shoddy journalism. dangerously shoddy. when people’s lives on the lines, we all deserve better reporting.
this is what I can note just off the top of my head and not reading the whole thing because it’s so infuriating:
1) Steere didn’t discover Lyme disease. He noticed a pattern and thought it might be tick-borne. The reason that the bacteria is called borrelia burgdorferi is because the disease organism was actually discovered by William Burgdorferi. It’s no accident that Steele doesn’t credit him. Burgdorferi went on to refute Steele’s future work because his studies were deeply flawed.
2) Steere had gotten a star status and was fawned over by the establishment, but the studies have been shown again and again to be flawed. The piece never mentions the fact that many, many scientists have shown how flawed Steele’s studies are. Nor does it mention that there was a recent study done by people on both sides of the chronic debate, in which it was shown that people who had been diagnosed with and treated for Lyme were the only ones with a particular combination of two anti-neural proteins. (an auto-immune dysfunction. these proteins attack one’s own healthy nerve cells.) clearly, there is a chronic condition that can emerge from having Lyme. 2) they never mention neurologic lyme. I well-documented manifestation (see the Columbia University Lyme Research site) and how, a short course of antibiotics might work when you catch it early, it is far more persistent when you don’t catch until it is in the neuro-stage. (I don’t necessarily advocate long-term antibiotics, but I do know that Lyme can be chronic.)
3) The panel which reviewed the IDSA guidelines was NOT AT ALL impartial. The person leading the panel was a past board member of IDSA (maybe even President?) and all the members were handpicked by the IDSA. An independent panel should have been chosen by people who were not related to IDSA and no members of the panel should have had past connections to IDSA.
ugh…. the continued hero-worship of this guy who did do something admirable in the 70s, but then his ego got in the way, is dangerous. people’s lives are ruined because he leads a powerful group of people whom the insurance companies turn to to justify denying treatment to patients. patients then end up simply suffering or seeking care on their own, which is often leaves them susceptible to hucksters or well-meaning practitioners who simply don’t have the knowledge of Lyme to treat it appropriately. As a simple example, Lyme patients need to stay away from steroids. Steroids will actually trigger an increase of the Lyme bacteria production. Last year, a friend of mine, desperate for help after being denied treatment by most doctors, found a doctor who thought he could help her chronic inflammation with steroids. Soon, after starting them – within days – she was in such misery, she committed suicide. It has simply been too long and painful a journey, but the steroids not only triggered more Lyme symptoms, the hyper-emotional state which results from steroids made it impossible for her to regulate those emotions of hopelessness. People die because this man is part of the good old boys network and sits on high dictating how the medical establishment will test, diagnose and treat Lyme. I don’t care how quiet his voice is. Sociopaths are very calm when they hurt other people. It’s called lack of empathy. I’m not saying he’s a sociopath. I’m saying that this presentation of him as some Zen master is being used to present him as infallible and above the fray.
Why don’t they ask him if he’s still working on a vaccine? Does anyone look into whether he has financial interests?
Look at the numbers. Right in the article it talks about how 20k-30K new cases of Lyme will be seen in MA this year. Yet, only $60k for research is allotted. Meanwhile, $10mil research for a disease that we might see one or two people per year get. Since the state won’t fund research, it has to be funded privately. Steere and his cohorts, having grabbed the limelight and garnered the prestige have a lot of influence over how private research funds are used when it comes to Lyme.
Power corrupts. Steere may have been a young, well-meaning doctor when he got involved and pointed the way to discovering Lyme disease. Once someone has power via wealth, prestige, influential positions, or whatever, the need to maintain those things for oneself corrupts one’s service. This constant act of deference to the powerful and suspicion of the vulnerable, rather than the other way around corrupts everything in society. It’s a social habit I can’t get my head around. History has repeatedly shown that deference to power is highly destructive. Yet, we don’t seem to be able to stop ourselves. The story of the Lyme controversy in the United States and the way it is reported in the Globe is simply another example. Why do we repeat history over and over and over? I have yet to see how we will end this cycle.
Meanwhile, on this one little front, many hundreds of thousands of us suffer.