This is a book directed at patients and self-help groups, based on a conference organised jointly by the Novartis Foundation and the Linbury Trust. For the uninitiated, the Novartis Trust has a long history of hostility towards patients with CFS, which is why it virtually never invites any ME specialists or researchers from outside the CBT school to any of its conferences. They certainly didn’t this time. The Linbury Trust is a Sainsbury charity, which is not overtly hostile, but just has a strong ‘preference’ for research and other activities supporting the CBT explanation. (Most of their grants are for studies using the Oxford criteria, which in practice, exclude most people with ME. It also funded a booklet on exercises written by a patient of a psychiatrist from the CBT school. However, it refused three applications from scientists outside the CBT school, who wanted to compile updates featuring balanced and reliable medical information on CFS.) The background and motives are important as they explain why most of the discussion at this conference focused on issues like altered perception of effort, maladaptive self-monitoring, disordered attention, depression etc), why no one was interested in symptoms other than fatigue, lethargy, tiredness, pain and fragmented sleep*, why the title refers to chronic fatigue (as opposed to CFS) or why no one had the knowledge or interest to correct misconceptions or errors relating to the research.
I could summarise each chapter in detail but this
book isn’t worth it. Let’s just say that I learnt nothing new, that little
made much sense given what I know of the illness and the literature, and that
most of it came across as self-indulgent, amateurish psychobbable which assumed
that this is largely a psychological illness. It’s well-written as one would expect from Simon Wessely, but I
constantly felt a sense of being manipulated and patronised. A voice kept saying
‘ we know you say there is more to CFS than fatigue, worry, aches and pains,
but trust us, it’s not. It’s the way you think about those symptoms. You
cannot trust your intuition. You have no insight. And forget all this nonsense
from Lane et al, Behan et al or Paul et al suggesting there’s something wrong
with your muscles. Let’s just focus on fatigue and forget the nausea, blurred
vision or balance problems. That’s just a result of misperception, or stress.
We’ll tell you what might really be happening.’ No, this book doesn’t
cover the CFS I know, and it only focuses on a small amount of the research.
There’s more speculation than fact, and no acknowledgement of the existence of subgroups, or evidence of immune dysfunction etc. The standard of debate can be summed up with two quotes. One contributor thought the ‘catch 22’ of CFS is “which came first, the syndrome or the fatigue”? (The rest of us know the answer to that). Or how about the suggestion from a psychologist that if attentional systems are not used, “the feeling of lethargy might perpetuate itself, turning acute tiredness into chronic fatigue”. (Had anyone from outside the CBT school been there, they would have noted that broadly defined patients do not show marked cognitive deficits so if attentional inactivity doesn’t impact significantly on thinking, why should it cause disabling fatigue? The deficits found in ME and strictly-defined CFS are specific, related to immune function and have a tendency to fluctuate, none of which can be explained in terms of ongoing attentional inactivity as in this case, deficits should be global and stable. Perhaps I’ve missed something? Perhaps someone there did mention the flaws in the argument but the editors felt that patients didn’t need to know). Anyway, you get the idea.
Research has totally disproven the CBT theory. Some aspects apply to a minority of patients or in the case of ME, to an extremely small minority. One therefore has to ask why the Linbury Trust continue to be so fond of it. Admittedly, attributing CFS to unhelpful thoughts and behaviours means the government hasn’t got to fund research into viruses, and patients cannot claim high rate mobility allowance. It’s cheap and cheerful. But what’s in it for Sainsbury? What’s in it for Novartis? Why support the work of those who are essentially trying to find reasons to blame the victims? This book is about patients who don’t think sensibly, who pay attention to the wrong cues, who misattribute symptoms or rest at the wrong times. Raised levels of antibodies to HHV-6? Abnormal immune functioning? Abnormalities on brain scans consistent with infection?
No, these doctors think that the fatigue may result from a malfunction in the self-monitoring pathway, leading to misperception and problems assessing effort. Or there may be an “exaggerated self-awareness of every physical feeling and complaint, to the point where symptoms become distorted”**. And there is that old favourite of the CBT school: depression (biochemically different but like CFS, often responds to CBT, allegedly).
Some of the ideas about possible changes in circadian rhythms are interesting but again, based primarily on speculation. Then there’s more on effortfulness, which refers again to misinterpretation and being tired.
