The makers of the lyme-disease documentary 'Under the Eightball' held its first screening outside of Michigan last week at the Brattle Theatre in Cambridge, MA.
This screening was sparsely attended, perhaps due to limited advertisement of the engagement. The film makers, Timothy Grey and Breanne Russell, were in attendance and introduced the movie, adding that they had a video camera if anyone wanted to ask any clarifying questions in film afterward.
Note: This never happened and I did have some clarifying questions to ask. I've emailed these to the film makers, who responded that they were happy to field my questions, but although they knew this article would be posted today, I've received no response. I will include my questions to them as a comment on this post - and if/when answers are received, I'll post them here also.
Timothy Grey's sister Lori Hall Steele (a journalist, see: http://www.lorihallsteele.com/bio.php) underwent a medical ordeal that is all too common, and very scary. What turned out to have been lyme disease (as suspected by Lori and her family, and confirmed only by a post-mortem analysis), was repeatedly misdiagnosed and therefore mistreated. Lori ended up dying from a disease that can be treated with antibiotics. Her doctors insisted she had ALS (Lou Gehrig's disease, http://www.alsa.org/), a disease not treatable with antibiotics or any other means.
Grey documented much of his sister's medical drama, including hospital visits and her family's attempts to determine what had made her so mysteriously ill. Their search brought them from potential environmental causes outside the home (polluted soil and waterways in his sister's Michigan neighborhood) to potential environmental causes inside the home (harmful mold spores).
Grey also spoke with many doctors and scientists who explained the difficulty in diagnosing lyme disease - the western blot (a way to determine the presence or absense of certain proteins, by 'blotting' them with antibodies that recognize them and can light up when exposed to film - see this site for a visual aid: http://www.bseinquiry.gov.uk/report/volume2/fig1_8.htm) turned out to lack sensitivity and often provided false negative results, as happened in Steele's case.
In fact, the CDC does warn against tests that lack sensitivity, and recommends an ELISA (a similar assay to a western blot in that it recognizes proteins using antibodies) for a definitive diagnosis (http://www.cdc.gov/ncidod/dvbid/lyme/ld_humandisease_diagnosis.htm). Just last year, a publication testing various ELISA and western blotting methods of diagnosis for lyme disease, found great variability (Prospective Study of Serologic Tests for Lyme Disease, Steere et al. Clin Infect Dis. 2008).
After Steele's death, captured in a moving tribute during the middle of Eightball, Grey set out on a mission to determine how and why his sister died from lyme disease. And this is when the movie took a turn - the sadness and anger stemming from Steele's death seemed to have been funneled into a vortex of scientific truths and conspiracy theories. As a scientist, whenever I see a mash of sound-bite clips from people with unexplained degrees (Ph.D.? In what? from where? How is this person a qualified expert? Were the answers taken out of context? Where is the proof for the claims?) - I begin to worry that the facts are being clouded by emotion.
However, some facts were there, despite being interspersed with conjecture and speculation. In the 1970's around Lyme, CT (the town is the namesake for the disease) a collection of arthritis-type illnesses got the attention of scientists after alarm was raised by two concerned citizens, Polly Murray and Judith Mensch. It wasn't until 1981 that the disease was blamed on transmission from ticks of a spirochete bacterium later named Borrelia burgdorferi, after Dr. Burgdorfer (of Rocky Mountain Laboratories) who with Dr. Steere of Yale pinpointed the cause of lyme disease.
Grey then made the connection between the disease outbreak in Lyme, CT and its close proximity to Plum Island, a federal animal disease laboratory known for research on biological weapons to be used against the food supply - and also known for its lack of safety and containment measures. In 2004, the book Lab 257, written by Michael Carroll (a former Wall Street attorney) garnered media coverage for its similar claim that lyme disease was the result of an infected tick escaping from Plum Island laboratories and infecting a deer on the island who then swam to Lyme, CT and infected humans there.
This story is refuted by federal accounts of activity on Plum Island. For example, see: http://www.dhs.gov/files/labs/editorial_0902.shtm, which includes this clear statement: Plum Island laboratory "Does not and has not performed research on Lyme disease".
However, what appears to be the main resource for Grey's claims in Eightball is www.lymecryme.com, and an 'expose' written by PatriciaA. Doyle, Ph.D. (not to be confused with legitimate parasitologist, Patricia S. Doyle whose academic website offers no mention of lyme disease: http://pathology.ucsf.edu/mckerrow/pdoyle.html). This document attempts to connect research on Plum Island to an outbreak of lyme disease in CT, but it does so very weakly. So called evidence of tick research on the island is not connected to lyme disease - so if ticks were being used on Plum Island, that does not provide evidence that lyme disease was being studied there as well, or that lyme disease was put into ticks who then escaped the facility - there are a lot of gaps in the logic of this argument, and a lot of missing data.
Indeed, new research out of the University of Bath show that the lyme disease bacterium originated in Europe before the ice age - and new cases of lyme disease are continuing to increase in Europe as they are in the U.S. This piece of information is conveniently left out of any analysis of Plum Island's role.
Perhaps some new piece of information will come out to shed more light on a potential connection between Plum Island and lyme disease, but for now, the links are weak and purely correlative at best. This appears to be a classic case of correlation being mistaken for causation - one of the most dangerous mistakes in science.
As for Eightball's insinuation that the government would like to see lyme disease continue undiagnosed and untreated in order for scientists to study the mechanism of the illness - the lack of data make the assumptions seem like pure conspiracy theory. The film makers cite the Tuskegee experiment as one example (of which admittedly and sadly there are many) of the government knowingly conducting (harmful) scientific experiments on the unwitting. However, our government now uses this as a striking example of scientific misconduct and poor ethics (see: http://www.cdc.gov/tuskegee/timeline.htm). There is no record of such experimentation in modern times, not to mention that the task of convincing doctors and medical professionals all over the world to partake in this clandestine operation seems like an insurmountable task.
All in all, I do think Under the Eightball serves an important purpose, and I do recommend you go see it. It starts many important conversations about science and medicine, many conversations that the film itself does not even continue (see my comments to the film makers below), but which you could continue in your own communities. Issues of environmental pollutants, misdiagnosis and laboratory testing shortfalls, patient involvement in their own healthcare decisions, epidemiology, biological warfare testing, and many many others.
Overall, I think Grey has revisited the lyme disease debate which has been out of the media for some time. And hopefully out of this renewed interest and scientific progress, fewer people will be misdiagnosed and more lives will be saved.
Update: Nov. 20, 2009:
Please read the comments below, as Breanne Russell has kindly provided answers the the questions I posed previously.