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How an Alzheimer’s ‘cabal’ thwarted progress toward a cure

statnews.com

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Re: How an Alzheimer’s ‘cabal’ thwarted progress toward a cure

#271

Post by anigbrowl »

dang wrote: post #222
svara wrote: post #100

A super interesting article, but the title is pure clickbait. In this day and age, feeding into the narrative that science is just another competitive team sport where people compete with whatever means necessary is downright dangerous. Reality is much more nuanced, and the article actually does a good job of detailing that. In some sense this all started from the very beginning, from when Alzheimer's disease (AD) wa…

What's a better title? We can change it. Better = more accurate and neutral, using representative language from the article.

I really think it's better to defer to the original authors or the submitter on titles. Retroactive title changes have become common on HN and they're somewhat annoying. Certainly the original title upset some people, but perhaps that is a conversation worth having; Statnews isn't a frivolous news outlet, and the revised title elides the intradisciplinary conflict at the heart of this story, creating the impression that researchers in that field had moved toward some other consensus (which does not appear to be the case).

Re: How an Alzheimer’s ‘cabal’ thwarted progress toward a cure

#272

Post by scarejunba »

allovernow wrote: post #31

>scientists whose ideas fell outside the dogma recounted how, for decades, believers in the dominant hypothesis suppressed research on alternative ideas: They influenced what studies got published in top journals, which scientists got funded, who got tenure, and who got speaking slots at reputation-buffing scientific conferences Not quite in topic, but Is it really such a stretch to acknowledge that the same forces i…

There are sufficient resources for alternative research into climate change to flourish. In the end, those who control the money control the studying, and there are enough people who control money who want the other part studied.

Re: How an Alzheimer’s ‘cabal’ thwarted progress toward a cure

#273

Post by scarejunba »

wavepruner wrote: post #269
OGWhales wrote: post #257

Earlier quoted context omitted.

Care to share further? You have sparked my curiosity.

Going into details will just invite more down votes. You can look through my older posts if you really want to know. I talked about it a bit when I first created this account.

Fine. I looked.

Chronic Fatigue Syndrome treated by chelation therapy. His hypothesis is that mercury poisoning caused it.

OP is not an anti-vaxxer but was accused of being one because they blamed mercury.

OP also had bone fractures and fascia disintegration.

OP also had tense forearm muscles (?) described as 'rock hard' due to RSI.

I don't know why you're being so vague about it. It's likely you're being downvoted for the vagueness rather than anything else. Still, he has an email listed if you're curious.

Re: How an Alzheimer’s ‘cabal’ thwarted progress toward a cure

#274

Post by Retric »

RobertRoberts wrote: post #261
Retric wrote: post #96

Earlier quoted context omitted.

You can’t simply join scientific debate while ignoring the existing findings. Genetics and race are almost completely unrelated with black in America including people that 7 out of 8 white great grand parents. So, arguing your measurements are of genetic differences needs to account for such non biological social constructs. Good faith research can follow the social construct of race, but it needs to address that ele…

I wasn't addressing a specific instance or issue. I was just pointing out that we must all be willing to both prove others wrong and be proven wrong or we can never correct anything. And, we must all be willing to accept and work with the difficulty this causes for many people. But we must never, ever stifle speech because it's upsetting or we disagree with it. At the very least because the pendulum swings and any op…

That’s the point I was addressing. It’s not the responsibility of the scientific community to pay attention to everyone. The threshold of communication is an awareness of the fields existing models and results.

Getting published in a reputable journal is generally a low bar and probably a good yardstick for joining the conversation. That might seem excessive, but it drastically improves the signal to noise ratio and frankly works.

Now, complaints after that point are reasonable, even Einstein disliked QM. However, eventually the old guard dies and new people are willing to consider new idea at which point science marches on.

Re: How an Alzheimer’s ‘cabal’ thwarted progress toward a cure

#275

Post by aaron695 »

JackFr wrote: post #180
aaron695 wrote: post #114

Earlier quoted context omitted.

> There was, however, no conspiracy or "cabal". These were simply people who were convinced they were on the right track. No one thought the weapons of mass destruction were fake and lied and said they were real. The conspiracy was "These were simply people who were convinced they were on the right track." so did not allow competing theories. Exactly the same with the VW emissions issue. This is exactly how conspirac…

> This is exactly how conspiracies and cabals work. They are emergent behaviour. No, conspiracies and cabal are by their very nature intentional. Groupthink https://en.wikipedia.org/wiki/Groupthink is a much better term for describing an emergent dysfunctional decision process brought on through social dynamics.

No, definitely not Groupthink. It's open behaviour.

It's really hard to find non-fiction examples of cabals, but when applied to real life I stick with they are almost always emergent behaviour.

I would have thought the Phoebus cartel is an example of a cabal, but it seems Google doesn't agree.

But it's an example of progress kept back from emergent behaviour.

