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A Few Words From Charles Binder

You can learn a lot by watching TV.

This last week I learned that people with fibromyalgia are supposedly faking it, that one of my former employees was inadequate because her heart wasn't in it...and that you cannot reach me on the phone (though clients somehow do so every day). I learned that in one part of the country where we have always had trouble winning...well, it might have something to do with a cozy arrangement between a local lawyer and a local judge. And finally, I learned that 60 Minutes can do a whole show on disability and yet not ask one claimant about his or her experience with the Social Security Administration, nor ask anyone in the disability field to respond to a US Senator who has long been an enemy of the program.

First, let's talk about the one of the disorders that many people opposed to the Social Security Disability program hate the most: fibromyalgia. Fibromyalgia is a rheumatoid-like disorder. Its basic symptom is pain all over the body. The experts, the rheumatologists, have instructed the physicians in their field what to look for. There must be a large number of trigger points that produce pain before a doctor can make the diagnosis. And the doctors who treat this condition are very experienced in dealing with patients in great pain. Yet to hear the bellowing of those opposed to the Disability program, every one of these patients is somehow a faker, and every one of these physicians is either a fool or a willing participant in a fraud against the Social Security system. These patients are not fakers, and the doctors are not frauds. They are just easy targets for politicians who want to eliminate the entire Social Security program.

Even medical experts are not always in agreement about complicated conditions like fibromyalgia. The history of medicine is filled with error and disbelief. This has occurred time and again even in my lifetime. For example, when I started representing disabled people, internists testifying on behalf of the Social Security Administration would be dismissive of many cardiac patients who had chest pain. If a catheterization had been normal, these "experts" would say there wasn't any cardiac involvement, and that my client did not have a heart condition. Sometimes they would suggest that my clients alleging frightening chest pain had psychiatric problems only. Other times, these government "experts" would suggest they were malingering. But in my view, their treating doctors, the ones who knew their patient best, would not be suggesting disability if they did not think their patient was in bad shape. As it turns out, there are many causes of chest pain, including deadly cardiac disorders that produce symptoms without large blockages of the arteries. The model most of us were taught 20 years ago-the model that explained that heart attacks were caused because of gradual blockages of the arteries over time-was wrong. At conferences I have attended, world famous cardiologists have explained that the new model for heart attacks is more complicated than the simple circle becoming narrower and narrower.

But it is not just heart conditions that are difficult to diagnose. A Nobel Prize went to an Australian doctor who first proved that stomach ulcers were caused by a bacteria. He was ridiculed; doctors kept prescribing bland diets and drinking milk instead of antibiotics. He was right; they were all wrong. Similarly, when I started working in this field, it was next to impossible to prove multiple sclerosis was disabling. Clients would be seen by multiple specialists including neurologists, eye specialists, and psychiatrists. The disease was well known, even well studied but almost impossible for physicians to diagnose early. My clients would go from one specialist to another being told that the doctor did not know what was wrong... or worse-- frequently they were told they had a psychiatric disorder because there was no "objective proof" of a "physical" disability. Until MRIs were common and could show the now classic signs with lesions, clients would lose multiple sclerosis cases because there was no "objective proof." The early days of HIV were the same. And there are probably a dozen more conditions I could name where clients were denied because of the lack of "objective proof" even though in every case there was objective proof--the clinical judgment of a treating physician.

The problem is that pain and other symptoms are often difficult to prove. I read recently in the New England Journal of Medicine an essay by a physician at a major teaching hospital who developed a painful disorder that proved very hard to diagnose or treat. Despite his status as a doctor, he too was disbelieved. There is no simple test for pain. It remains a judgment call made best by doctors. Some people seemingly have low thresholds for pain; other people seemingly should be in great pain but refuse treatment for it. Every person is different. Pain is biological, chemical, cultural, mental but still objectively immeasurable. The only thing that medicine seems to agree upon is that the most accurate test for pain is what the patient reports.

Just one more comment...I am glad I did not speak to 60 Minutes. I realize now that it was a set up. To have only one side of an issue is not a news show. There are a great number of articulate and knowledgeable people in the disability community, but not one was contacted to respond. No response was wanted by 60 Minutes. But I did not refuse to speak to them; I never heard from them that they wanted my opinion. I was correct in both ways.

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