Note: the following transcript is a radio script and contains audio cues and other quirks (including imperfect grammar) of the medium. It may contain typos.
TQ: Are you recording?
SEB: I’m recording are you recording?
TQ: No… you’re in the recording booth!
SEB: Laughs.X
TQ: Ok Sam, are you ready for a bonus story.
SEB: I have been waiting for this story basically since you started writing the podcast.
TQ: Oh man, I hope it delivers.
SEB: Yeah it probably won’t, if the rest of the series has been any predictor.
TQ: yeah, it’s basically like no satisfactory answers, only gray area…
SEB: We should introduce ourselves.
TQ: I’m Taylor Quimby… host.
SEB: I’m Sam Evans-Brown. I’m the producer.
TQ: Here’s the story
[Music]
Hilary Waldman [14] – My name is Hilary Waldman, and I was a health writer for the Hartford Courant.
Hilary works in communications at Hartford HealthCare in Connecticut – and back in the late nineties, she wrote about a woman named Karen Vanderhoof-Forschner.
Hilary Waldman [20] - Karen had a very disabled baby who was born with devastating disabilities. He was blind, I think he was deaf, I think he couldn’t eat without a feeding tube… Looking back, on her pregnancy, she began to think about being sick, and her animals were sick.
TQ: During pregnancy, Karen’s joints ached… her golden retriever was having seizures… the cats were throwing up a lot.
SEB: And she believed this was all related?
TQ: Yes. She read something in a book, and she was starting to think… this sounds like Lyme disease.
Hilary Waldman [22] - You know I guess I’m going to say that she self-diagnosed herself, and then she attributed her baby’s difficulties to her infection with Lyme.
TQ: And I think we should say, right here at the top, that while we do not and can not know what caused her child’s birth defects, the problems he had… aren’t really what we think of as Lyme disease symptoms.
SEB: But isn’t it possible that if she had Lyme when she was pregnant…
TQ: Yeah, but this is an area that needs a lot more research, but essentially, the studies that have been done have not found any clear link between birth defects and having Lyme while pregnant.
Anyway, in the late eighties, Karen sent blood from her and her son to a lab, that indicated that they had at some point been exposed – that they did have some antibodies to Lyme. And for Karen this was a total confirmation of her theory.
Shortly afterwards, Karen and her husband made advocating for more research and awareness about Lyme disease a personal mission. They launched an official non-profit, and ran it from their basement... a non-profit that would come to find itself in the eye of the Lymeworld hurricane…
It was called the Lyme Disease Foundation…
[Clip] Karen Vanderhoof-Forschner: We’ve had, at the foundation, 30,000 inquiries in this past year. We consider it serious, we think that the media has done an excellent job… [fades down]
[p0 theme music]
Taylor Quimby: The narrative of Lyme disease has been a hotly contested battleground. Patients, advocates, and researchers are all trying to control perception of the disease – but in the public square it’s not just about having the facts, it’s how you present them that counts.
This isn’t just a good yarn.
This is Patient Zero. [mux]
Hilary Waldman [24] – Well she was very tenacious. She kind of put herself at the table....
TQ: As head of the Lyme Disease Foundation, Karen Vanderhoof Forschner got herself invited to scientific conferences, and panel discussions…
Hilary Waldman [24] - … she was also very politically savvy, she got connected with some people in Washington including Senator Joe Lieberman.
TQ: She was also able to recruit prominent members of the scientific community – Willy Burgdorfer, who first discovered the Lyme spirochete, was on the board of the foundation – Alan Barbour, who first isolated it, was a scientific advisor.
And all along the way she was using her personal story as this attractively tragic as an opening anecdote… as a way to attract attention from the media and others...
This is a clip from a CBS report in 1988, the year the foundation was started.
Clip: CBS Richard Roth [59] – His parents spent two agonizing years trying to convince experts for a disease that few had even heard about.
Karen Forschner - I hope it turns out his hearing is normal, I hope he has normal eyesight. I hope that someday he’ll be crawling and sitting and walking. I hope he doesn’t die.
