Not Just Us

The Senate Health, Education, Labor & Pension Committee hearing on Pain in America (read a summary here  or watch the hearing here) made me realize something: it is not just the CFS community that has to struggle against psychogenic arguments and labeling.

Most people in the CFS world are familiar with the theories and pronouncements of Dr. Simon Wessely  and others who believe that CFS has a mental/emotional cause. I won’t derail this post to go over that well-traveled ground. But I was unpleasantly surprised to hear some of the same language and arguments at the hearing on chronic pain.

The first four witnesses (Dr. Lawrence Tabak, NIH; Dr. Philip Pizzo, Stanford; Dr. William Maixner, UNC; and Christin Veasley, National Vulvodynia Association) were truly excellent, and they made many of the same arguments for increased funding of pain research that we routinely make for increased funding of CFS research. But then Dr. John Sarno of NYU delivered his comments, focused on a pain syndrome he calls Tension Myoneural (or myositis) Syndrome. According to Sarno (who coined the term), TMS is physical pain, particularly back pain, produced by unconscious and suppressed rage or other negative emotional states. Sarno stated in his testimony that the physical pain is real and results from physiological changes induced by those emotional states.

Dr. Pizzo was masterful in his responses to Dr. Sarno’s comments, pointing out that we need to be “very sensitive to the words we use.” He contrasted the way cancer pain is perceived and treated, where providers and family rally around the patient, with how pain syndromes like fibromyalgia are perceived and treated. Both he and Dr. Maixner spoke eloquently about the role of situational factors in chronic pain, including lack of access to care, injury from heavy physical labor, and stress-activated genetic pathways. In response to a question from Senator Bernard Sanders (I)(VT), Dr. Maixner described socioeconomic status as a “surrogate marker” for chronic pain, as the incidence of chronic pain is higher among people of lower socioeconomic status. Dr. Sarno, on the other hand, stated: “Poor people are poor and they’re angry. They’re furious. Fury evokes physical symptomatology as a defense against the rage.” Yes, that is a direct quote, as best as I could transcribe it.

It turns out that the reason Dr. Sarno was invited to testify at the hearing was because Senator Tom Harkin (D-IA), chairman of the committee, invited him. Why? Because, as Senator Harkin shared during the hearing, he used Sarno’s techniques (described in Sarno’s four books) to “cure” himself of disabling back pain. Furthermore, a female relative of Senator Harkin’s “cured” herself of fibromyalgia using the same techniques. Senator Harkin expressed disappointment several times that the Institute of Medicine’s report, Relieving Pain in America,  did not address the psychological origins of pain and the possibilities of treating pain with psychological techniques. To be fair, Harkin stated his strong support for increased funding for pain research, but wants research to “look at everything,” including psychogenic explanations for pain.

Dr. Pizzo thanked Senator Harkin for sharing his story, but cautioned that we cannot lose sight of the patients who have tried and not benefited from currently available treatments. Christin Veasley was impressive throughout the hearing, but I especially loved the way she responded to Senator Harkin on this point. She stated that she has tried all the mind-body techniques to manage her own chronic pain, including yoga, biofeedback, stress reduction and more. But none of those treatments have cured her pain. She acknowledged to Senator Harkin that “Your experience is real, as mine is real.” Ms. Veasley pointed out that we can’t expect to understand or tease apart the multiple contributing factors in pain if we don’t research it, and no answers will be found until there is adequate research.

Perhaps I should be grateful that Dr. Sarno was the only witness peddling a psychogenic cause for chronic pain and, indirectly, peddling his “cure.” Perhaps I should not have been surprised that Dr. Sarno and Senator Harkin so vigorously embraced this simplistic explanation for pain. But truthfully, I was appalled, just as I am every time I hear the claim that there is a psychogenic explanation for my own illness. Emotions certainly play a role in coping with chronic pain and CFS, but that does not make emotions the cause of either condition.

Dr. Sarno claims that once patients understand that their pain is a surrogate for their suppressed rage, the “need” for the pain disappears and they are cured. It’s true that I am angry, Dr. Sarno. I’m angry that doctors like you are so dismissive of my experience. I’m angry that inadequate levels of research funding mean I will have to endure advice like yours, in addition to my physical pain, until the real answers to CFS and chronic pain are understood. And despite the fact I have just recognized and acknowledged my anger, I am still in pain and reliant on the inadequate treatments I described in my written testimony to the committee.