How an Alzheimer’s ‘cabal’ thwarted progress toward a cure • Hacker News Board

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

#321

Post by sampo » Tue, Dec 31, 2019, 3:04 AM UTC

zosima wrote: post #93

The article is not quite updated. Biogen did end their phase 3 trial of the amyloid-beta antibody Aducanumab early, citing lack of efficacy. A closer look at the numbers however appeared to reveal that they shouldn't have. And Biogen is now filing Aducanumab for approval by FDA. [1] All in all, there is no question that amyloid-beta is a key part of Alzheimer. Already Alois Alzheimer, when first describing Alzheimer'…

> All in all, there is no question that amyloid-beta is a key part of Alzheimer.

You are responding to an article that very much puts it into question. You should read the article, it's not long. But it'll give some quotes:

“The amyloid hypothesis has been one of the most tragic stories [in] disease research,” said neurobiologist Rachael Neve of Massachusetts General Hospital.

And

Making it worse is that the empirical support for the amyloid hypothesis has always been shaky.

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

#322

Post by dang » Tue, Dec 31, 2019, 3:05 AM UTC

sillysaurusx wrote: post #35

The truth has a habit of shining through if you are encouraged to keep asking questions and follow up on them. The point is that people are actively discouraged from asking questions and following up on them. People lose their careers and livelihoods for asking the wrong sorts of questions. Truth is no barrier to social backlash. In fact, questions that might be true tend to be the ones that get people the most heate…

"Eschew flamebait. Don't introduce flamewar topics unless you have something genuinely new to say. Avoid unrelated controversies and generic tangents."

https://news.ycombinator.com/newsguidelines.html

We detached this subthread from https://news.ycombinator.com/item?id=21911548 and marked it off-topic.

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

#323

Post by [deleted] » Tue, Dec 31, 2019, 3:05 AM UTC

sillysaurusx wrote: post #35

The truth has a habit of shining through if you are encouraged to keep asking questions and follow up on them. The point is that people are actively discouraged from asking questions and following up on them. People lose their careers and livelihoods for asking the wrong sorts of questions. Truth is no barrier to social backlash. In fact, questions that might be true tend to be the ones that get people the most heate…

[deleted]

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

#324

Post by treeman79 » Tue, Dec 31, 2019, 3:08 AM UTC

nextos wrote: post #318

treeman79 wrote: post #317

Earlier quoted context omitted.

Old Nero-ophthalmologist diagnosed me with Sjogrens because I mentioned my symptoms always improved for several weeks following a round of antibiotics. He has noticed that’s a common trend in Sjogrens patients. He’s never heard of the marshal protocol, just something He had noticed. Can’t find a single doctor that will take the infection theory seriously. a Year later I can’t get a prescription to even try it. My vit…

As shown in my references above, Ro60, a potentially causal autoantigen for Lupus and Sjogren's has been linked to commensal bacteria. The study is published in Science Translational Medicine , which is a high end journal, and quite conservative. Plus other studies have reproduced equivalent results. So these doctors should both update their knowledge and also give you the benefit of doubt. There is a growing network…

Hmm. Been avoiding vit D. But really unsure if that’s a good idea or not. Have a bottle of it on counter.

Thanks for the information. Will research that protocol.

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

#325

Post by dhimes » Tue, Dec 31, 2019, 3:13 AM UTC

knzhou wrote: post #231

dhimes wrote: post #52

Earlier quoted context omitted.

This is an extremely important point. Since I was a grad student, there have been at least 5 monumental "findings" in physics: 1. A spinning top weighs less if it spins one way than if it spins the other 2. A "fifth force," IIRC it was linked to baryons 3. The climate is warming, not (as people thought) cooling 4. Superconductivity can be achieved at high (liquid Ln2) temperatures 5. Fusion can be achieved at low (ro…

Despite what you may hear in breathless news articles, there was no point at which a substantial number of physicists believed (1), (2), (4), (5), (6), or (7). In some cases it was basically 99% against. People weren't rushing to "confirm" these findings, as if they were true by default -- they were rushing to check them, which is extremely different.

Lol. You're splitting hairs: confirm/check/verify all mean the same in this context. It was exciting, controversial and thrilling. I was there.

Of course the default mode was skepticism. Even for (3). But you are fooling yourself if you don't think these things were the main topics of conversation. It had a lot to do with the reputations of the scientists involved. Fleishman and Pons were very well respected, for example, so while people question how they lived through the experiments (based on expected byproducts), they were pretty sure something new must be going on.

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

#326

Post by wtallis » Tue, Dec 31, 2019, 3:21 AM UTC

wavepruner wrote: post #320

wtallis wrote: post #301

Earlier quoted context omitted.

