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.
Hi Biella,
your studies (and other) blog posts are a very nice addition to planet Debian, thanks!
However, acronyms caught me, what’s STS?
Kind regards
T.
P.S.: And why do I have to enter my name and email in yellow on white to file this comment? (On Galeon/unstable)
Comment by Thomas — November 17, 2006 @ 1:46 pm
Hi Thomas
I am not sure why the yellow (it appears normal in my blog) but I can answer the STS question! It is Science, Technology Studies and more information can be found in this wonderful wiki:
http://en.stswiki.org/wiki/Main_Page
I sometimes feel weird having non-tech and non-debian stuff be on planet but I know the debian lot loves to think about science. So I do hope that these reflections on the cultural side of science and medicine, even if not technology proper, are insightful!
Biella
Comment by Biella — November 17, 2006 @ 2:10 pm
I’d say this is 110% on the mark.
To me this is all related to the conceptualization of so-called “MUPS” (medically unexplained physical symptoms, eg. CFS) as a postmodern illness phenomenon, the idea being that these multisystemic, hard-to-diagnose illnesses like CFS are forcing the establishment to confront the failure of modern biomedical concepts. Certain academics seem to assume that if symptoms are subjective and affect mind and body in multiple ways, then there must be multiple causation, i.e. perhaps part virus, part psychological, part endocrine dysfunction etc. – implying that the patient needs to do 3000 things to get better, and can’t rely on a doctor to come up with a simple “explanation.”
Postmodern illness may be fun for sociologists, but it’s even more fun for doctors, because it means they no longer have to come up with an explanation for messy cases.
An explanation like, say… a spirochete. Maybe it’s a little too “modern” a concept for sociologists to enjoy (there is a nasty little organism/enemy after all). Spirochetes like syphilis and Lyme invade tissues including the brain, and can wreak havoc in myriad ways, often with only subjective symptoms.
I find this MUPS thing dangerous, because the patient with the “postmodern” illness is encouraged to take on far more responsibility for their condition than patients with other illnesses. They’re encouraged to avoid focusing on the cause of their illness, because it may never be found (it is said).
But if you’ve got a spirochetal infection, you’d better focus on the cause – because you need to go after it with antibiotics.
Even more alarming to me is Dr. Leonard Sigal’s use of the MUPS concept to throw chronic Lyme patients into the medical dustbin, arguing that they suffer primarily from a sense of helplessness and an inability to express their distress (and puzzingly, in the same article he talks about how angry and assertive Lyme patients can be – I guess he just doesn’t like them very much). The entire paper had only one citation suggesting a psychological basis for chronic Lyme – a study which said that patients with a prior history of trauma/stress were more likely, after having CDC-confirmed Lyme, to experience ongoing symptoms. Sigal said this was evidence that “post-Lyme” is psychological, but he didn’t stop to consider the most OBVIOUS hypothesis – that trauma/stress depresses the immune system, and it is very, very well established that Lyme bacteria persist in immune-suppressed individuals despite antibiotics. Again, they just can’t wrap their brain around the bug, and I think guys like Sigal are having some fun using dumbed-down medical sociology to justify a position that harms patients, while the sociologists miss this abuse of power because they’re so darn excited to see someone in the biomedical establishment using their concepts.
I also have to ask myself if it’s a coincidence that just as the IDSA came out with these insanely restrictive guidelines, the CDC suddenly has a huge new CFS awareness campaign with the slogan “Get informed. Get diagnosed. Get help.”
Can you IMAGINE the CDC worrying about undiagnosed Lyme cases (which they should, after all, since you want to catch them as early as possible) – and had the statement “Get diagnosed” on their Lyme page? They’re complicit with the IDSA, squeezing everyone out of the definition of Lyme (and into CFS) as fast as they can. Late Lyme and CFS, by the way, are impossible to tell apart clinically.
The IDSA went so far overboard in the new guidelines, I think it’s only going to come back to hurt them. If you look carefully, there’s a lot that’s just plain indefensible. For example, two out of three NIH-funded double-blind clinical trials show a statistically significant benefit to long-term antibiotic treatment. They summarize this by saying there is “no evidence” long-term antibiotics help. Right, like that’s gonna fly once people start looking at this.
Comment by BB — November 17, 2006 @ 11:22 pm
Have you seen:
http://en.wikipedia.org/wiki/Lyme_disease
The page is pretty stable now and rated “A-Class”, but talk about contentious politics. Take a look at the Talk page’s history (http://en.wikipedia.org/w/index.php?title=Talk:Lyme_disease&action=history), and you’ll notice that some content was removed by administrators because it was potentially libelous. Nasty stuff against ILADS.
Comment by BB — November 17, 2006 @ 11:34 pm
Wow, that yellow on yellow will surely weed out the
very sick people from commenting! Just kidding..
Great article! One of the best I’ve read in some time
and I’ve read a lot of them.
I came away from reading your article thinking that
LD bacteria must be smarter than most docs.
and
would like to say BB’s MUPS is brilliant.
Comment by Mary de Lisser — November 23, 2006 @ 7:19 pm
I need to solve this yellow problem, don’t I?
Thanks for the cooment… And hahah about the lyme bacteria being smarter than most doctors. Maybe the lyme foundation should write about a shirt with that message!!!
biella
Comment by Biella — November 24, 2006 @ 10:35 am
Carolyn
I found this article to be extremely useful for me. Thanks!
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