Richard Roth: Simple hopes. And it didn’t have to happen. Richard Roth, CBS News
[Music]
In the early 90s, Karen’s son, Jamie, died at age six.
And her campaign continued… even though members of the medical establishment began to push back on some of her ideas...
Hilary 30 – Whether or not you agreed with her approach to treating it or not, she certainly was a great face of Lyme disease.
56 – Vanderbilt [long clip]
[mux]
SEB: So I get the feeling that things are about to go sideways...
TQ: Well, for a while Karen’s star continued to rise. She and her husband even got to nominate Joe Lieberman during the state democratic convention in 1994. The foundation managed to secure a $75,000 dollar grant from the CDC to create educational materials for health care providers on Lyme disease.
But in 1997 – Karen acquired an enemy.
17 – It might have been McSweegan… who said look at the Lyme disease foundation.
Edward McSweegan was a microbiologist, working at the National Institutes of Health. For a time, he had been the NIH’s temporary Lyme disease program officer.
18 – His parents had a summer house in the Lyme area... and I think he called us, because he was a very credible whistleblower.
[Music]
Edward began to blow the whistle on the Lyme Disease Foundation: he said they had a habit of trying to push bad science towards publication – a problem that prompted Alan Barbour to leave the organization as scientific advisor.
He said they pushed treatments that most experts don’t recommend: treating everyone who’s bitten by a tick with antibiotics, treating all Lyme cases with longer courses of antibiotics, using long courses of intravenous antibiotics for any case of Lyme that had taken a while to diagnose.
He said they were also haggling with the CDC over drafts of the educational materials they were being paid to produce – inserting claims not backed up by science. Another poster they had made for the NIH was scrapped for the same reason.
Lastly, Karen and other members had long made a point of calling out conflicts of interest in the mainstream medical community – where doctors are paid by insurance companies to review coverage guidelines. But he said The Lyme Disease Foundation was guilty of a similar conflict of interest – receiving tens of thousands of dollars from companies that sell intravenous antibiotics.
But Hilary also finds out that, even before McSweegan called the press, there was this whole backstory, between him and Lyme Disease Foundation.
42 – He was very upset some of the things they were saying and doing, and he decided to take it upon himself to try and discredit them. He was a passionate guy.
But McSweegan’s “passion” had landed him in hot water. By the time he reached out to Hilary, disagreements between him and the Foundation led his bosses to shift his duties, and he was told not to involve himself in Lyme disease anymore.
SEB: Wait… what did he do? What does that mean, exactly?
TQ: Well, this is the part that’s really hard to say. The more I read about this, the less certain I was of what this story really was: was this an instance of a whistleblower calling out the fact that government money was being spent on a group pedaling unproven treatments and shoddy science… or something else?
4 3 – The reason he got in trouble because he used his PhD credentials and govt title to try and accuse the Forschner’s of promoting bad science.
SEB: It sounds like he had decided to wage a kind of… personal war against Karen and her foundation?
TQ: Or at the very least to bird-dog them… call them out at every turn. And after a couple of years, there was an embarrassing revelation:
45 – He was suspended for two weeks without pay for among other offenses, for sending email messages from his home and work computers, raising questions about the Lyme disease foundation… one message contained a skull and crossbones and called the foundation, quote whacko. That’s a quote from my story.
It was while he was on that two-week suspension that he went around the NIH… started reaching out to the press.
SEB: So you’re confused about this story, because if in one version of this story McSweegan is a good government whistleblower… in the other version he’s… what… just kind of a jerk with a vendetta?
TQ: Let me put it this way: Karen and her husband were definitely well-meaning campaigners… they had lost their child. I think in hindsight, maybe they shouldn’t have been the lead anecdote in some of these media stories… but at the time they gave the media a big scoop and here’s McSweegan, calling them whackos… Thomas Forschner, her husband, was quoted calling him a “stalker”
SEB: It’s just not a good look for a government scientist.
TQ: Right, it’s clear that he’s being aggressive. And in response to the whacko comment that got him suspended the Forschners asked the NIH to make it up to them by honoring them with an award, a ceremony and a plaque.
