The Lyme Disease Bioweapon Theory and Health-Related Misinformation's Impact on Policy

Hi there!

We’re a reporting team of graduate students at NYU working on a project in collaboration with TPM and you, the members. If you haven’t already seen our original post, you can learn more about who we are and the goals of the project here. TLDR: we worked with members in the Hive to identify areas of interest outside of TPM’s typical coverage and developed an idea for an article to be published on TPM based on what we learned. We are presenting our idea below along with ways you can help contribute. Thanks to all the members who have already contributed ideas and shared their interests with us.

The Story: How misinformation around Lyme Disease ended up informing government policy and how that impacts those afflicted.

Background: A recent book claiming that Lyme Disease is the result of a government bioweapon experiment gone wrong lead to a bill passing the House calling for the Department of Defense to investigate the claim. Meanwhile, approximately 30,000 cases of Lyme Disease are reported to the CDC each year.

How you can help: We’re interested in information on instances of federal, but also, state and local governments responding to and making policy changes in response to health-related misinformation. We would also be interested in any questions you have specifically related to Lyme Disease?

Our Reporting Group: @marijanjacomo @erinmikail @Mfav @sulinjoanna @Felipeleonr

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I’m confused – is the book wrong? I listened to an interview with the author describing her experiences and the book, and it’s an interesting theory to me – a little bit like a real life “Stranger Things”, in which the government’s secret weapon testing gets out.

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I am not at all familiar with this theory about Lyme being an escaped bio-weapon, but my skeptical sense is tingling.
I know that is not the point of your post, however.
I do know that since one of the results of the misinformation spread by anti-vax fanatics is that herd immunity is compromised there are actions taking place on the state (California) level and the local level (East Aurora NY will not be transporting unvaccinated students on school buses) to try and address it. It is the result of misinformation, but I am not sure that is what you are getting at.
Are you looking for instances where the misinformation itself becomes part of the policy?

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Our representatives and senators repeatedly entrust investigations of the DOD to the DOD, with straight faces.

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I’ve heard it before a number of times. A recent article from WP is linked below that has an interesting counter point to the conspiracy theory. Though, if deep in conspiracy, this could all be a smoke screen!

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The author notes that Lyme disease was never used in biowarfare research. He notes that one agent that was used was equine encephalitis, which has infected a number of people in the Northeast this year. I’m not suggesting a deliberate release, for which there is no evidence, but the coincidence is - interesting.

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We’re currently reading the book and fact checking it to figure out the truth is - there’s a lot of mixed discussion we’re finding about it.

Did you read the book? What are your thoughts?

Do you have a link to the interview @manarchist? We’d love to give it a listen!

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@witcheekate We were initially curious about how things that seem at first, a bit wild, how they drive policy and awareness for a disease, and what are the long term impacts of it. Where information becomes policy is a point of curiosity for us, it just seems wild that this is so widespread - but we’re really curious on what you guys think!

Tell me about that skeptical sense. What questions do you have about it? What appears off-kilter to you?

And thanks for the tip about misinformation spread by anti-vaxxers - this is the sort of stuff we love!

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@brendyathome
Do you have other examples of when the DOD has entrusted the DOD before? That part of the amendment seemed funky to me

We’ve been reading the book and working on fact checking it - we find it quite interesting the authors journey. Did you read the book? What stood out to you in it?

I’ll look out for cases of equine encephalitis in the Northeast - do you have a good reference for the outbreaks in the Northeast, @ldemelis?

Federal departments all have something called an Inspector General’s office- like Internal Affairs in a Police Department, but generally more independent (depending on many factors- ). They are the first line of investigation after an issue has been discovered. They can make referrals to the DoJ, which will then either take up the investigation or not. They issue reports, not always made public since what they investigate can be sensitive. There is also the GAO, the General Accountability Office, (used to be Acccounting, they should have left it as accounting) which is an investigative arm of Congress.
The Civil Service Reform Act of 1978 and the Inspector General Act of the same year provide for these kinds of internal investigations. Congress can also launch their own investigations.

Regarding my skeptical sense, @erinmikail I suppose it is a combination of things. A classic liberal education, life experience, and Occam’s Razor. Lyme has been around for a while. Tick borne diseases are not uncommon. Environment and organisms change. What need for a conspiracy theory other than that people are afflicted by it, it is genuinely puzzling and hard to pin down, there is medical disagreement about it, and it is spreading? The ingredients for the need for an explanation (and a bad guy) are all there ready to fuel a conspiracy theory.
The frustration of suffering from something that many doctors are skeptical about and dismiss as some craziness, along with other doctors who believe that there is a genuine syndrome that is causing your suffering just makes things worse.
When something answers such a clear social need (the conspiracy theory) then I think that is a good explanation for its existence, at least tentatively, unless there is considerable proof otherwise. My attitude toward religion is pretty much informed by this approach.

