Is CFS a functional somatic syndrome?By Dr. Ellen Goudsmit, Editor of the ME and CFS Medical Update (UK) and Drs. Trudie Doorduin, Science Editor, MEdium, ME Foundation, Holland.
IntroductionIt’s the latest ‘big thing’ in medicine. After several years in psychiatric obscurity, functional somatic syndromes (FSS) have made it into widely read and prestigious journals such as the Lancet and the Annals of Internal Medicine. There’s a new book on FSS due out any day. More articles are being published and there will be a conference in the summer. If you’re interested in new developments involving CFS, here’s what you should know about FSS. Firstly, what are FSS? According to Dr. Peter Manu, an American internist who edited a recent book on the subject, the various FSS share “multiple somatic symptoms”; they lack “defining structural defects or laboratory abnormalities”; there’s a “frequent association with psychiatric disorders”; an “absence of proven pathophysiological mechanisms” and “a paucity of effective therapeutic interventions”. Aside from CFS, the term covers fibromyalgia, premenstrual syndrome (PMS), multiple chemical sensitivities (MCS), irritable bowel syndrome (IBS), non-cardiac chest pain, hyperventilation and tension headaches. It has been claimed that keeping these disorders separate makes life unnecessarily complex, and that it’s of little clinical value. It has also been suggested that it undermines our understanding of the illnesses and that it makes the management of patients more difficult. In other words, if these doctors have their way, CFS will disappear as a distinct entity. Moreover, general physicians and psychiatrists will take over the care from the immunologists, gynaecologists and other specialists who study and treat these disorders now. However, not everyone believes that a new classification system is either warranted, or useful. Here are some of the main arguments for and against.
The arguments for FSS: Wessely et al.There are a number of reasons why doctors believe that disorders like CFS can be grouped together with FMS and tension headaches. Prof. Simon Wessely and colleagues, writing in the Lancet, defined FSS as conditions which “after appropriate medical assessment, cannot be explained in terms of a conventionally defined medical disease”. Among the similarities, they listed:
The arguments against: responses to Wessely et al.The Lancet published one letter supporting the new classification and three critical letters, all on CFS (Colby, Goudsmit/Shepherd and Jason et al.) Drs. Goudsmit and Shepherd challenged the idea that the differences between the various disorders were of no clinical significance. Prof. Jason et al noted that multiple sclerosis also disproportionately affects women, and that early explanations also implicated psychological causes (such as stress linked with oedipal fixations). They pointed out that fatigue is only listed in the definitions of six of the other disorders, so it’s an “overstatement” to claim that the core symptoms of the various syndromes overlap. As regards having more than one syndrome at the same time, they commented that “in medicine, patients sometimes have more than one illness, yet few would advocate classifying a patient with both cancer and heart disease as having only one syndrome”.
The American view: Barsky and BorusLast summer, the Annals of Internal Medicine carried a review by psychiatrists Drs. Arthur Barsky and Jonathan Borus. They defined FSS as syndromes “characterized more by symptoms, suffering, and disability than by consistently demonstrable tissue abnormality.” Indeed, they perceived FSS as basically “benign symptoms and self-limited conditions” which are amplified and wrongly attributed to external factors (viruses, toxins etc.). Apparently, the amplification and resulting increase in disability are reinforced by media publicity, sympathetic physicians, special clinics, litigation and “hotlines”. Chronicity is associated with secondary gains.
