To the Editor:
Harth and Nielson are colleagues whose work has enlightened the issues of fibromyalgia (FM) and its identification and management. Our views differ in several ways1. They believe FM is a “separate entity”; we do not2. They believe FM is a useful concept; we see it on balance as harmful. They appear to believe that the “physiological” or “pathological processes” that have been observed are causally and uniquely related to FM symptoms. We do not believe that: all pain occurs through physiological processes — processes that are not unique to FM.
FM is an easily recognized syndrome that is defined and characterized by high levels of polysymptomatic distress. The pain and suffering of people with FM is real and substantial. Some of us who helped characterize the FM syndrome, and who have treated people with the syndrome, now believe that the FM concept has evolved into something harmful, and such was the subject of our previous essay1. We described our concerns in the context of social construction and medicalization, and mainly with respect to societal harm.
Harth and Nielson make light of our concerns about academic and societal integrity. In 2008 I was invited to speak at an FM symposium directed by a major New York academic center. It was a big symposium designed to attract primary care physicians in the New York City area, and it was sponsored by a pharmaceutical company. I offered to speak on “Fibromyalgia, a social construction not a disease.” This was the reply: “I regret to say those that are in charge have shot down the idea of an anti-talk, seeing as the idea is to try to educate internists to recognize and understand FM and not question it...” Readers can calculate the exchange of access, money, grants, fame, and sales that flowed from this pharmaco-academic alliance. But it goes beyond that. We advise readers to go back and reread our comments on disease-mongering and influence-peddling2. Harth and Nielson offer not a single refutation.
Harth and Nielson are perplexed that some might not accept FM as a separate illness if it is part of a “continuum-based entity.” Using “hypertension, diabetes, obesity, and osteoporosis” as examples, they state, “It is unclear to us why being a continuum-based entity should serve as a rejection criterion for FMS but not other medical illnesses.” Here is the reason. The committee-defined illnesses cited above separate patients into 2 groups, diseased and non-diseased. The FM designation separates patients into those with more polysymptomatic distress and those with less polysymptomatic distress. It’s more versus less rather than present versus absent. How can more versus less be a disease, an illness, a defined entity?
We are puzzled why Harth and Nielson, and others who share their views, vehemently defend FM as a distinct disorder in the face of overwhelming epidemiological and clinical evidence to the contrary. We can study FM and care for patients without believing it is a unique disorder2. So why do they insist? We discuss why in our article, and we refer readers back to our essay2.
We are also puzzled when Harth and Nielson pick a single point, a paraphrased and cited discussion point from other authors — “no specific pathological process” — and then argue strongly by analogy on behalf of nonspecific processes. Pain is “always biological and always cultural”4. And it is also inconceivable that patients along the polysymptomatic distress continuum do not have similar, though fewer or less intense abnormalities, than those selected by FM criteria.
Harth and Nielson do not understand the concept of social construction, as when they write, “In contrast with the diagnostic label ‘fibromyalgia,’ referring to it as a ‘socially constructed illness’ implies that there is no physiological basis and, to many, that it is ipso facto psychological or factitious.” We did not imply “no physiological basis.” That is an inference of Harth and Nielson. Socially constructed and real are not opposites, nor does socially constructed necessarily imply psychological. Hacking offers the example of “real” child abuse and the “social construct” of the idea of child abuse5. In our essay we argued “that the contention around FM should be not whether or not it is real or whether abnormal central biology can be ascertained, but the extent to which cultural factors dominate the illness, the extent to which it is socially constructed and medicalized...”4. We would like to refer Harth and Nielson to our essay references on disease definitions2. In addition, we want to make it clear that we believe that there is a physiological basis for FM. As we quoted above, “Pain is ‘always biological and always cultural”4. They decry Cartesian dualism, but dualism seems to be their idea, not ours, as this paragraph indicates.
Their letter contains many misstatements and misattributions. Much of what they say is argument by analogy or personal experience. Fibromyalgia treatment is hardly “efficacious.” Their idea that rheumatoid arthritis, ulcerative colitis, and asthma were psychosomatic diseases was held by a small number of people 60 years ago, has nothing to do with FM, and has no relevance to the issues under discussion; nor are H. pylori or Freudianism relevant.
We can turn around the critique that Harth and Nielson have thrown at us and present their model to Journal readers. It is: Fibromyalgia is a separate entity (“a real, real, real disease”) that is easily diagnosed by separating tender points at the right spot. It is caused by physiologic mechanisms. All psychological features are secondary. Social and cultural issues play no important role. Treatment is efficacious. The lawyers, drug manufacturers, providers are all there to help. Goodnight Moon6.
Jeff Sarkozi’s interesting letter is primarily about issues that I did not address in my essay7. His comment that “there is absolutely no evidence that central sensitization actually causes spontaneous, non-externally stimulated pain. The implication that the pain of FM arises out of a central sensitization syndrome, despite the knowledge that central sensitization is a modification response to actively induced pain and not a source of pain itself, is a true failure of medical science” contrasts with the response of Harth and Nielson. Those authors might also not agree with Sarkozi’s “We also know that most studies regarding treatment of FM demonstrate only some degree of benefit in the 30% improvement range or less, for only some symptoms, for only some patients, and usually in the short term. Rarely do patients get a high degree of benefit, such as a 50% reduction in symptoms, especially the pain component12. Finally, we know that, overall, the prognosis for patients with FM is dismal and that overall, patients do not get better.” Sarkozi’s book is interesting and might be read by all.
REFERENCES
- 1.
- 2.
- 3.
- 4.
- 5.
- 6.
- 7.