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

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

#281

Post by roenxi »

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

Even more information wouldn't really help. 'Crackpot' is something of a shorthand for an idea that disagrees with consensus research position. 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.

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

#282

Post by internet_user »

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?

The benefit is in punting off complicated case quicker, because the insurance pay out is the same, regardless if you spend 30 seconds or 30 minutes on the patient.

There is often nothing you can do to help anyway, but you can certainly bill 250 bucks every 5 minutes, and many, many do so.

In fact, some physicians will not even accept complicated cases, especially if they involve chronic pain treated with opiates, thanks to the hysteria around overdoses today.

And that is the reason why universal healthcare will fail, and why the NHS has a private tier, and routinely pays for treatments outside of the UK, done in private hospitals.

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

#283

Post by el_cujo »

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 sunken cost fallacy at this point, people have build entire careers on the beta-amyloid stuff and they will NEVER accept an alternative because it would make them irrelevant. These same people hold a lot of power in the field.

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

#284

Post by el_cujo »

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…

>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.

It's bad to sow too much mistrust in science, sure, but it certainly feels like society right now is way too far in the opposite direction right now, with people blindly believing any headline following the phrase "a new study says..." or "scientists say...". A lot of scientific fields are very competitive for funding right now, there is immense pressure to twist every result into a "win" while equally important null results ("we tried X and surprisingly it did not worked") are basically treated as worthless.

People shouldn't blindly mistrust science, but blind trust is just as dangerous, the system right now is far from perfect. I believe most researchers still ultimately want to solve mysteries in nature and improve life, but they're also human beings who ultimately want to be able to keep working and provide for themselves and their families, these two motivations are not always perfectly aligned.

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

#285

Post by wavepruner »

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…

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 mercury caused this illness.

Leading vaguely and easing people into the details prevents my karma from being destroyed. I'm not sure how else to handle this except by not talking about it at all, but the only way I can make meaning out of my experience is to help others with the same illness, so I will continue to do so. I found the cure from posts like the one's I make now. I'm paying it forward.

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

#286

Post by harimau777 »

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?

I think the parent may be referring less to the practicing wing of medicine and more to the research wing.

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

#287

Post by el_cujo »

qqqwerty wrote: post #71
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…

I will acknowledge that those forces may be in play. But I will also ask you to acknowledge that oil extraction has and continues to make certain people, companies, and governments immensely wealthy and powerful and that those groups are very interested in keeping the status quo. Those people/companies/governments have the power and resources to finance research into climate change that would support their narrative.…

Yeah I agree there is a very strong incentive for certain groups to disprove climate change and they're backed by a lot of money and influence. Comparatively, there doesn't really seem like that big of an incentive to sell a "lie" that CO2 is fucking the climate. That being said, it does irk me a bit that I know so many people who smugly demean the moronic science-deniers who don't believe in climate change, even though they themselves don't know any of the data or figures that support climate change. Most people just follow whatever their talking-head of choice on tv tells them to believe.

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

#288

Post by a1369209993 »

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…

> 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.

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

#289

Post by garmaine »

smt88 wrote: post #210
garmaine wrote: post #28

Earlier quoted context omitted.

#2, as it is funded by politicians.

Politicians don't make decisions about which researchers get grants and which don't.

They make decisions about what money is available in the first place, and appoint the leaders of the organization that runs the grant selection process.

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

#290

Post by jonplackett »

catoc wrote: post #44
jonplackett wrote: post #17

Earlier quoted context omitted.

I spoke to someone about this the other day and they claimed it was now the dairy and meat industry campaigning in response to get their fatty foods re-accepted. Is there any truth to this? Or anyone heard anything about this?

I actually did read the book. It is really well researched. It certainly did not come across like that when the book was first published.

Which book do you mean?
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