> The only tool an average person has to determine an idea as truth or fiction is whether it lines up with the current professed norms; so for a technical forum like HN ideas that disagree with the standard research position can only be ignored due to lack of evidence. The manner in which someone presents their ideas is a decent secondary indicator. Common red flags include being evasive about what disease they're re…

Thank you for the feedback regarding how I come across. Next time I will try to include more specific detail in the OP that hopefully does not upset people. I've found that a vague introduction protects me from down-votes, but perhaps there is a way to talk about some details without that happening. The illness is chronic mercury toxicity and the treatment is chelation therapy. I know a man who reversed his dementia…

You're really not helping your case by citing two people who come across as even more shifty. Piling on more low-quality evidence like this just raises more questions and doubts, and gives the impression that you either cannot identify credible evidence or that none exists.

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

#327

Post by mikekchar » Tue, Dec 31, 2019, 3:36 AM UTC

patmcc wrote: post #262

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.

How does the medical establishment benefit from not curing your illness?

Having experienced something that seems to be similar, imagine that you are working on a web server. It is very slow sometimes. Your project leader is absolutely convinced that the problem is due to multiple requests being made to the DB at the same time. He has been lobbying to rewrite the DB layer for some time now. He hates the archetecture that was left to him by the previous lead developer and is absolutely sure that if he rewrites it, it will be much faster and easier to work with.

Unfortunately, you've been profiling the code and you've found that the there is an inordinate amount of time being spent allocating a date. It seems like the code is pathologically looping around and hitting that date code hundreds of thousands of times for every request. You've tried showing your lead the code that's causing the problem. He doesn't really understand it. He doesn't trust code profiling either. He already knows what the problem is and he's not interested in hearing any more. He ridicules you for having this stupid theory that allocating a date is slowing down the DB.

It's not that keeping the poor behaviour is benefitting him in any way. It's more that the new solution is not his solution and he's got a lot riding on his solution being chosen (justify his code rewrite). He's kind of staked his reputation and career with the company on his solution. If it turns out to be something else -- especially something he's already ridiculed, he'll be toast. He wants to get into management and management is all about politics and being right all the time (ever hear the President say, "Wow. I was certainly wrong about that!" -- and you can pretty much insert just about any President there... not just the obvious one ;-) ).

That's the way I see it anyway. Doctors, just like computer programmers work with complex systems where they are more likely to be wrong than right. I never trust people in these positions who don't know how to be wrong. But they/we are often placed in positions where we are not allowed to be wrong -- and some people handle those situations better than others.

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

#328

Post by alpineidyll3 » Tue, Dec 31, 2019, 3:55 AM UTC

Perhaps the most pernicious example of a common dysfunction of the grant system and entrenchment of power in old faculty.

We hired a friend of mine exclusively to study amyloid beta spectroscopy. He was aware that it probably didn't explain the pathology, but how else would he get a job?

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

#329

Post by roywiggins » Tue, Dec 31, 2019, 4:25 AM UTC

a1369209993 wrote: post #288

scarejunba wrote: post #273

Earlier quoted context omitted.

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 f…

> was accused of being [an anti-vaxxer] because they blamed mercury. What the fuck do those even have to do with each other? Also, upvoted for actually posting object-level claims rather than whining about downvotes.

There's definitely a crackpot subgenre of selling people on expensive chelation that they don't need. The idea of "cleansing" and "detoxing" supplements (which don't really do anything much but maybe make you poop) has bloomed into selling people chelation (which does do stuff, but only if you are poisoned by heavy metals).

It's not antivaxx, but it's antivaxx-adjacent, and awful stories like this is what people think of when someone promotes chelation against the medical consensus.

https://www.medpagetoday.com/neurology/autism/1616

That doesn't prove anything about any particular use of it, but that's why people can get very angry when it comes up.

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

#330

Post by crimsonalucard » Tue, Dec 31, 2019, 4:57 AM UTC

wavepruner wrote: post #226

cockatiel_day wrote: post #187

This article is 100% true. My first job out of college 10 years ago was in a lab focused on Alzheimer’s research. Our Principle Investigator made an art of writing grant applications for studies that would appear to be in line with mainstream theory, but were really intended to test theories he actually thought were worth testing, presented in results as an “interesting” aside. He believed the amyloid theory had been…

"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.

I don't blame it on science. The principles of science are deliberately invented to get around this problem. Blame it on human behavior.

It's unfortunate to say that the very tenants science tries to eliminate are actually normal parts of human behavior. Our actions, logic and reasoning are dominated by emotion and an attempt to hold onto power. Status seeking and religious bias are normal parts of human behavior.

The irony of it all is that we hate this type of behavior but are seduced by it nonetheless. A good analogy is the Dark side of the force.

One thing I've seen people fall for is that they think they're immune to this bias by being aware that it exists. Nothing is further from the truth. We are all victims of bias and we are all not immune because to be biased is to be human.