syndrome

FM: fibromyalgia

CBT: cognitive behaviour therapy

GET: graded exercise therapy, aka graded activity therapy. Some regard them as different.

ME: myalgic encephalopathy. Some, like Hyde, prefer the old term, i.e. myalgic encephalomyelitis. I have no strong views on the issue. What matters is the definition. I use the one by Dr Melvin Ramsay and accept versions consistent with his description of the illness.

PVFS: post viral fatigue syndrome. My research suggests that there is no significant difference between this illness (as defined by Dr. Ho-Yen) and ME.

For footnotes and details of references, see end of review.

For a rest from the psychobabble, I turned to Renee Taylor et al’s chapter on epidemiology. It was tough going. They seemed to overlook major flaws in some studies but also the strengths in others. Thus Ho-Yen and McNamara’s survey to identify cases of post viral fatigue/ME in Scotland was dismissed as lacking rigor, yet it was perfectly sound (1991). It used a strict definition, most GPs responded and the prevalence rates match those of others. Taylor et al probably didn’t know that British patients have free access to their family doctors, so costs would not have kept them away. More rigorous, in their eyes, was the CDC study on CFS – defined differently from PVFS/ME – which unearthed a lot of high-income, white individuals. Was it more rigorous? Well, it didn’t assess the same illness. A case of apples and pears perhaps?

It wasn’t the most authoritative review I’ve ever read. Take their analysis of studies assessing prognosis. They quote Sharpe et al (1992), who followed patients up to 4 years after the initial visit. According to Taylor et al, they found that “longer illness duration, belief in a viral cause…, limiting exercise, changing or leaving employment, belonging to a self-help organisation and current emotional disorder predicted greater functional impairment”. Most readers would probably interpret this sentence as showing that a viral attribution and membership in a self-help group at time 1 predicted impairment at time 2. In other words, those variables are likely to lead to poor outcome. (Quick, send them for CBT!) The fact is that beliefs and information about self-help groups were only assessed at follow-up (Sharpe et al, p. 149). So another interpretation is that the more severely affected patients tended to join a self-help group and believed in a viral cause, possibly because that’s how their illness started. For those who speed read papers and missed it, Sharpe et al spell it out in their discussion. “The independent variables were assessed at the questionnaire follow-up, not at the initial clinic assessment, and cannot therefore be regarded as predictors of poor outcome” (p. 151). So how did Taylor et al come to miss it? I don’t know but it is potentially misleading. It is one more reason why overall, I found this a very disappointing chapter. Incidentally, Dittner and Chalder also misinterpreted the Sharpe paper, but that’s consistent with the modus operandi of the CBT school. I’d have been surprised if they hadn’t.

Audrius Plioplys covers differential diagnosis and this isn’t too bad. However, I’m not sure that making a diagnosis of CFS in children is quite as unhelpful as he maintains, but he’s entitled to his opinion.

The next chapter deals with trauma, a much overused term nowadays. Patricia Fennell makes some important points, notably about the effect of stigmatisation and sceptical doctors but as editor, she included several chapters which did not exactly help the situation.

I felt it was rather undisciplined, and ventured too close to New Age waffle. There’s an awful lot of speculation and few hard facts. Thus Fennell links society’s tendency to blame patients with CFS for their own situation on the their “intolerance of ambiguity”. I think though that psychologisation by the CBT school also played a part. After all, there is evidence for organic causes in a subset. In the eighties, the debate was fairly constructive. But if a book like this doesn’t give a fair overview of that evidence, is it any wonder people are so unsure? Attitudes form, partly, as a result of information. Where are people supposed to get this from, if a book like this is skewed towards the psychological? Alas, she doesn’t consider the role of political editorial policies.

There are sweeping generalisations, for example, about doctors not being able to cope with chronic illnesses and the public perceiving the chronically ill as damaged goods, but I think she misses important issues. And her reality is not mine.

I don’t know enough about genetics to evaluate Patrick Sullivan’s chapter, but I was uncomfortable with the way he switched from CFS and fatigue, as though data from the latter can be generalised to the former. I’d have preferred separate sections.

