When you live in the nether world of questioned diagnosis, you spend a lot of time wondering if perhaps those doctors who say the problem is in your head, your lifestyle, and your diet are right. In my case, I was lucky to have a variable enough illness that I was constantly reminded that I was not the cause — as soon as I felt better I did more, no matter how short a time it lasted. I never had to think about it, plan it, or convince myself to do so, I just DID.
Lyme disease patients at least have the existence of a known pathogen to hold onto when they fight the external discrimination, and associated internal questioning, that characterizes their disease. For those with Myalgic Encephalomyelitis (known popularly as Chronic Fatigue Syndrome), until this week, that did not exist. On October 8th, the journal Science published an article by Lombardi et al. titled “Detection of an Infectious Retrovirus, XMRV, in Blood Cells of Patients with Chronic Fatigue Syndrome.” (also see this discussion by the author of Osler’s Web). Pamela Weintraub, in her blog Emerging Diseases reflects on the continued efforts of physicians and researchers to label diseases like Lyme disease and Myalgic Encephalomyelitis (ME) as pyschiatric illnesses. This is a form of discrimination and institutionalized myopia that has systemic negative affects on patients. It stifles research, reduces access to treatment, and forces patients who are already fighting a difficult disease to also fight for respect. Perhaps worst of all, they must devote mental and physical energy to all of this, while simultaneously fighting the internal battles necessary to keep believing in themselves despite a lack of definitive anything and constant encounters with naysayers.
The antidote? A combination of good science and good reporting. The relief that comes with a real diagnosis/cause is hard to describe. Instead of tilting at windmills, there is a concrete entity that you can fight, a basis for deciding among treatments, a specific thing that you can use to explain what’s happening to friends and family. Eventually, maybe, definitive science that can help to show what helps and what does not. Imagine how someone with ME must feel to finally know that 98% of people with the same condition have tested positive for a retrovirus present in less than 4% of the rest of the population. That is the impact of good science.
Good reporting serves another role — it helps to uncover the abuses of power, information, and money that stifles good science. It can bring the science to a broader audience who may not have heard about it. It can tell the stories behind the progress (and lack of progress) that have led us to where we are today. This is what Pamela Weintraub accomplished with her book Cure Unknown. Her book joins a legacy of similar reporting that critically examines the treatment of emerging diseases in this country including “And the Band Played On” (which documents the early history of the HIV/AIDS epidemic) and Osler’s Web (which documents the history of ME/Chronic Fatigue. Details of that history are also summarized in a blog post by the author).
For both, the good reporting, and the good science, I am intensely thankful. All of the people who have stepped up to these problems have profoundly changed the outcomes and experiences of patients like myself. But there is a third leg that needs to be acknowledged and supported as well, something we can all participate in: Activism is required. Each of us may find a different way to contribute, but change depends as much on the masses and individuals. Let’s all follow in the example of the scientists and journalists in our communities and help to create the change that is needed.