SEB: hmmm… that feels a little… I mean it feels like they were exerting a kind of power over the NIH.
TQ: Yup. And the impression you get reading these articles is that this was a big thing. A number of scientists expressed real concern about the precedent – that the NIH is being pressured to honor an advocacy group with a bad history of dodgy claims…
SEB: So it became a real firestorm.What happened in the end?
TQ: The NIH caved… they gave the Forschners and the Foundation the award. In the press McSweegan’s boss downplayed the significance. “It’s just a stupid lucite plaque,” he said. Like, who cares.
Eventually McSweegan’s anti-Lyme-Foundation activism got him totally sidelined at work. He wasn’t fired, but he claimed that one-by-one he was relieved of his duties, until he literally had nothing to do at work.
SEB: Like what he was just coming into the office and playing solitaire each day?
TQ: He told 60 minutes that he had literally gotten a gym membership, and was going to the gym everyday just to break up the boredom .
SEB: Huh. Ok so now I’m feeling like McSweegan got screwed just for trying to stick up for the truth.
TQ: Well… truth… ok let me get to why I really wanted to tell this story. Edward McSweegan declined to be interviewed for this podcast, but to me he actually represents the way SOME in the scientific establishment have come to represent a different kind of ideological entrenchment. And to demonstrate that you just have to go to his twitter feed:
SEB: So what am I looking for here?
TQ: Here’s one: “Senator Charles Schumer, a survivor of Lyme disease. That’s like being a survivor of an ear or sinus infection.”
SEB: Yeah. Okay. So what you’re saying here is that he has become so radicalized against the Chronic Lyme community, that he is now incredibly dismissive of Lyme disease… so dismissive that he’s also not being strictly scientifically accurate.
TQ: Exactly. Like, I don’t know if the real reason McSweegan basically lost his job was because he was just being a big jerk, but I do know that Lyme disease is more serious than a sinus infection, and also that we don’t fully understand it… there are big open questions about what it does to your body, versus sinus infections which… well I think we’ve got a pretty good handle on. Listeners feel free to email me if otherwise…
SEB: The sinus infection society of America is gonna be like, “What?!”
TQ: I don’t know… there’s probably… there are chronic sinus infections now that I think about it...
SEB: So, I’ve got a story. I have an acquaintance, who I won’t name but who is studying to be a doctor here in the Northeast… he’s currently a resident. And he told me about how, when he was just starting his latest rotation, he got this whole briefing on Lyme disease. And meanwhile the doctor who was supervising him was kind of just rolling his eyes, and afterwards pulled him aside afterward, and was like: “let me tell you what’s really going on with Lyme Disease,” and this supervisor told this budding doctor, that 90% of the patients who self-diagnose with Lyme don’t have it and that you should not believe any of them.
TQ: Huh… You know it’s funny, because one thing you’ll often hear in Lymeworld are problematic comparisons – why Lyme is worse than cancer, or should get as much funding as AIDS or more. Both of which are objectively not true… right? I mean, AIDS alone kills almost a million people EVERY YEAR. And while Post Treatment Lyme is maybe debilitating, and there are serious reasons to talk about it, the disease is RARELY fatal.
But what has been happening now for years, is that the medical establishment’s response to the Chronic Lyme community, has also become an unsympathetic eyeroll… and that approach, which I think McSweegan embodies… actually stokes anger towards conventional medicine. Like your average person often doesn’t know the difference and is going to be like… these guys sounds like jerks.
SEB: Right… and this, you know, Lyme Literate doctor, is treating me really nicely, and listening to me… so this drives towards fringey providers… untested treatments...
TQ: And more to the point, if this is a communications strategy, I don’t think it works. So after he blew the whistle on Karen, funding for the Foundation actually sort of did dry up. But she has launched a new organization, and has remained a powerful voice on Lyme. Just a couple of years ago, she was part of a federal group — the Health and Human Services Tick Borne Working Group — which was making recommendations about Lyme disease research.
SEB: And McSweegan?
TQ: He wasn’t at the table… he was tweeting