The next chapter is a discussion on post-infective fatigue by Andrew Lloyd. Some of his previous articles have shown a certain sympathy for the CBT model so would he mention the work on the possible mutation of enteroviruses by Cunningham et al (1990)? No! How about the evidence of infection in the cerebrospinal fluid (Innes 1970), and the brain (McGarry et al 1994)? No! The latest research on Q fever? Yes, that’s there! But would he note that Wessely et al’s study into post infectious fatigue (1995) included only 6 or so people with new onset, i.e. true post viral fatigue. Alas, no! (A lot of people were fatigued and distressed, had a cold/sore throat/flu, and as a result of that, were classed as being ‘post-infection’. For some reason, many remained fatigued. As Lloyd points out, Wessely et al found a stronger association between pre-existing psychological distress and chronic fatigue than between infection and fatigue. Yes, but given the number with pre-existing fatigue in the post-infection group, was this a study into pure, post-infectious fatigue?) Nevertheless, it’s a reasonable review and it leads nicely into the chapter by Kevin Maher et al on immune activation, cytokines and other immunological factors. This seems very balanced, discussing the limitations of the research and for instance, citing both studies supporting and not supporting the involvement of certain variables. I can’t assess its accuracy – for that you need an immunologist – but I did recognise a lot of the studies mentioned. And the few facts I do know matched the information in the chapter.

Part 2 of the book begins with a discussion about the four phases model by Patricia Fennell. Some of it could have been written ten years ago. For instance, she posits that many women may be diagnosed with depression. Yes, but I think that’s changing, to somatisation and functional somatic syndrome. Still, this is nitpicking. It’s food for thought and will interest many psychologists and therapists. A separate chapter covers Fennell’s views on treatment based on the model. There are some interesting ideas but the multidisciplinary approach she describes won’t come cheap.

Kat Duff’s insightful observations about the experience of CFS contrast with some of the political accounts of the illness offered by the academics. She gives valuable information about the effects of moderate and severe CFS and offers persuasive arguments against those who see vigilance as entirely negative!

Another person who seems to understand this illness is Barbara Melamed, who writes on the effects of CFS on partners and family. It’s concise and authoritative: health psychology at its best! I also enjoyed reading Jon Sterling’s essay on patient groups. Again, this is down-to-earth information, which helps to balance some of the propaganda one reads elsewhere. But it’s a little one-sided and he should have acknowledged that not all groups offer reliable medical information. Critics such as Barsky and Borus (1999) just exaggerate the problem.

The section on specific symptoms starts with a discussion on fatigue and pain by Dennis Turk and Beatrice Ellis. They cover both CFS and FM and all was fine until I read about avoidance and deconditioning. I’m very sorry, but this is what I call ‘gossip-based medicine’. Until someone provides us with evidence of deconditioning in the majority of patients, this is just a repetition of a theory/assumption. They’ve had time enough to collect data and all we have is evidence that it’s a possible problem in a minority, and anyway, it’s not linked to CFS. Can’t we deal with this topic in a more factual way?

There’s also a section on depression (to connect CFS and FM) followed by more gossip (the vicious circle of increasing avoidance and fatigue). It’s amazing to me that none of the people who’ve read the CBT model have noticed that CFS is generally not progressive. If there’s no progressive illness, no increasing fatigue, why keep pretending there is? (In the majority!) And how does lack of fitness explain other symptoms, such as intolerance of alcohol? Back to the chapter, and the authors refer to avoidance in anticipation of post-exertional malaise. Well, in ME, that can occur five days after the exertion. And you can never be sure. Avoidance in anticipation would mean that no patient ever gets out of bed. There would be universal muscle wastage – which there isn’t – but no symptoms, as in ME they are usually exertion-related. There would be one, very happy, though horizontal group of patients. Which there isn’t. I suppose someone had to cover the influence of faulty perception, so why not here? And just in case you are likely to miss it, there’s another hint about the possible influence of somatic attributions on outcome. [Editor’s note: Some cases of the disease are progressive, and as M.E. specialist Dr. Betty Dowsett described, can lead to end-stage terminal complications. The progression of the disease, however, is not due to inactivity, but may be caused by pushing beyond one’s limits – i.e. by too much activity. There is increasing inactivity, but it is the result of the illness and not the cause.]

