Who Gets to Define a Disease?
There is a new effort underway to close the gap between medicine and science. The Institute of Medicine (IOM), under contract by the Department of Health and Human Services, is assembling a panel of clinicians and researchers to devise a new definition for the disease. On the face, this is a good thing and long overdue. It's a chance to get the story straight.
Yet, nearly every expert who would be qualified to serve on that committee is publicly opposed to it. Not to mention many patient leaders. Some consider this the most important crises the patient community has faced since the 1980s.
Why the uproar? First, it is an expensive process: $1 million in public funds that could otherwise be used for biomedical research when there's already a newer definition many doctors around the world who specialize in treating patients with ME have been using for years.
The real concern is that what will come out of the IOM is a story that will condemn us to the same fate we've been living for thirty years: nearly no public funding for research; a medical system that often abuses patients; and no real treatment, outside of a handful of clinics that probably can't take health insurance.
Earlier this year, the IOM publicly advocated cognitive behavioral therapy, antidepressants, and exercise for ME: the same paradigm my doctor was operating under when he told me my illness was psychosomatic; the day before I over-exerted myself and was never the same again.
I was one of the more than 170 patient advocates who signed an open letter asking HHS to cancel the IOM contract. Many patients would say that a democratic government taking an action that virtually all of its constituents oppose is about dirty politics. There's probably some truth to that. I would like to believe that part of it is a matter of being profoundly out of touch.
There is something elusive in the nature of the illness such that unless you live it, or live with and care for someone who does, it's almost impossible understand or describe. You might come close after decades of treating patients. At every turn, language fails.
I am making
a documentary film about ME not because I have any illusion that a film is a cure or that a film on its own can change policy. Rather, so much of the suffering that comes with this disease is needless and borne of ignorance. For too long, we've let others tell our story.
It's hard for me not to wonder if the first doctors I saw had been told a different story about my disease, if they had the experience to recognize what was unfolding before I did, and advocated complete bed rest, if I had never gone on those "healthful" walks, how my story might be different today.
And what might happen to the next generation of patients if we don't have a say in how our own story is written.
