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

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

#351

Post by anovikov » Tue, Dec 31, 2019, 11:09 AM UTC

scarejunba wrote: post #273

wavepruner wrote: post #269

Earlier quoted context omitted.

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 f…

What's the problem with chelation therapy? I mean, okay it might not help and hypothesis may get disproven, but why not just take it? It doesn't seem to be either very expensive or very dangerous/have very strong side effects from what i can quickly google up?

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

#352

Post by tsimionescu » Tue, Dec 31, 2019, 11:21 AM UTC

derefr wrote: post #179

leftyted wrote: post #155

Earlier quoted context omitted.

> 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. I think that narrative is correct. We can't fix the problem if we don't discuss it. The whole "I believe in science" thing (which you seem to be pushing) is really quite silly. Funding is a political game and the people who are best at politic…

You’re talking about scientific academia, not science. Much of science occurs outside of academia. Military and industrial scientific R&D, corporations’ basic-research labs, independents, etc. It’s only in scientific academia that these “strictly adhere to the popular scientific paradigm in order to get published” worries exist.

As the article explicitly shows, private medical research very much follows academic thought, because of the same incentives that makes public funding a political game.

There is in fact no fundamental difference between a manager deciding what projects to take on and a bureaucrat deciding which projects to fund from public money - in both cases, the person doing the decision is not using their own money, and they don't have the full qualification to make the best scientific decision. Even if they do, they are held responsible by people who do not (upper managers / higher level bureaucrats), who will evaluate them more on the process they followed than on actual results (especially as results are likely to be far off).

Even though 'a company is putting its own money behind the research', it's still people who don't own that money taking the actual decisions. Even start-ups are usually not using 'their own money', but investors' money, with the investors taking the role of grants approvers.

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

#353

Post by zby » Tue, Dec 31, 2019, 11:49 AM UTC

keeganpoppen wrote: post #233

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.

looks like that day isn't today, given the downvotes xD in fairness, i think people have a hard time taking claims like this seriously without a little more information, due to its superficial similarity to those of a "crackpot". (but while the _precision_ is pretty poor on the correctness of "crackpot" theories, the _recall_ is pretty much 100% ) arguably > 100%, to be a bit tongue-in-cheek

From another Hacker News discussion:

"One common theme in the chronic Lyme communities is that people who go into remission tend to attribute their response to whatever technique, supplement, or medication they were trying at the time."

https://news.ycombinator.com/item?id=21707343

Once people form a community around a particular therapy the community will never admit that the therapy was wrong.

On the other hand https://equilibriabook.com/ gives shocking examples of how the medical establishment was wrong even though all the information was available and an individual could do much better not following mainstream medical advice. That can happen when the incentives in the research institutions are misaligned.

This is a subject I also put a lot of thinking into recently:https://medium.com/@zby/rational-patient-community-6d3617dff...

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

#354

Post by zby » Tue, Dec 31, 2019, 11:58 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?

https://equilibriabook.com/ gives good examples on that.

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

#355

Post by blargmaster33 » Tue, Dec 31, 2019, 12:11 PM UTC

This is exactly what you would expect from government research.

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

#356

Post by djeyeteheget » Tue, Dec 31, 2019, 1:11 PM UTC

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

#357

Post by OGWhales » Tue, Dec 31, 2019, 1:22 PM UTC

wayoutthere wrote: post #297

umvi wrote: post #263

Earlier quoted context omitted.

It's probably one of those illnesses like cluster headaches that can be treated with a currently-illegal drug like psychedelic mushrooms.

Ketamine works wonders for them too. Clinical trials are happening for mushrooms as well.

Ketamine is already used medically, correct? I'd imagine that would be easier to push/study because of that.

Still super glad to see psychs being studied. It always frustrated me that due to scheduling in the US it was much harder to study them.

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

#358

Post by igorkraw » Tue, Dec 31, 2019, 2:17 PM UTC

lopmotr wrote: post #215

igorkraw wrote: post #190

Earlier quoted context omitted.

What controversial ideas are missing funding, which dissent is missing please? What's the bar. I'm genuinely asking constructively, because I would like to find a scalable improvement on the rather slow moving funding structure (unless driven by hype). But there are hundreds of free energy, "race realist", AGW deniers etc. being blocked by the current system, as well as genuine con men. Also, I dislike the idea that…

You have to be careful with "race realist". It can mean people who believe there is only a small number of sharply divided races, such as mongoloid, negroid, and caucasoid. But it can also be used to describe hereditarians who identify meaningful classifications of people with boundaries roughly corresponding to traditional races. Those latter ideas are quite respectable scientifically even though they're demonized i…

Can you give me some examples of mainstream geneticists (not popular, just academically accepted) which will counter h ttps://rationalwiki.org/wiki/Hereditarianism and the sources in it?

Otherwise, your comment reads to me "you have to be careful with this racist euphemism, it can refer to two different attempts of racist pseudoscience trying to appear legit"

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

#359

Post by zosima » Tue, Dec 31, 2019, 2:29 PM UTC

sampo wrote: post #321

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 empirica…

Rachael Neve seems to believe, that APP (amyloid precursor protein) has a pathological role through other means than its degradation to amyloid beta, suggesting instead that it may have receptor-like properties [1]. Mostly, as I understand it, from arguments of structural similarity. It's interesting, but I know of very little solid evidence pointing that way. (And the article I could find was quite old)

I think suggestions that amyloid beta is part of cellular defense, and that its "designed" to stick to foreign bodies/pathogens, preventing them from spreading in the brain, is more interesting.[2] Early-onset Alzheimer would then be caused by amyloid beta being released erratically, while many of the late-onset Alzheimer cases might be driven by amyloid beta in addition to some underlying inflammatory process.

The amyloid hypothesis, strictly interpreted: that amyloid beta is highly neurotoxic through plaque formation and is the sole cause of neurodegeneration, is also known to be dubious and not explain many observations very well. But that doesn't really challenge that amyloid beta plays a significant part in the pathology. [3]

[1] https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1862818/

[2] https://www.frontiersin.org/articles/10.3389/fnagi.2018.0022...

[3] https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4888851/#emmm20...

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

#360

Post by zajio1am » Tue, Dec 31, 2019, 2:34 PM UTC

elfexec wrote: post #86

rooundio wrote: post #5

Unfortunately true for most scientific communities and the reason why the current academic system is badly broken and talented young minds decide to quit academia before even submitting a dissertation.

Academia was always broken. Despite the current undeserved reputation as academia being open to debate and new ideas, the opposite has always been true. Academia has its sordid history of dogmaticism and hero-worshipping. And progress in knowledge usually advanced in spite of academia rather than because of it. Go read about the battles between Newton and Hooke or even Newton and Leibniz. The doctor who first suggest…

> My personal favorite is Georg Cantor who was mercilessly attacked by his fellow academics within math and even without for his theories on infinite numbers.

I do not think this is comparable to other examples. Math is not science in the sense that its correctness is not determined by the outside reality, only by its internal consistency.

Different (finite vs infinite) axiomatizations leads to different classes of math structures, so it is only a matter of custom which structures are worthy of studying and how these 'leading' structures are defined.

And there is a point that if one studies countable structures (e.g. arithmetics or graph theory) then using arguments from infinite set theory (e.g. ZFC) is overkill. We do not know whether such theory is consistent and if it is not, then most likely much simpler theories covering the countable structures would still be consistent.