The chapter ends: “a common feature of both CFS and fibromyalgia is physical deconditioning”. There’s no reference but they recommend CBT and exercise. Then there’s another reference to the ‘downward spiral of deconditioning and disability’ for those who haven’t got the message yet, but amidst the myths, they refer to pacing. My eyes lit up. Alas, it’s not my version. This is pacing with a clock in order to get a baseline, so one can gradually increase activity levels, irrespective of symptoms. The rest of us call that graded activity. This is followed by a note on dysfunctional thoughts. (It’s a pity no one wrote a chapter on dysfunctional thinking among medical practitioners. After a third of the book, I’ve come across obsessions, denial, generalisation, speculation, and conjecture. I know some patients have unhelpful beliefs but hey, so do some doctors.) To their credit, they do acknowledge that different patients may need different approaches and that one size does not fit all. Indeed! Actually, we knew that ten years ago. Perhaps leaders in their field (cf. preface) should stick to writing what they know about. In this case, that wasn’t CFS.

At least Julian Stewart knows about orthostatic intolerance and what’s more, sticks to his subject. I was about to pay Joan Shaver the same compliment, until I read that CFS “has been conceptualised on a spectrum of stress-related disorders characterized by profound fatigue…. that also includes irritable bowel syndrome and irritable bladder…”. And this in a chapter on sleep disorders. Yes, but others see it quite differently! I wonder if there wasn’t a more evidence-based way of introducing a section on the relationship between stress and sleep. It makes one appreciate those experts who can think outside the box!

Martin Lerner and colleagues are more focused. They discuss cardiac and virological issues, though the latter is limited to the role of Epstein-Barr virus and cytomegalovirus (CMV). One may not agree with everything they write, but this is traditional science. A discussion of findings and observations without wild speculation and politics. With details of recent research e.g. on cardiac biopsies, which were not terribly revealing, and the promising effects of anti-viral treatment. And there’s some evidence for subgrouping, and the ‘super-infection’ theory, implicating two viruses. A pity they did not cover the possible role of stress and inactivity on the documented abnormalities for members of the CBT school. (Editor’s note: In their other articles, Lerner et al. do cover the problems associated with exercise. They advise against exercise, arguing that it causes disease progression and worsens cardiac function. New research by Peckerman, Natleson et al., available on this Web site, further backs up these claims.)

The next chapter is by Anthony Cleare, a member of that school, but not a fundamentalist. He covers some of the neuroendocrine abnormalities documented in CFS and he’s fair to the literature. As he often is. There’s also information from unpublished research, notably the effects of CBT on abnormalities previously recorded in the HPA axis - which makes sense if one regards most of these endocrinological changes as a result of chronic stress. And although he mentions that inactivity may impinge on the HPA axis, he doesn’t go beyond the evidence. This is a well-researched and balanced review, clearly-written and up-to-date.

I was impressed!

The next part of the book deals with assessment. It has the chapter by Dittner and Chalder on measuring symptoms and severity and more (see above) which is followed by Fred Friedberg’s review of diagnostic interviews and self-rating scales. Friedberg’s chapter is no-nonsense, evidence-based and to the point. It also duplicates some of the information provided by Dittner and Chalder, who overextended themselves. It’s poor editing. Friedberg should have been allowed to cover symptoms as well as other rating scales. He would have been much more objective.

Fortunately for us, Dittner and Chalder did not go into detail about measuring exercise capacity, cardiorespiratory fitness and muscle endurance. They left that to Kevin McCully, who discusses some of the research which makes uncomfortable reading for the CBT school. The message here is that the studies are inconsistent, for all sorts of reasons. Yes, some researchers have found abnormalities, including reduced muscle strength which persists for at least 24 hours after exertion ends (e.g. Paul et al 1999). However, McCully underinterprets, and doesn’t note that this is objective evidence supporting the phenomenon of post-exertional fatigue. Nor does he assess if more abnormalities were found in strictly-defined samples (e.g. Paul et al, who studied patients with ME versus Stokes et al 1988 who studied people with ‘effort syndromes’). On the other hand, he does acknowledge the research showing that fitness levels are similar to those of patients with other diseases (De Becker et al 2000).

