So your views about the patient communities changed after you became more directly engaged with them?
Eventually, I concluded that patients possess more wisdom and expertise about this disease than anyone else. Admittedly, you’ll hear people in patient communities saying all sorts of implausible things. And my initial objection, that many patients have little understanding of how science works, is also true (although the same holds for the general public, of course); yet there are trained scientists in the patient community as well. Regardless, patients are the ones confronted with the reality of their illnesses, day in and day out, and they’re highly motivated to figure out what will help. They’re sharing the results of their personal experiments online, and they’re finding strategies that make a difference.
I think of patient communities as being a bit like bands of guerrilla fighters. They don’t have the organization or resources that armies of scientists have, but they know the terrain of the illness far more intimately. They can move quickly to explore a new idea, whereas it takes years for scientists to get their grants and perform their experiments and write and publish them. And sometimes, it’s the guerrilla fighters who win. Patients and scientists, of course, are (or at least should be) on the same side, fighting the illness. They need to work together, understanding and valuing the particular strengths their partners bring to the struggle.