There's a reason there's two memes attached to Phoebus cartel, 1. They stopped long lasting light bulbs, 2. Actually long lasting light bulbs burn to much electricity.

The emergent behaviour from 2. caused 1. which made them more money.

This is not Groupthink.

Re: How an Alzheimer’s ‘cabal’ thwarted progress toward a cure

#276

Post by kd0amg »

knzhou wrote: post #232

Whenever you hear about science being a "cabal", you have to remember that there's a huge survivorship bias. At any moment in science, there are a few dominant hypotheses, which seem to work pretty well, and hundreds of alternative hypotheses, with only vague evidence in favor of them. The vast majority of alternative hypotheses turn out to be completely wrong, and the researchers pushing them are forgotten. The few…

The few that turn out to be right get funding and recognition, exactly as many of the researchers mentioned in this article are getting now.

Some of the ones that are right eventually get funding, as long as their proponents stick around long enough and produce enough results to convince someone to fund them. On the time scale this article talks about, I'd expect a quite a few people who had ideas worth looking into gave up and went off to do something else instead.

Re: How an Alzheimer’s ‘cabal’ thwarted progress toward a cure

#277

Post by kd0amg »

if alternative ideas received little funding support, it was because NIH’s Alzheimer’s budget was woefully insufficient ($425 million in 2012, $2.4 billion in 2019)

low NIH funding for Alzheimer’s from the 1980s through the 2000s is to blame for alternative ideas languishing

This seems like a hollow excuse. AFAIK, NIH doesn't have a mandate to put a certain amount of funding towards one line of inquiry before funding another.

Re: How an Alzheimer’s ‘cabal’ thwarted progress toward a cure

#278

Post by Aqueous »

internet_user wrote: post #244
wavepruner wrote: post #226

Earlier quoted context omitted.

"I suspect this dynamic is not limited to Alzheimer’s research." Agreed, I think it is a universal problem in science. I have an illness that has been curable for decades now, but this cure is treated with hostility by the medical establishment. I look forward to the day when the cabal of my illness collapses. Hopefully then I will be able to talk about what happened without people getting angry.

Lyme? You were able to clear long-term post-lyme with i.v. abx? I am interested to hear what you have to say.

i was able to clear it with long term abx but they were not iv - iv exacerbates matters for me (still not sure how). the cocktail that worked for me was long term Biaxin (claritbromycin) accompanied by Plaquenil (hydroxychloroquine). i have gotten better from severe neurocognitive Lyme (encephalopathy) from this cocktail twice now, and the one time i went off of it i relapsed within 1 - 2 months. i can’t explai. why it works, but i am fairly good evidence that it does.

sadly there is still a lot of hostility to even this treatment due to hesitation around long-term antibiotics, and recovery takes months - making it difficult to observe. and i think only a few doctors are aware of it as an option.

Re: How an Alzheimer’s ‘cabal’ thwarted progress toward a cure

#279

Post by aaron695 »

greglindahl wrote: post #185
aaron695 wrote: post #114

Earlier quoted context omitted.

> There was, however, no conspiracy or "cabal". These were simply people who were convinced they were on the right track. No one thought the weapons of mass destruction were fake and lied and said they were real. The conspiracy was "These were simply people who were convinced they were on the right track." so did not allow competing theories. Exactly the same with the VW emissions issue. This is exactly how conspirac…

I thought we were talking about science, not spycraft or non-independent emissions testing? An independent science lab causd the VW scandal by publishing independent measures of emissions. That's one way the process of science corrects itself.

What veterinarians know that physicians don't - https://www.ted.com/talks/barbara_natterson_horowitz_what_ve...

Not totally sold on the meme, but looking at crossovers between disciplines is a thing.

Although I'd argue it's all under anthropology in this case.

Re: How an Alzheimer’s ‘cabal’ thwarted progress toward a cure

#280

Post by RobertRoberts »

Retric wrote: post #274
RobertRoberts wrote: post #261

Earlier quoted context omitted.

I wasn't addressing a specific instance or issue. I was just pointing out that we must all be willing to both prove others wrong and be proven wrong or we can never correct anything. And, we must all be willing to accept and work with the difficulty this causes for many people. But we must never, ever stifle speech because it's upsetting or we disagree with it. At the very least because the pendulum swings and any op…

That’s the point I was addressing. It’s not the responsibility of the scientific community to pay attention to everyone. The threshold of communication is an awareness of the fields existing models and results. Getting published in a reputable journal is generally a low bar and probably a good yardstick for joining the conversation. That might seem excessive, but it drastically improves the signal to noise ratio and…

I don't disagree, but that is not the point I was addressing. I was addressing this:

>"...a cloak for agendas..."

Even if some people have an agenda, not everyone does. And this excuse is often used to stifle discussion.

The most prominent one is "you aren't a scientist, therefore you have an agenda".

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