In my view, the latter undermines the theory that CFS is a result of a lack of fitness. McCully is not convinced, because those groups have other medical problems. But isn’t that the point? Lots of problems but no CFS. If deconditioning doesn’t play a major role in those diseases, why should a lack of fitness explain CFS? Perhaps if the fitness scores had been worse in the CFS group, but they weren’t. Still, he does cite the paper by Bazelmans et al (2001), which concluded that lack of fitness could not explain levels of fatigue in CFS in their patients.

It’s a complex area and there are lots of potential confounders. But this chapter was not quite what I’d hoped for. It’s high time for an intelligent, in depth debate on deconditioning. Otherwise, many will continue to advocate exercise regimes, on the basis of what is essentially another assumption (cf. Turk, Chalder etc). If it’s not covered in a review dealing with muscle function and fitness, then where will it be dealt with?

The last chapter in this section is devoted to neurocognitive assessment. John deLuca is an expert and generally very objective. Imagine my surprise when I read that studies of patients with ME and PVFS had apparently shown a relationship between cognitive abnormalities and psychopathology. I looked up Smith (1991) which he and Lana Tiersky cite. Professor Smith studied members of the Sussex ME Association and others, some of whom had evidence of enteroviral infection. The relationship between ‘cognitive failures’ and neuroticism was just one finding, from a questionnaire, and almost certainly relates to the items in the neuroticism section which asks about symptoms. Like the presence of fatigue. This is why we rarely use measures of neuroticism. They tend to give false positives. When it came to standard memory and attention tests, there were significant differences between the patients and controls. Smith concluded that “there was clear evidence of slower motor performance, visual sensitivity, impairments on attention tasks and various memory deficits”. In other words, these patients not only reported problems with cognition, but there was good evidence to support those reports. In one section, he refers to the results reflecting muscle damage; in another, he relates how the data “resembles results obtained with Korsakoff patients who have mamillary body damage”. If you read Smith’s chapter, you would have noticed that! I talked to Professor Smith about his findings. He thought they reflected organic disease, not psychopathology! To link them to neuroticism is to misrepresent his work.

I then checked the other paper cited. According to DeLuca and Tierksy, Ray et al (1993) found a correlation between self-reported cognitive problems and emotional distress, fatigue and malaise. Yes, because cognitive difficulty is one of the subscales of the Profile of Fatigue-Related Symptoms (PFRS) and all the four subscales correlate with one another. Cognitive difficulties are part of the illness ME. Like fatigue. Like somatic symptoms. And surprisingly, most patients aren’t happy to be ill. Ray et al also found that somatic symptoms correlated both with word and colour naming times, and with Stroop test interference and performance. The latter are objective measures. The researchers interpreted the findings relating to cognitive difficulties, emotional distress, fatigue and malaise as suggesting “the presence of a general factor of perceived disability”. Were the authors fair to their colleagues? I don’t think so.

Most of the other studies cited by DeLuca and Tiersky which showed little relationship between subjective complaints and objective measures assessed more broadly-defined fatigue syndromes. Incidentally, the alleged poor correlation between complaints and objective evidence is part of the CBT model. It supports the notion of faulty perception and all that!

The authors also refer to Riccio et al (1992) who found no abnormalities on psychomotor performance. This is true. But their (ME) patients did have significantly reduced immediate logical memory scores. Six of the patients had evidence of an enteroviral infection and four of them were the poorest scorers on the logical memory test. And their neuroticism scores were normal! What Riccio and others have shown is that the abnormalities in people with ME tend to be specific, not across the board. Like the muscle fatigue. In ME, not every muscle is affected. So, if you do not test the weight bearing muscles, you are likely to get normal results. It’s the same with cognitive performance. But definition is everything. Broadly-defined CFS patients tend to have fewer abnormalities and they are rarely significant. I think this issue deserved a paragraph.

The chapter does include a good section on the differences between patients with CFS and depression, plus two paragraphs on neuroimaging. Unfortunately, this is followed by a generalisation about “well-designed clinical trials” showing CBT being effective in improving symptoms. Does it? We have data for fatigue, anxiety and depression. I wasn’t aware of trials which found it helped somatic symptoms. Or for that matter, cognitive impairments. They cite Prins et al (2001). Yes, that was particularly well-designed. Starting with that home-made set of criteria. It does make you wonder if contributors are getting a commission for plugging CBT.

