Comment by kortex | Hacker News Reader

Comment by kortex | Hacker News Reader

Graveyard of "not considered a real/serious disease/threat by the medical consensus until a frankly embarrassingly amount of time later"

[x] "cadaverous particles" (washing hands after autopsies)

[x] "hysteria" (likely a combination of various mental health conditions and/or PCOS, polycystic ovarian syndrome)

[x] "GRID" (HIV/AIDS)

[x] leaded gas bad

[x] asbestos bad

[x] smoking bad

[?] refined sugar bad

[x] Autism

[x] ADHD

[x] COVID-19 (from ??-2019 until Feb/Mar 2020)

[ ] chronic lyme/other tickborne illness

[ ] ME/CFS

Hopefully, the skyrocketing case load of the latter two (due to explosive spread of tickborne illness, and "long covid", respectively ) will get the gears actually turning and change consensus.

I don't get what's wrong with the medical community acknowledging "hey we have all these odd cases, we can't pin down a cause, but here's the leading theories." Instead, just look at the "Myth/Fact" thread elsewhere in the comments here. Stating with such authority "antibiotics totally cure Lyme". Since when is anything in medicine a sure bet? You're telling me it's impossible that an evolving lifeform can't possibly evade the immune system and selection pressure and become persistent? What?

Ok, please rebut me, tell me how this line of reasoning, "these currently 'orphan' diseases deserve taking a closer look, and not dismissed out of hand" is wrong.

“Chronic Lyme” is a very challenging topic because it has become a mix of legitimate symptoms (those suffering post-treatment Lyme disease) but also a pseudoscience catch-all diagnosis promoted by bad alternative medicine practitioners.

Contrary to popular belief, the CDC and medical community do actually continue to research the topics of potential Lyme persistence and post-treatment Lyme symptoms. We’re discussing this under the headline about a new Lyme disease vaccine, aren’t we?

However, there is also an out of control pseudoscience/quackery community that has attached itself to Lyme as the go-to explanation for unexplained symptoms. They’re drawn to the theories of Lyme persisting in undetectable ways, which they use as an excuse to diagnose people by vague symptoms alone. There are now a number of well-known scam Lyme disease labs that claim to use proprietary techniques to identify Lyme disease that the reputable labs can’t catch. Virtually everyone who submits a sample to these scammy labs comes back with a “positive” result.

I once tested positive for Lyme using the CDC criteria from a reputable mainstream lab. The specialists I saw did not mess around with treatment as well as follow up, but they did go to great lengths to ensure I wasn’t trying to get in with a pseudoscience or self-diagnosed “chronic Lyme” case. One of them explained that she was inundated with appointment requests from people who self-diagnosed as “chronic Lyme” after reading Internet forums despite multiple negative test results and refused to believe any other explanation. The “chronic Lyme” online communities are a terrible mess of misinformation, but the actual medical community around Lyme treatment is quietly continuing to do good work. It can be difficult to separate the two from the outside due to all of the noise made by the pseudoscience quacks that have attached themselves to the topic.

That's fair. But I'd rather humor the quackish side of chronic lyme and see some progress being made, rather than lean to the side of dismissing them, along with people with legitimate complaints.

The inability to adequately assay Lyme speaks more to how bad we are at assaying diseases, than to the (il-)legitimacy of the disease.

> But I'd rather humor the quackish side of chronic lyme and see some progress being made,

That would have the opposite effect, because many (or likely most) of them never actually had Lyme disease.

That’s the problem: “Chronic Lyme” has attracted too many pseudoscience practitioners who lazily blame everything on undetectable Lyme. They diagnose based on symptoms alone and/or employ tests with known extreme false positive rates while dismissing mainstream tests that have been validated.

The more you mix those false patients into the real Lyme population, the more you dilute the real signal from actual patients.

Humoring the quackery doesn’t advance the science.

If you want progress to be made in a field, it’s important to be diligent about keeping the quackery out.

The issue with humoring the quackish side of chronic lyme is that you swiftly get into supposed treatments that are, in fact, quackery or can be actively harmful to patients (such as extremely long antibiotic treatments). So you risk both wasting money and harming people by humoring stuff you know is nonsense.

A lot of it is just science catching up to what is observed in the real world. I agree that many practicing doctors are operating on out-of-date knowledge, so if you happen on one of those and start talking about CFS, you might not get a positive reaction. Isn't it the same as unknowingly hiring a bad contractor, though? Doesn't mean that the engineering community is not trying to find more efficient and better ways of construction. CFS is a recognized disorder by the medical community, although the causes are unkown. That is not surprising considering the complexity of the human body.

Tick-borne illnesses are talked about a lot in Europe, ever since I was a kid (~20 years ago). Can't say I have received much conflicting information in all those years.

> CFS is a recognized disorder by the medical community, although the causes are unkown.

My point was, it wasn't even a recognized disorder until fairly recently. As I understand it, part of the problem is a cottage industry of quackish medicine sprung up around the unfalsifiability of chronic Lyme and CFS. But instead of the medical community taking an agnostic stance "we see you are suffering but we can't explain it", there was a strong push in the opposite direction, asserting that it's psychosomatic / "only in your head" / "here's some antidepressants." And you see this pattern again and again. I think the dismissive attitude is starting to abate among the younger medical professionals but you still see this air of "anything I wasn't trained on isn't a thing" among many of them.

Right, I understand your point better now and agree. I'm not sure what medical training consists of today, but improvement on this issue should start there.

> there was a strong push in the opposite direction, asserting that it's psychosomatic / "only in your head" / "here's some antidepressants."

As a counterpoint to this, my first exposure to chronic fatigue syndrome came while I was dealing with depression and getting psychotherapy for the first time. CFS popped up in the news, and a friend guided me to a web forum where I'd get the "unfiltered" version from people who suffered from it. What jumped out to me about that community, given my struggle with depression at the time, was that it was a cesspool of stigma against mental illness. The experiences people reported varied over a wide spectrum, but there was a significant contingent of people with classic symptoms of depression along with the vague physical complaints that most people have, outraged that doctors would be so insulting as to suggest depression or other psychological explanations. If there was one belief that united the community, one shared credo, it was that they deserved a physical diagnosis because their dignity required it, and they would not accept a psychological diagnosis because it would render them unworthy of sympathy. One person summed up the consensus succinctly by saying it was an outrage for doctors to suggest that they were "just too lazy and too stupid to get their lives together." That was unwelcome, but valuable, confirmation of how some people saw depression, and it made me more guarded about when and how I talked about it.

So it cuts both ways. I'm sure there are doctors who arrogantly label any patient they can't figure out as "crazy," but I'm just as sure there are patients who overreact, angrily, to any mention of psychological causes or treatments.

Isn’t Hysteria the other way round than those other diagnoses on the list? It used to be diagnosed but since doctors don’t believe in it anymore.

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