In my view, there’s nothing wrong with discussing any of these topics, if they had balanced it with an assessment of somatic aspects. However, the obsession with these psychological concepts gives a misleading view of the research. The blurb on the back refers to this “symptom-led approach” as “unconventional”. I’d say that this is not what serious scientists should be doing, or in fact, what they are doing. You cannot take a symptom like fatigue out of context. It’s like claiming to study migraine but discussing only normal headaches, with no consideration of the nausea, visual disturbances, severity etc. This is not unconventional. This is poor science.
Of course, the Oxford criteria select a lot of people whose main problems are normal fatigue, emotional distress and pain and there are thousands of people in the UK whose CFS can be ascribed to somatoform disorders and phobic avoidance. I suspect that this book is aimed at them. I’m sure they will appreciate knowing that they experience a greater sense of effort required to achieve goals, partly because something has gone wrong in the anterior cingulate gyrus. (Before you ask, it’s pure speculation, as is the suggestion that this part of the brain can return to normal functioning after cognitive therapy. I suspect they mentioned which areas of the brain might be involved to make the readers feel less culpable: they can blame the brain rather than just unhelpful beliefs. The doctors were not claiming that parts of the brain are diseased but they hope you won’t notice).
There are also brain scans showing activation in the cerebellum produced after tactile stimuli. In normal people. And there’s a lovely diagram showing that disengagement coping is weakly related to chronic fatigue in shift workers. Of course, the only way to find out the causes of CFS is to study people with CFS. And the best way of finding out where to look is to listen to the patients, to see what others have done before (in CFS) and to measure all relevant variables, not just fatigue and signs of emotional distress. As I’ve noted many times, if a theory cannot explain the intolerance to alcohol, it’s on the wrong track.
In a nutshell, this book focuses on new research ideas but only from the perspective of the CBT school. The references to tiredness are tedious and insulting and as a scientist, I find the dismissal of ‘new research ideas’ relating to the immunology and virology totally offensive. (Can you imagine a group of doctors coming together to discuss new research in colon cancer and totally ignoring studies on diet, age and genetics?) As a Health Psychologist, there was very little from the vast literature on how patients interpret symptoms and most of all, very little respect. No one writes about the medically ill like this. I’m sorry to be so negative but I’ve seen this type of publication far too often! It misrepresents the illness, the range of opinions and the evidence of disease. It’s really anti-science and it makes me so sad.
If you have ME or infection-related CFS, you will probably find it irritating, insulting, and a total waste of money. If you are intelligent, you will spend a lot of time thinking that the ideas discussed here don’t make a lot of sense. Misperception of effort does not explain why the fatigue is often delayed, and why it tends to worsen over 24 hours after any effort has finished. If introspection leads to the exaggeration and distortion of symptoms, why does the illness fluctuate and often improve on its own?
Genuinely caring and sympathetic doctors would not have arranged this type of conference, let alone written it up for patients. They would not have thought that patients would spend money in order to read how they misinterpret their symptoms and make themselves worse.
So why was it published? As they say on Oprah, we teach others how to treat us. This book reflects the benign attitude of patients and particularly, UK based patient organisations, towards the medical arrogance, misrepresentation and complete lack of respect for them and the rules of science. The AIDS Charities didn’t give in to bias and prejudice in the early eighties. They fought every step of the way. In terms of CFS, patient groups have tried rational discussion and behind-the-scenes diplomacy and it clearly hasn’t worked. So, why not write to those who claim to represent you and persuade them to adopt a different strategy? Why not write a short, courteous letter to the Linbury Trust or the Royal Society of Medicine (who published this).
Silence is complicity. If those involved do not realise the harm caused by the dissemination of such one-sided information (cf. Hippocratic Oath), they will not change. So act now, or expect more psychobabble and research funds going to study altered self-awareness and belief-systems.
*The blurb on the back maintains that the conference looked at new ideas on each of the common symptoms of CFS. I think ‘each’ should have been ‘some’.
** The blurb also states that the book will show that the doctors involved take CFS “very seriously indeed”. I think that should have read that they take the trivialising and psychologising of CFS very seriously. If you cared about the feelings of your CFS patients, would you continue to use terms like tiredness and lethargy when what disables them is total exhaustion? Would you imply and suggest exaggeration, when there’s no decent evidence? Would you ignore masses of evidence indicating a more complex aetiology?
Copyright EM. Goudsmit 2001.
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