Part 5 of the book deals with treatments. It begins with a review of medical interventions by Paul Levine and colleagues. Being the sole chapter devoted to medical interventions, would they mention CBT? Yes, they do. Suggest there is deconditioning? Yes, they do! (At this stage, I looked through the preface again, to see if the book was being sponsored by an insurance company. Or PRISMA*. It didn’t say.) I’m not into conspiracy theories, but my CBT model predicts that adherents will discourage antiviral treatments such as those advocated by Lerner. Which is exactly what this chapter does. It also predicts little attention for somatic symptoms such as nausea, balance problems, bladder disturbances etc because in the CBT model, such symptoms don’t exist. Except as a result of stress and the ‘d’ word. There’s nothing. Just antidepressants and a short section on cognitive difficulties, sleep problems and pain. Compare this account with Shepherd and Chaudhuri’s recent booklet for the ME Association. They are also cautious about antiviral medication, but they mention muscle relaxants for those with spasms, vestibular sedatives for those with vertigo etc, they discuss pacing and treatments for irritable bowel symptoms. And of course, CBT. Now, that’s what I call balance! The authors claim to have obtained the information largely from meetings. Perhaps they had their lunch when practitioners noted the drawbacks of CBT and GET.

This chapter is followed by those on phase-based interventions and CBT, which I’ve already covered. Also in this section is a review of stress and immunity by Michael Antoni and Donna Weiss, which seems somewhat out of place until you find the section on their own version of the CBT model and their preferred treatment. Like the Wessely/Sharpe version, this model focuses on variables for the maintenance and/or exacerbation of CFS. But unlike the English counterpart, it acknowledges there may be immune dysfunction. There’s some duplication of information on immunological findings, in case you missed the chapter on immunology earlier on. And if you’re getting withdrawal symptoms, they also found space to discuss of the effectiveness of CBT.

Given this chapter is on stress and immunity, I wondered if there is any evidence that CBT improves the symptoms of those with immune system abnormalities? No. Because it hasn’t been tested. Not in CFS. Apparently, there are minor changes in patients with HIV. Not perhaps relevant to CFS – I think I read that the subjects were asymptomatic -- but as a scientist, one would like to know if it made a major difference. Apparently, there was a reduction in distress. I presume, this was related to the diagnosis, but there are no details. Is it more effective than normal counselling? Again, no details.

They also cover their own management programme, which is not unlike the one tested by Friedberg and Krupp (1994). I’m sorry, but without data on its effectiveness, this is not terribly interesting. Maybe Louise Hay has a programme for CFS as well? And the clinic next door. Why waste trees on descriptions, if you have no data to show it actually helps. Also baffling is a section on relaxation, though the one study which assessed that in CFS found it wasn’t useful. Mind you, a programme including coping skills training and relaxation increased NK cell counts in early-stage melanoma. So does reducing stress this way modify immune function and improve symptoms? Maybe! Unfortunately, the authors do not inform us if it made anyone feel better or if it cured the melanoma. So we have a model which hasn’t been tested, and a programme, also untested, or at least, not yet completed. In a very long book, this type of speculation and generalisation from one disorder to another is a luxury we could probably do without!

In the next chapter, there is more information on their programme. It’s called the SMART energy intervention, where SMART stands for Stress Management and Relaxation Training. ‘What!’, I hear you cry. No CBT? Don’t worry. That starts in session 2. It should be emphasized that this group-based programme is focused on improving the adjustment to CFS. In that sense, I’m sure learning coping skills and the social support from the group will be found to be helpful. But what if you already have social support? What if you already possess good coping skills? What if you don’t have low self-esteem and cognitive distortions? They sell it as a ‘total wellness program’ but they don’t mention any medical care. As with CBT, we’re still just trying to deal with the psycho-social complications of CFS. It’s a very limited approach. And it did not deserve a separate chapter.

