Recently I read an amazing review of patient advocacy and health (counter)movements by
Steven Epstein from the STS program at UCSD. It is still a draft but bound to be published in the New Handbook of Science and Technology Studies and when it is, anyone who works in this area will gain so much from reading the review. It was stunningly broad yet highly specific. He is able to synthesize an enormous literature on patient advocacy, a field that has seen a blizzard of activity, especially in the last twenty years. Along with providing points of entry and departure into the field, he also examines who the burgeoning interest in the field of STS.
What I found interesting is that there is very little work being done on a topic I happen to know a lot about, lyme disease and whose politics I have been following since at least 1999. I am not sure why the lacuna but it is an odd disease dripping and screaming with controversy and seems to stand apart from many illnesses, in part because of its odd dual existence. On the one hand, it is an illness that the medical establishment totally recognize as real (and thus in some respects is unlike the class of syndromes from MCS to chronic fatigue, which another STS researcher,
Joe Dumit provocatively describes as illnesses you have to fight to get ).
But that is only half the picture because mainstream medicine tends think that lyme is not only easy to diagnose but also to treat, so much so that if a person thinks they have lyme (even after a round of antibiotics or lacking diagnostic markers), the are either seen as suffering from something else (and usually then told they have one of those highly contested syndromes), or more often just crazy. So it exists dually: at once recognized but only narrowly, so that in another form, that of chronicty, lyme cannot exist.
It is this dual quality of lyme that defines and shapes its politics and just recently, new developments have fueled the controversy. Namely it follows from the Infectious Diseases Society of America
new guidelines for the diagnosis and treatment of lyme, published last month. In a nutshell, they basically re-reduce lyme to a very easily diagnosable and treatable illness, calling for even more strict guidelines for its diagnosis than now exist. They sanction a small range of blood tests and thus totally nullify the role for clinical diagnosis, which even the CDC had acknowledged as vital in times past.
Unsurprisingly this has thrown the chronic lyme community in a total tizzy and they have not taken this sitting down. A
petition has been launched and protests have been planned. And amid the controversy, politicians have already heard the call to arms. In the state where lyme is a famous entity for it was first discovered there, Connecticut, its Attorney General is calling for an anti-trust investigation into the Infectious Diseases Society of America, in essence for using their clout and prestige to legitimate a gold standard in diagnosis and treatment, when it seems far from obvious that this should be the standard. According to the
LDA press release:
The national non-profit Lyme Disease Association (LDA), representing more Lyme disease patients than any organization in the United States, applauds Connecticut State Attorney General Richard Blumenthal for beginning an investigation into the Infectious Diseases Society of America (IDSA) Lyme disease guidelines development process. In an unprecedented move, the Attorney General’s office filed a Civil Investigative Demand (CID) to look into possible anti-trust violations by the IDSA in connection with exclusionary conduct and monopolization in the development of the Lyme guidelines
What I find so interesting is that this latest chapter in the grungy and torrid politics of lyme encapsulates the very nature of the politics of lyme, which really is about the agency of bacteria and in the Latourian sense. If Pasteur had to put a lot of effort into making credible the bacteriological model of disease as Brunto Latour covers in
The Pasteurization of France and if there was plenty of future prostelyzing needed to bring credibility to the bacteria to more general publics, as Nancy Tomes illustrates in
The Gospel of Germs, well now, I think we are in an era where we think we have such intimacy with the biological ins and outs of bacteria, it is almost impossible for the scientific community to imagine bacteria as such complex organisms that they can be in fact very difficult to diagnose, eradicate and treat. It is just no longer part of the basic conceptual universe of most doctors and medical researchers to think of bacteria in this way.
The LDA press release acknowledges this very fact in the following way:
The October 2006 guidelines do not acknowledge that a complex bacterium such as the Lyme disease spirochete could possibly survive in the body and the brain, evading the immune system and short-term courses of antibiotics.
For many lyme researchers and doctors, since lyme is a bacteria and we know how to treat those pesky critters, it is frivolous to even imagine or contemplate otherwise. I would call this a hubris that arises not from the arrogance of doctors and the medical establishment but following the heels of success that medicine has indeed had with conquering the bacteria with antibiotics. Even new forms of poweful and highly resistanant TB are still treatable with a potent cocktail.
That is, at a cultural level, I understand the blinders. At a political level, however, because people are suffering and because it is plausible that lyme can exist chronically, it is imperative to unseat this cultural comfort borne from past success to get the ball of research rolling anew.
I think bacteria (and parasites for that matter as a
recent smattering of articles demonstrate) are a lot more savvy creatures that should be treated as novel, wondorous creatures, once again. I would dare say the medical establishment, by refocusing energies on that which they think they have solved, would find themselves quite surprised.
updateHere is
an article discussing the issues.