The arguments against: responses to Barsky and BorusThe vast majority of the letters published in the Annals were highly critical. Indeed, we found only one positive comment and that did not relate to CFS. Here are some extracts. Dr. Hedrick focused on the authors’ bias, and the omission of important research which undermined their arguments. Meanwhile, Dr. McSherry noted that he’d “never been able to determine how secondary gains that include financial hardship, social isolation, and reduced quality of life can perpetuate illness behavior and offer anything other than a spur to recovery”. Kenneth Cleminger wrote as a patient, challenging the argument that CFS had “enough in common” with other syndromes for them to be lumped together. “Since when was ‘enough’ a suitable qualification to pass peer review? What constitutes ‘enough’? One symptom common to both syndromes? Ten in common? Twenty?” Dr. Goudsmit questioned the authors’ assumption that CFS is a single entity, with a single cause and an identical set of beliefs and behaviours among patients. She also noted the selective discussion of the literature, plus the generalisations, oversimplification and “theory-led blindness to individual differences... Would such obvious bias be acceptable in obstetrics or oncology?” Dr. English challenged the definition of FSS and listed some of the evidence of pathology found in CFS. ‘The burden of proof is on the authors to show “no demonstrable tissue abnormality.” They do not. Subsequent discussion on the CFS lacks logical foundation Even if there were normal histologic findings in the CFS, the authors would still be on shaky ground... A simple ‘I don’t know’ would have been better than specious speculation”. He went on: “The authors confuse absence of evidence with evidence of absence... Absence of evidence may reflect insufficient research, inadequate technology, poor methods, flawed paradigms, closed minds, or lack of clinical experience; for example, in 1980, there was no clear evidence that AIDS was viral - blood products were considered ‘safe’” In response, Barsky and Borus repeated the main point of their report, “which was that psychosocial factors and symptom amplifiers compound, perpetuate, and intensify symptoms that result from a variety of causes and that they make symptom relief more difficult to attain. We specifically did not assert that these psychosocial factors initiate or are necessarily their primary cause... however, once patients are symptomatic, then beliefs, expectations, the sick role, and psychological distress become important in amplifying, maintaining, and perpetuating these symptoms and heightening the disability they engender1. They refute the criticisms that they trivialised these illnesses2, alleging that “these patients are not malingering or feigning illness, nor do they wish to be ill or prefer to remain so”. Indeed, they claimed that the entire thrust of their paper was “to take their suffering seriously”. They also argued that the same psychosocial factors operate in some medical conditions, such as ischemic heart disease, and admitted that there may well be a sub-group of patients within each FSS who “have a medical condition that is not yet adequately understood or diagnosable by using current techniques”. Last but not least, here are some points raised by Drs. Bell and Lapp in their letter (published elsewhere) - They reminded their colleagues that the existence of an illness is not dependent on a reliable, objective marker to identify the condition, or upon knowledge of aetiology. “We accept the existence of a migraine despite the lack of blood tests or x-rays that prove its existence.” Besides, “the assertion that there are no markers to identify or study CFS is incorrect.” They went on to note that “unfounded opinions can lead to cutbacks in research funding, erect obstacles to published research, and increase the difficulties of patients who seek compassionate medical care.” In these cases, “the authors would be committing gross malfeasance, harming both the medical community and the patients to whom they are dedicated to serve”.
CommentsWe have followed the literature on CFS for many years. We are both trained in science and are reasonably familiar with the theories and the politics. Having considered all the arguments, we are not convinced that a change of classification is justified. Here are some additional thoughts on the issue. First of all, much of the evidence supporting the concept of FSS relies on generalisations and some deeply flawed research. According to Barsky and Borus, their review was based on articles obtained using the database ‘Medline’. However, it’s unclear how this search managed to unearth so many studies supporting psychiatric explanations for disorders like CFS and PMS and virtually none of the publications suggesting that biological factors play a major role. In terms of CFS, it also missed all the studies challenging the effectiveness of CBT etc. Elsewhere, the authors resorted to out-dated stereotypes and the reasoning one expects from poorly informed laymen. For instance, we were amazed to read that the ‘predominance’ of female patients was considered a good reason to reclassify a condition as psychiatric. There was also a tendency to regard any link with psychosocial influences as support for the classification of the condition as ‘non-medical’. Our impression was that the authors placed much more weight on research suggesting the involvement of psychological factors. Such findings were clearly regarded as more valid, reliable and persuasive than the evidence of pathology. That brings us on to the question of the benefits of reclassification. Does anyone know of an instance where our knowledge of disease progressed as a result of lumping disorders together and ignoring their differences? We don’t3. Also, the authors claimed that patients with CFS, PMS, IBS, hyperventilation and headaches would be better off seeing the same specialist. On what basis? In our view, science demands precision and that effectively rules out umbrella terms like FSS. It also requires that editors apply the same criteria to assess the quality of articles on FSS as they use in relation to cancer and heart disease. Anyone who is familiar with the literature would have noticed the obvious bias in the selection of the articles and a responsible editor would have insisted on a more balanced, evidence-based account. It may be tempting to publish provocative articles in order to stimulate interest, but one-sided discussions which ignore relevant findings don’t belong in the medical journals. We believe that doctors should be free to express themselves, but there’s a difference between offering an opinion based on reliable, factual information, and distorting evidence which misleads one’s colleagues, Such behaviour wouldn’t be acceptable if we were discussing cancer, multiple sclerosis or even headaches. It shouldn’t be acceptable in relation to fatigue. It disempowers doctors and harms their patients. Whatever happened to the Hippocratic Oath?
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Copyright Dr. Ellen Goudsmit, Editor of the ME and CF’S Medical Update (UK) and Drs. Trudie Doorduin, Science Editor, Medium, ME Foundation, Holland. 2000. © All rights reserved. This article
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