I moved on to Christopher Snell’s account of his ‘exercise therapy’ – for the deconditioned muscles which most of these patients probably don’t have. Snell reviews some of the evidence of disease, including abnormalities in the mitochondria and the RNase L pathway. He then forgets about this to discuss his views on exercise. Well, graded exercise was helpful for the high-functioning patient, so here is a programme to help those at home. He advocates gentle stretches and strengthening exercises e.g. sitting on a chair and then standing up. Another suggestion involves a resistence band. I’m sure it will help to reduce and prevent deconditioning! But what will it do for the flu-like malaise, dizziness, blurred vision and intolerance to alcohol? Your guess is as good as mine as the author provided no data. Not even about the effect on fatigue.

There is a lot on exercise for a patient population which has problems with, erm, exercise. What’s the aim? If they can’t tolerate exercise, let’s make them more tolerant**? But the problems with exercise are a result of the illness. Not the cause. It’s not like a simple headache. Take an analgesic, remove the pain and the problem is solved. CFS is more complicated than that. Why are none of these therapists thinking outside the paradigm of deconditioning, stress and fatigue? Why this assumption that if the lab tests are inconsistent, they are probably irrelevant? They are not seeing the whole illness, let alone the whole person. Most are focusing their attention on one or two aspects of this illness. I think you know which ones I mean. Remember the patients and their alleged ‘misguided’ beliefs’ and cognitive distortions? Well, what do we call this phenomenon of rigid thinking amongst therapists? Where fatigue is equivalent to CFS. Where health professionals can’t cope with complexity?

I thought the most useful approach to energy management was pacing. Why didn’t it deserve a chapter? Perhaps I should have given it a new name (I was the first to use the term in relation to ME and CFS). Intelligent energy management perhaps? Pacing is part of a broader programme used by many ME specialists. Based on approaches offered to people with cancer and MS, it also comprises information, dietary advice, symptomatic treatment, support and counselling as required. It helped 80% of patients with ME/PVFS in a controlled trial. And that includes those with somatic symptoms. This information is in the public domain, and listed in a review of best evidence which was cited by several authors (Whiting et al 2001). In short, this is a programme, based on a theory for which there is supportive evidence, and which has been tested in a properly-conducted study within a clinical setting. (Not a research clinic). Instead of giving space to this, we have several chapters on essentially improving coping and adjustment. And preventing deconditioning and stress-induced immune dysfunction.

I hadn’t heard of Richard Van Konynenburg, and can’t judge the accuracy of the biochemistry. However, I recognised a lot of the literature he cites and his descriptions of the studies match my recollections. Pretty much everything relevant to the subject is here. What’s more, he’s added useful information such as the criteria used to select the subjects. This review is what one hopes for. Comprehensive and evidence-based, with an expert’s opinion for those who appreciate that. He’s also one of the few contributors who notes the importance of differentiating subgroups and one of the few to discuss symptoms such as gastric disturbances. There’s an interesting section on Candida, and he agrees with some of the experts whom I know that many benefit from a high protein, lowish carbohydrate diet. It’s a wonderful resource on vitamin deficiencies and supplements. I would say that this is probably the best chapter in the book.

After that, I was treated to an account of the type of psychological intervention which I recommend for most patients with CFS: rehabilitative counselling. In short, this approach is directed towards helping the patient cope with the difficulties of their disability. There’s no half-baked theory about perpetuating factors, no notion of irrational ideas underlying the fatigue or mass somatisation.. It’s goal-directed, pragmatic, and respectful. I suspect that if anyone ever gets funds to evaluate this properly, they’ll find it to be significantly more helpful than CBT. My only reservation about Donald Uslan’s review is his concept of pacing. The first time he refers to it, he describes what I’d call ‘graduated increases in activity’. The second time, he describes activity within one’s limits. In my view, only the second one is true pacing. (We have enough ambiguous terms already. Let’s not add to them). On the other hand, Uslan is the only contributor to this book, if my memory serves me right, to mention neurontin. This guy is on the ball!

There’s also a section on advocacy, but then things go awry. Other contributors write on biofeedback, which is not out of place in a rehab programme, but this is followed by a page or so on sleep disorders. Is that logical? From symptoms, we return to considering other potentially useful interventions, like acupuncture and occupational and physical therapy. It’s like someone felt the book needed to cover these subjects and just tagged it on the end of the last chapter. One minute there are references to CFS, then to FM. I’m sorry but this just didn’t work for me.

