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

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

#291

Post by nextos » Tue, Dec 31, 2019, 12:14 AM UTC

el_cujo wrote: post #283

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…

This has been my experience more-or-less as well. Any graduate student that does anything even alzheimer's adjacent at the school I used to work at absolutely had to have a certain two researchers on their dissertation committee and they would 100% not let you progress without throwing a bone to beta-amyloid in your proposal (along with heavily pushing you to pander to some of their personal pet theories). It's a sun…

It's the same with autoimmunity. Some researchers are obsessed with genetics. But it's mostly about self misclassification due to infections and dysbiosis. Luckily, some top journals have started accepting this, but it's still an uphill battle against the establishment:

* Type 1 diabetes: https://www.biorxiv.org/content/10.1101/2019.12.18.881433v1

* Multiple sclerosis: https://stm.sciencemag.org/content/10/462/eaat4301

* Lupus: https://stm.sciencemag.org/content/10/434/eaan2306

* Sjogren's: https://www.sciencedirect.com/science/article/abs/pii/S15216...

* Anti-phospholipid: https://www.sciencedirect.com/science/article/abs/pii/S19313...

* Parkinson's: https://onlinelibrary.wiley.com/doi/full/10.1002/mds.27105

* Alzheimer's: https://advances.sciencemag.org/content/5/1/eaau3333?intcmp=...

It's like the old joke that science progresses one funeral at a time.

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

#292

Post by hitekker » Tue, Dec 31, 2019, 12:14 AM UTC

mirimir wrote: post #235

dang wrote: post #222

Earlier quoted context omitted.

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

How about "The beta-amyloid paradigm thwarted progress toward an Alzheimer’s cure"?

I disagree. The article articulates a political problem, not an error in reasoning.

These few scientists did not just choose a stable approach that later turned out to be wrong: they doubled-down, tripled-down on a shakey guess for decades and suppressed voices to the contrary. The seemingly credentialed, respected, and authoritative experts of Alzheimer's sabotaged the science around a hot-button problem for their own personal gain, while society suffered the consequences.

This antipattern can be seen as a kind of "academic rent-seeking" or "false-expertise". It can also be called "collusion" given that an organized group of people semi-intentionally marginalized their opposition at the outset, and at great cost to the broader public.

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

#293

Post by aidenn0 » Tue, Dec 31, 2019, 12:15 AM UTC

kd0amg wrote: post #277

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…

> 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.

Rather NIH can't fund projects for the 10 most likely ideas, so it funds projects for the 1 or 2 most likely ideas.

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

#294

Post by a1369209993 » Tue, Dec 31, 2019, 12:15 AM UTC

wavepruner wrote: post #270

internet_user wrote: post #244

Earlier quoted context omitted.

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

Lyme may be a complicating factor, but I do not believe it is the root cause. I won't go into details because it will just invite more down votes. You can look at my older posts if you really want to know more. I talked about it a bit when I first created this account.

> I won't go into details because it will just invite more down votes.

I'd just like to clairify that I downvoted because of the lack of details, not their presence.

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

#295

Post by patmcc » Tue, Dec 31, 2019, 12:17 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.

One of the common anti-vaxxer talking points is about how vaccines are dangerous because they contain mercury.

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

#296

Post by beering » Tue, Dec 31, 2019, 12:18 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.

Probably because a lot of the antivax scare was around thimerosal in vaccines (which is a mercury compound). Logic was: mercury is known to be poisonous, thimerosal is a mercury compound, thus vaccines must be poisonous.

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

#297

Post by wayoutthere » Tue, Dec 31, 2019, 12:32 AM UTC

umvi wrote: post #263

OGWhales wrote: post #257

Earlier quoted context omitted.

Care to share further? You have sparked my curiosity.

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.

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

#298

Post by barmstrong » Tue, Dec 31, 2019, 12:35 AM UTC

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…

Sorry to hear that this was the case!

I wrote about how scientific research is broken earlier this year, and what you're describing is one of the most pernicious. https://medium.com/@barmstrong/ideas-on-how-to-improve-scien...

https://www.researchhub.com/about is a project I'm helping get off the ground which hopefully can help this problem, by eventually replacing the traditional journals. Still early days (just beta launched).

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

#299

Post by hitekker » Tue, Dec 31, 2019, 12:55 AM UTC

wavepruner wrote: post #285

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…

Thanks for the summary. (edit: although I do not think CFS is an appropriate diagnosis as it doesn't even come close to describing all the symptoms.) I led with the details on a different account. My karma was destroyed and afaict my posting privileges were revoked for posting too frequently with explanations. I don't think you understand the huge amount of anger that some people have towards people like me saying me…

Thank you for the context, but I wouldn't defend yourself in this thread: you already have one person narrating your posting history, and another cursing at you (in seeming rage) for not oversharing.

Who would have thought that, on HN of all places, a request for privacy would be interpreted as a license for abuse?

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

#300

Post by scarejunba » Tue, Dec 31, 2019, 12:57 AM UTC

wavepruner wrote: post #285

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…

Thanks for the summary. (edit: although I do not think CFS is an appropriate diagnosis as it doesn't even come close to describing all the symptoms.) I led with the details on a different account. My karma was destroyed and afaict my posting privileges were revoked for posting too frequently with explanations. I don't think you understand the huge amount of anger that some people have towards people like me saying me…

Haha, I'm familiar with the rate-limiter and ban. Anyway, just to clarify, I didn't mean to diagnose anything up there ; just summarize your comments. I know you didn't say that I did, but just mentioning it here for the third parties.