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I live in New Jersey, a place where you use tick repellent and wear long sleeves and shirts on hot humid 90 degree days (and keep you dog’s flea-and-tick protection current). I know what causes Lyme disease. It is carried on deer ticks, of course, and those are carried by a wide variety of critters in the forest. Here in NJ, deer love to hang out in edge habitats. We have a lot of edge habitat in NJ, as new mcMansion developments tend to go up in the woods and the developers donate some as open space. (Makes the subdivision more salable and can be traded in for development rights elsewhere.) The most obvious manifestation is deer making suicide runs across places like I-287 not to mention every other road in the state. (They’ll try it in places like the Staten Island Expressway, in fact.) My Audi succumbed after I’d had it for three months (I still cheer when Bambi gets it). The second most obvious manifestation is co-workers showing up massively wiped out by the antibiotic doses needed to cure it.

The main difficulty is treating it is the level of high-powered antibiotics used to cure it. If you don’t treat it, the patient will die unpleasantly. So it is building antibiotic resistance.

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All bioweapons ever investigated by the U.S., before the program was shut down in the 1970s, are simply wild diseases cultivated in a factory, with the primary issues being the storage and dispersal of the agent so that it is effective as a weapon - meaning producing militarily significant effects in a timely manner.

The technology to engineer new or customized diseases did not exist at the time.

Disease outbreaks associated with bioweapons plants or storage sites are possible – check out the Sverdlovsk anthrax disaster:


Hundreds died, and the area remained subject ot endemic anthrax for decades afterward due to soil spore contamination and livestock being vectors.

Analysis of the Sverdlovsk anthrax show that in 1979 the Soviets also were not modifying organisms in any special way:

Anthrax weapon testing sites can remain contaminated for a long time due to the very stable spores it forms.

For organisms that rely on local host organisms (Lyme disease) to complete its reproductive cycle hypothesizing any sort of bioweapon connection is an incredible stretch. It must be adapted to its local hosts, which means it is of natural origin.

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I’m confused. I know I suggested Lyme for this project, but I’m surprised that the path you’ve taken is this. There’s no “he” as author of Kris Newly’s book “Bitten”, which u think it’s being referenced here. That work is based upon information/interviews with Dr. Burgdorfer and documents she got using the FOIA. Are you b implying this is misinformation/conspiracy theories that shouldn’t be investigated? Is that where you are headed? Mary Beth Pfeiffer has probably done the best investigative journalism on the topic of ticks and Tick-borne disease, beginning with her series in the Poughkeepsie Journal. I hope you’ve read her work. She’s in NYC this weekend for the LymeMind conference at The NY Times Building. That’s a Mt Sinai Hospital and the Institute for Precision Medicine event. Please pm me if you either want to get into that conference, or an introduction. It has great speakers. I’m not sure the direction you’re going is the most important story on Lyme Disease. I don’t have my computer this weekend, just phone, so it’s hard for me to find old PM’s. But new ones should be flagged.

ETA: having terrible trouble editing and spell-checking on my phone.

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Hey @BklynJane - first off, thank you for suggesting Lyme disease, we’ve had a lot of fun starting to dig into it. I’m curious onto why you’re surprised of the path that we’ve taken? What direction do you think we should take.

We’re in the middle of reading her book now, and reading other literature related to Lyme disease including recent book ‘Conquering Lyme Disease’ I am in no way suggesting that we should not look into misinformation or conspiracy theories, but I do think it is important that we make sure that all information is accurate. Accuracy is our first priority.

We will be in attendance at the Lyme Mind conference and I’d love to speak with you if you are in attendance and would be willing - you can reach me directly at emf492@nyu.edu or via these DM’s. And we have Mary Beth Pfeiffer on our list of individuals to speak to – we’ll be sure to dig into the journalism she has done.

Do you have any best resources for Lyme disease information? What would you like to see? What do you think we should be covering?
As a passionate member of this community - I’d love to hear your thoughts and how we can best serve you.

Please don’t hesitate to DM or email me if you have any questions.
Erin

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Hi everyone

Thank you for all the interest in this topic.

Just to make sure everyone knows it: tomorrow we will be at the LymeMIND conference. Are there any questions you would like us to ask the specialists who are going to be there?

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Did the conspiracy-theory types explain how the town of Lyme, Connecticut (that’s what Lyme disease was named after) get named? Hint: it was in the 1700s. My guess is that before the 1940s, people just became chronically ill and died, and in any event you didn’t have a lot of edge habitat.

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Highly recommend the podcast Patient Zero for a very thorough foundation for all things Lyme.

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@mbenjam - Thanks a ton! I’ll give it a listen today!

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Thanks for sharing @wanderer I’m having a ton of fun figuring out what is fact, fiction, and what is rooted in fact.