The final part of the book includes two chapters on children by Bryan Carter and colleagues, which came across as rather unfocused and uncritical. And that’s putting it mildly. Do they mention CBT? What do you think? The authors may be leaders in their field, but it wasn’t clear to me what that field was. Come back David Bell. We miss you!

To end the book, there is a review by Leonard Jason and Renee Taylor of community-based interventions. More specifically, it’s about their ‘ecological approach’ to CFS, their research (which recently won the Dutch ME-Fonds prize), the envelope theory, a sympathetic collaborative ‘self-help’ programme set up with the local support group, and their ideas on what else can be done to improve the lives of patients. Like multidisciplinary centres (with a hotline referral service), special housing, centres for independent living and so on. It was all very uplifting but then I read that Jason has recently been offered a grant to study the effectiveness of you know what. That’s just what we need, I thought to myself. Another study on CBT! Can’t anyone think of anything more original?

(To be fair, it’s a comparison with coping skills training and pacing, plus graded activity and relaxation, but we’re still just dealing with a small part of the illness. We need to add a medical care component, supportive counselling and a nutritional assessment to go with the pacing etc. So patients get what they need. Combining coping skills training and activity pacing isn’t enough, except for the milder and uncomplicated cases. Cancer patients are treated according to what they need. Researchers don’t test a new drug and deny patients surgery, if that’s appropriate. What will happen to the CFS patients in the new trial if they have vertigo, if they need antidepressants, pain relief and so on? These should be part of the basic programme, not confounders complicating the statistical analysis.)

There’s also a little denial. The authors discuss the negative attitudes to the illness, and blame the media. Well, are they surprised, if textbooks spend a disproportionate amount of space promoting the view that patients are afraid of fatigue, and have irrational ideas? The authors were also the editors. They are helping to perpetuate those attitudes. It’s not just the media’s fault. Not anymore.

Conclusions.

Of all the books on CFS, this one is the greatest disappointment. It angered more than inspired. And I detest the dishonesty in some of the chapters. You’ve heard of heart-sink patients? Well, for me, this was a heart-sink book.

Eleven of the 31 chapters were worthwhile, but as a whole, it did not do what I hoped it would. There was little which was new or original, or which you could not find somewhere else. It’s interesting to read about novel therapies but without supportive evidence that it works, does it merit paying $90? For an orthodox scientist, there was too much gossip, speculation and conjecture. Too much generalisation and politics. I want to have both sides of the argument and in the case of CBT and exercise, which are not exactly minor issues, I didn’t get it. And there wasn’t enough on the confusion caused by the name or about the heterogeneity of the population and what that means. It was all very 1995.

I saw the modus operandi of the CBT model just about everywhere. They don’t like references to immune dysfunction or persistent viral infections, and there’s comparatively little of that. And they never mention Innes (1970) or McGarry et al (1994), possibly because their findings are rather hard to explain in terms of stress or lack of fitness. Could the documented inconsistent results reflect the heterogeneity of the CFS population? The inclusion of patients with burn-out and somatisation? Maybe, but it rarely gets more than a sentence here and there. Then there’s the missing information on neurology. In short, there is very little to distract the reader away from the idea that CFS is largely perpetuated and exacerbated by stress, deconditioning and misguided beliefs.

The CBT model may be full of holes, but you’d hardly know it from this book. Talk about avoidance behaviour! Admittedly, Jason and Taylor mention a few problems but it’s not enough. No one noticed that the successful trials of CBT/GET only assessed tiredness and emotional distress. And no one noticed the lack of evidence that it actually increases activity levels in the majority. Why is this a problem? Because it means that we continue to make decisions on the basis of incomplete information and assumptions. Would that be good enough in neurology? Oncology? Gynaecology?

