By Dr. Billy Goldberg and Mark Leyner
Dr. Billy Goldberg: Well, here it goes…Our Body Odd podcast is becoming a blog, and now we apparently have to write something logical and organized rather than just rambling on incessantly from one topic to another. Or do we? This is the blogosphere isn’t it? Which always reminds me of that eco-experiment in the Arizona desert or worse the 1996 Pauly Shore movie, "Bio-Dome." Anyway, Leyner and I hope to maintain the same back and forth, free-wheeling, question and answer, educational and entertaining banter that we (and hopefully you, too) enjoy.
Today we’ll try to shed some light on a variety of syndromes with vague, subjective symptoms and how physicians sometimes view them as “dubious diseases.” Don’t expect a clear answer.
Last week, the Centers for Disease Control and Prevention decided to invest $338,000 to determine the truth behind Morgellons, a bizarre skin condition where patients believe that they are infested with bugs. Dermatologists believe it is in their minds. I have never seen a patient who claimed to have this condition, but I have dealt with patients who come in with a long list of ambiguous ailments that include chronic fatigue, restless leg, irritable bowel and fibromyalgia.
Last year, the Food and Drug Administration approved the drug pregabalin (marketed by Pfizer as Lyrica) for fibromyalgia, a condition that primarily affects women and is characterized by muscle pain and fatigue. A fibromyalgia diagnosis is based on clinical symptoms alone. There are no tests to prove whether it exists or not and nobody knows the cause. Some doctors doubt its existence. All I know is that medicine is often imperfect.
There is so much we don’t know and I never hesitate to admit that physicians don’t even come close to having all the answers. I try to take my patient’s complaints seriously, even when my instinct tells me that the symptoms are more emotional than physical. How can you ever truly know? I do worry sometimes that there is a danger to labeling these conditions. It reminds me of a quote that I came across in medical school:
"For each illness that doctors cure with medicine, they provoke ten in healthy people by inoculating them with the virus that is a thousand times more powerful than any microbe: the idea that one is ill."
--Marcel Proust
Mark Leyner: It seems to me that the pharmaceutical industry and the FDA have become the arbiters of what is and isn’t a “real” disease (“real” being a profoundly dubious concept unto itself). Now that there’s a drug being marketed to treat fibromyalgia, it went from being a “dubious disease” to a bona fide “clinical syndrome,” albeit an idiopathic one (i.e. with no known causes). To some degree, until there’s a drug to treat it, a disease is not officially recognized. It’s marginalized, ghettoized and generally disparaged and ridiculed as “dubious.”
All of this appears to be much more economically and culturally determined than purely scientific. We really have to pay close attention to the economic etiology of disease – the pharmaceutical chicken-and-egg syndrome.
First comes the drug, then the efflorescing “indications,” and then the new official diseases and syndromes. The mere act of giving something a name seems to confer legitimacy. But one of the hallmarks of a “dubious disease” is many names. Fibromyalgia was known by whole host of other names: including fibrositis; chronic muscle pain syndrome; psychogenic rheumatism; and tension myalgias.
Of course, the technical chime of an acronym confers a powerful form of official status. There’s ADD (attention deficit disorder), OCD (obsessive-compulsive disorder), SAD (social anxiety disorder and seasonal affective disorder), CFS (chronic fatigue syndrome), ME (myalgic encephalomyelitis), ITFS (itchy trigger finger syndrome), WWMD (wicked witch melting disorder), etc.
Take RLS (restless leg syndrome), for example. RLS is a nice, officially recognized, albeit idiopathic syndrome. It’s got two nice official drugs, Ropinirole (marketed as Requip) and Pramipexole (marketed as Mirapex and Sifrol) – both dopamine-agonists used to treat Parkinson’s disease – that now have FDA-approved indications to treat it. And, best of all, RLS (like all acronymic diseases and syndromes) make perfect mitigating defense arguments. “Ladies and gentlemen, I ask you, how restless do a person’s legs have to get before he just snaps and lashes out at the person lying next to him?”
So, yeah, the CDC is now paying Kaiser Permanente to investigate this absolutely fascinating condition called Morgellons, which involves the sensation of insects crawling all over you and erupting sores from which sprout multi-colored fibers! Most doctors seem to think this is all some bizarre shared delusional parasitosis (a psychosis in which people believe they’re infected with parasites). If it is indeed a shared delusion, all the better, I say.
It’s generally considered to be vulgar and “kooky” to invent your own disease. But I’ve always thought that it’s a fantastic form of self-invention and self-definition. If we can be “well” in multifarious ways, we should be able to be “sick” in multifarious ways. Those designations shouldn’t be the exclusive prerogative of some doctor or the FDA. Just because it doesn’t have a DRG-code (a health insurance diagnosis code) doesn’t mean you can’t claim to have it. In fact, the more dubious and delusional an illness is, the more appeal it has for me. I’m a fanatical proponent of the UFO-ization of medicine.
How about those UFO-sightings in Stephenville, Texas? Several dozen people saw the thing, including a pilot and a county constable. A county constable! Is there a more credible paragon of sobriety and probity in this god-forsaken world than a county constable? If a county constable said he had sores all over his body with red, white and black threads spouting out of them, you’d believe him, right? But if some New Jersey housewife in curlers, puffing on a Marlboro Light, says the same thing, well, she’s suffering from “delusional parasitosis.” It’s so obviously unfair.
Creating pathological identities for ourselves is an august and complex endeavor. Disease distinguishes us from the herd. It makes us unique. In this demeaning, tabloid-consuming, star-crazed world, it can be our weapon against terminal anonymity. It can make celebrities of us all and, conversely, afford solidarity with our afflicted brethren. Someday, pathology will replace ideology and ethnicity, and candidates will have to pander to fibromyalgia sufferers and social phobics, instead of Hispanics and social conservatives.
So, hats off to all dubious, delusional and purely psychosomatic diseases.
You know the joke, right? A guy goes to doctor complaining of a whole host of symptoms that’s he’s been suffering from for months. The doctor examines him and says, “Listen, I can’t find anything wrong with you. You just think you’re sick.” The guy goes home. A few weeks later, he’s back at the doctor’s office. “I feel terrible,” he says. “All my symptoms are getting much worse.” The doctor gives him another thorough exam and shakes his head. “You’re absolutely fine. You just think you’re getting worse.” About two months later, the patient’s brother is walking down the street and he runs into the doctor. “How’s your brother doing,” the physician asks. The brother looks at the doctor and replies: “He thinks he’s dead.”
