Nortin Hadler has been an pretergressive, indefatigable critic of fibromyalgia since its beginnings. "The longer I live the more I see that I am never wrong about anything, and that all the pains that I have so humbly taken to verify my notions have only wasted my time," wrote George Bernard Shaw, and so it is with Hadler. The Hadler critique is, of course, elegant and noble, an ineluctable portent of the common good that could be ours were it not for our apostasy.
In truth, the Hadler critique is a debate technique. A call for nobility. Down with the medical model. Down with dualism. Down with iatrogenisis. Down with false syndromes, with false labels, with feeling out of sorts, with hypochondria. Already one feels ashamed to have believed, if unknowingly, in such sophistry. Never mind that he presents no data and the sources he cites represent opinion not data. Never mind that the world is complicated. Just follow the orgiastic green light.
The thrust of Hadler’s fibromyalgia complaint is this. Fibromyalgia does not exist unless we create it. According to Hadler those labeled with fibromyalgia are distressed individuals whose ability to cope is exhausted and whose invincibility is challenged, persons who find their living unsatisfactory, even desperately wanting, and feel the need to describe the lacking. In evaluating this Hadlerian definition of fibromyalgia we should first ask if it is true. Richard Feynman reminds us that "...it doesn't matter how beautiful your theory is, it doesn't matter how smart you are -- if it doesn't agree with experiment, it's wrong." So what do the data show when we use the conventional definition of fibromyalgia: decreased pain threshold, widespread pain, fatigue, sleep disturbance and associated symptoms? Figure 1 is a distribution plot of the Rheumatology Distress Index, a composite score calculated from anxiety, depression, fatigue, sleep disturbance and global severity for 1,030 fibromyalgia patients assessed in a nationwide US sample of rheumatology patients. The mean score of 55 is considerably greater than the mean score of RA and OA patients of 39. About 20% of fibromyalgia patients have very low scores for distress, but, as can be seen, many fibromyalgia patients have very high scores for distress. That is, for a significant amount of those diagnosed with fibromyalgia there does not seem to be a fit with Hadler’s definition. It seems just too easy and too simplistic to cast all fibromyalgia patients into one bag.
Professor Hadler does not see many patients with fibromyalgia, and to the best of my knowledge does not perform tender point examinations. For those of us who do both, and who also share some of Hadler’s views, we clearly see a distinct subset of persons who have pain and tenderness without the psychosocial distress that Hadler alludes to and is seen in many fibromyalgia patients. Hadler’s definition would be far more tenable if it were based on data he collected rather than the opinion he promulgated 15 years ago. Hadler doesn’t seem to be even willing to consider that his model may be far from universal but he should.
Fibromyalgia is not a syndrome, Hadler writes, it is a system of beliefs camouflaged by a patina of unfounded science. Nice. But one would have to be blind to fail to recognize the syndrome of fibromyalgia in the clinic. Not to see fibromyalgia is the provenance of the pilpul-helot, not the clinician or scientist. The issue is not so much as to whether there is such a thing as fibromyalgia or whether or not it is a syndrome, but what are the consequences of using the term in a clinical sense. Hadler gives us some idea of what he thinks the consequences are: loss of joie de vivre, horrific tragedy, suffering, reshaped vulnerability. Perhaps. But first let us talk about the usefulness of the fibromyalgia construct.
There is no illness syndrome that more epitomizes the bio-psychosocial model of disease than fibromyalgia. To use the term fibromyalgia is to leave the biomedical model of disease far behind and not, as Hadler avers, to endorse it. The current doctor-patient narrative, Hadler writes, must be grounded in a disease specific label. Why must it be? What law, what Socratic dialogue makes it so? Or is it that the Hadler model works best when all parties behave like idiots? Fibromyalgia has taught us all many lessons. The most important lesson is that bio-psychosocial aspects of disease, so obvious in fibromyalgia, are present in all of the other illnesses we deal with. A second lesson concerns the relationship between tenderness, pain and distress. Note Bene. There is much here. What Hadler says would be much more useful if he acknowledged some of the good science (the earth does circle the sun) as well as attacking the bad science and the societal consequences of fibromyalgia.
I prefer to use the term "distress" to categorize what Hadler sees as problems with coping, pain, fatigue, sadness and challenges to one’s sense of vulnerability, but both he and I mean much the same by these slightly different wordings. Hadler is correct when he criticizes the tendency of some to see fibromyalgia in a strictly biomedical model as I have also pointed out previously (1,2). And he is correct to lament labeling patients when labels become a substitute for knowledge and understanding. We both should and do worry when fibromyalgia becomes a haven for distressed individuals, and when more and more distressed individuals find a home in fibromyalgia diagnosis. We worry when commercialism plies us with drugs and therapies for distress, and when physicians accede to such treatments. We worry when investigators do not see that the Emperor is unclothed.
In dealing with patients, I often find that the word fibromyalgia gets in the way since it has now become a disease to many. Because of this it is now harder for me to approach distress and "culturally shaped idioms of distress" in patients who consult me. But this may be the way of the world, and not very different from the trivial mendacities of our television, our politics and our culture. And fibromyalgia in any kind of legal setting is a futile exercise.
Mock mockers after that, wrote W.B. Yeats. For while it is easy to find fault it is not easy to find good solutions. If rheumatologists and other physicians measured psychosocial status in their clinics and sprung to the fountainhead of the psychosocial model perhaps there would be far less need for the fibromyalgia diagnosis or perhaps fibromyalgia would be less worrisome to people like Professor Hadler and even to me. For it is not fibromyalgia that is the problem but the use to which it has been put that is disturbing.
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