I’m not saying that the book should not have included a chapter or two on CBT. CBT has a role in CFS and should be offered to those who require it. The point is, most of the contributors, even those discussing other topics, implied that it’s appropriate for everyone, in some form. But this is going well beyond the evidence. It reminded me of some of the ‘enthusiastic’ claims made by complementary therapists. And there was a sort of drip, drip, drip effect. All those sentences including the words ‘cognitive’, ‘behavioural’, ‘beneficial’ and ‘effective’. You saw them here, you saw them there, you saw them just about everywhere. They were like a fils rouge throughout the book. Hence my comments about the ‘promotion’ of CBT.

With respect to psychological issues in general, I missed the objectivity and the precision of good science. The chapters by Melamed, Friedberg, Uslan and Jason and Taylor were notable exceptions. But overall, there was a lack of balance. Too much attention on too limited an area.

Prof. Jason has a track record I envy. Years of elegant and solid research, with sharp analyses and impressive insights. He has his flaws, who doesn’t, but of all the American researchers into CFS, he and Prof Friedberg stand out. But this book saddened me. It read like a party political broadcast, not a scientific text. We are talking serious psychologisation. I expected it from certain psychiatrists. I did not expect it from this team.

There are good reviews in this book, but all things considered, I cannot really recommend it. Indeed, we should think about whether we should reinforce this overpoliticised approach to science. We have a choice. If you want to read the better chapters, why not get the library to buy the book and share it? To paraphrase someone else, I read the nonsense, so you don’t have to!

Footnote: As someone who has co-edited a textbook (Functional Disorders of the Menstrual Cycle. Wiley & Sons, 1988), I am well aware of the massive amount of work involved. However, I was asked for an honest opinion, and I think people deserve one. It wasn’t easy and certainly not pleasant; after all, I knew and admired Prof. Jason. I also know what happens to people who challenge the CBT model in public (see for example reference 3). Others will have a different opinion. I’m offering my view, so you can compare and contrast, then make up your own mind. I was not paid for this review and there are no conflicts of interests.

[Ellen Goudsmit is a Chartered Health Psychologist and psychophysiologist, originally from the Netherlands. Her doctorate focused on the psychological and social effects of ME, and included details of a controlled trial assessing Dr Ho-Yen’s management programme. This has not been published since most peer-review journals currently do not accept papers on this illness. She has written articles on the psychological aspects of ME and CFS for lay and professional publications and her letters challenging the CBT model and psychologisation of CFS have been published in journals including the BMJ, Lancet, JAMA and the Annals of Internal Medicine. She currently works as an archivist specialising in the literature on ME and CFS.]

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* PRISMA is a German-Dutch company which offers courses of CBT/GET in the patient’s own home.

** ME is defined in terms of exertion. It’s symptoms brought on by amounts of exertion which were previously tolerated. If you can keep on increasing your activity levels without leading to an exacerbation of symptoms, you cannot have ME. At some stage, patients with ME will reach a plateau above which they cannot go. If graded activity works, if you can gradually increase your activity levels until you can function reasonably well, you don’t have ME, or are well on the way to recovery. I thought it was the same for CFS, but apparently not. To put it another way, the solution to ME is not increasing activity levels, except to find your plateau. Your limits.

Abbreviations

CFS: chronic fatigue syndrome

FM: fibromyalgia

CBT: cognitive behaviour therapy

GET: graded exercise therapy, aka graded activity therapy. Some regard them as different.

PVFS: post viral fatigue syndrome. My research suggests that there is no significant difference between this illness (as defined by Dr. Ho-Yen) and ME.

References

1. Van Essen, M and de Winter, LJM. Cognitieve gedragstherapie by het vermoeidheidssyndroom (cognitive behaviour therapy for chronic fatigue syndrome). Report from the College voor Zorgverzekeringen. Amstelveen: Holland. June 27th, 2002. Bijlage B. Table 2. p. 57.

2. Friedberg, F. Does graded activity increase activity? A case of CFS. Journal of Behavior Therapy and Experimental Psychiatry, 2002, 33, 203-215.

3. Stanley IM et al. Reply to Goudsmit, E. Chronic fatigue syndrome. British Journal of General Practice, 2002, 52, 763-4. See also ibid, 52, 12, 1023-1024.

All other references can be found on http://freespace.virgin.net/david.axford/me/me.htm. Just use the search engine.

Page last updated: August 24, 2003