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

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

#201

Post by snowwrestler » Mon, Dec 30, 2019, 5:42 PM UTC

leftyted wrote: post #155

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. 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…

Scientific funding is a political game only to the extent that the politics are not contradicted by evidence. For example, no matter how good you are at scientific politics, you're not going to get the NSF to give you $1 billion to test whether the Earth is flat, or if gravity is actually caused by little fairies pushing us all down toward the ground.

Why? Because, at least for public scientific funding, it is bad politics for funding committees to look like they value politics over evidence. It opens up a big lane for other scientists to attack them.

If you have 3 groups all studying the same phenomenon, all proposing very similar studies, politics will in part affect who gets that funding. In retrospect, this can look overly conservative and even corrupt... but we must have the discipline to recognize hindsight for what it is.

In real time, trying to make funding decisions with little to no hard evidence for the right course of action, it is scientifically valid to use whatever evidence is available, even if it's something as nebulous as a reputation or a hunch.

Science has a reputation for producing hard evidence and knowledge, but the practice of science exists far out, on the edge of the unknown. The whole point of conducting scientific research is to explore what we don't know. By definition, evidence is scant there.

So what if a group proposes a hypothesis that seems really far out there, or even contradicts existing evidence? It's true that they will be less likely to get funding regardless of their connections.

Is it wrong that radically new ideas and approaches have a steeper hill to climb? Not necessarily; they have worse priors. "Extraordinary claims require extraordinary evidence." It's true that paradigm shifts often start out looking radically new, but it's also true that most radically new ideas end up being wrong.

Setting aside some funding for crazy ideas is not a bad idea, but it should not be very much... it certainly won't be enough to preempt any hindsight disappointment. There will always be a chance we'll look back and say "I wish we had funded those (seemingly crazy) researchers earlier."

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

#202

Post by shakil » Mon, Dec 30, 2019, 5:44 PM UTC

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…

See this other link for the case of a Colombian woman whose brain is full of the amyloid plaque but she is dementia free due to a genetic mutation. The biggest difference between her and the rest of her family that suffer from Alzheimer's is the fact that tau buildup is minimal in her brain.

https://www.sciencemag.org/news/2019/11/colombian-woman-s-ge...

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

#203

Post by ivalm » Mon, Dec 30, 2019, 5:52 PM UTC

frogger23123 wrote: post #72

ivalm wrote: post #57

Earlier quoted context omitted.

> The fact that we call some people "climate change deniers" tells me that we have an unhealthy dynamics going on there 1. Climate change is observable, it doesnt rely on a theory, just measurements. Nonetheless there are a bunch of people trying to discredit what is essentially a very well established observation. 2. Genesis of climate change (ie is it anthropogenic) is not a direct observable, but looking at concen…

Straw man. It's not black and white. Some are skeptical of the _degree_ to which the claims are true. Go watch Al Gore's 2006 documentary to see a good example of alarmist hyperbole. Some would say this movement has been hijacked by those seeking political and economic power, by those who don't care about the environment. Some would say the projected outcome is 10x exaggerated, and are suspicious of proposed "solutio…

> Al Gore's 2006 documentary

He is not a scientist. The entire discussion was about scientists engaging in group think.

Regarding skeptics to degrees

1. There are no credible skeptics in the community regarding the observation that climate has warmed in the past 100 years

2. There are nearly no credible skeptics in the community regarding the rather simple deduction that humans caused a non-trivial portion of the warming in the past 100 years

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

#204

Post by dekhn » Mon, Dec 30, 2019, 6:03 PM UTC

dccoolgai wrote: post #165

dekhn wrote: post #159

Earlier quoted context omitted.

"""feeding into the narrative that science is just another competitive team sport where people compete with whatever means necessary is downright dangerous.""" This is precisely what modern science is (well, a major subset). The competition for grant funding and attention space is extremely intense. I agree there was no "alzheimer's cabal" but it's not uncommon in science for the prevailing mainstream position to (in…

Interesting... Are there any current issues you can think of in academia where disagreeing with the prevailing opinion can make one a pariah... Even, perhaps, assigned an epithet like "denier"? I think whenever this happens in academia/science, it is incredibly dangerous. Proper science invites and celebrates denial - seeks to deconstruct it and understand it to be more certain of the truth. The mere presence of any…

It's not relevant today but a well-known virologist, Peter Duesberg, was an HIV-causes-AIDS denialist (before that he was very well known for real accomplishments in virology). However, he never showed any evidence to support his case and there was extensive evidence against it. If you want to be a denier, the reality is that you have to show a lot of compelling evidence both supporting your position, and against the mainstream position.

Modern denialism tends to be more centered around climate change- whether it is occurring, and what the impacts will be in the near and long term, and how to respond. Many physics people (who worked on high energy particle physics, etc) have looked at the claims from the various climate change promoters and found the source evidence to be less than convincing. If they articulate this, they are often described as denialists. Here's an example: https://en.wikipedia.org/wiki/William_Happer

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

#205

Post by volkse » Mon, Dec 30, 2019, 6:11 PM UTC

amw wrote: post #198

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…

I agree that the title is pure clickbait, I disagree that the article completely divorces itself from the premise the title implies. This whole thing where science journalism drums up this huge controversy after the fact when enough science on a topic has been performed to think that maybe a particular explanation is a bad one is a symptom of organizations that have to drum up a saucy narrative to sell. It is perfect…

The title isn’t “pure clickbait” although a little hyperbolic. I worked in a research laboratory in a top medical school in the US. The professor in charge of the lab was an amyloid sceptic, and the existence of this sort of “cabal” was apparent, at least to him. Words like “delusional” were thrown around. This was 7 years ago!

Also, considering the actual harm caused, i don’t think you can be hyperbolic enough about this issue..

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

#206

Post by jessaustin » Mon, Dec 30, 2019, 6:12 PM UTC

igorkraw wrote: post #20

ping_pong wrote: post #3

This is another example of group-think in scientific research. The same thing happened for decades where low fat diets were supposed to help for heart disease but that has only recently been reversed after decades of indoctrination. This happens all throughout scientific research, where science is supposed to be immune to this, but it's obviously not. So many things we take as gospel, only to be reversed decades late…

While I'm all for changing funding systems I want to point out that there fact we have these scandals is the system somewhat working . Similarly to how constant criticism of the government/large corporations isn't a sign of rot, but of a system where improvements are still possible -as long as someone is pointing out the problems you can fix them. And science is not supposed to be immune to this, the culture of scien…

Parent's example comes from a field in which the system manifestly does not work. Basic tenets of nutrition change on a regular basis. Every study is funded by commercial interests. Nothing gets better, ever.

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

#207

Post by omgwtfbyobbq » Mon, Dec 30, 2019, 6:14 PM UTC

ekianjo wrote: post #54

> there is not even a disease-slowing treatment. True-ish, but Aricept is generally seen and used as a disease-slowing treatment (even if the data is inconclusive, it is perceived this way by physicians). > In patients with Alzheimer's Dementia participating in clinical trials, administration of single daily doses of 5 mg or 10 mg of ARICEPT produced steady-state inhibition of acetylcholinesterase activity (measured…

I'm guessing the perception that it slowed Alzheimer's is because some patients were misdiagnosed. Aricept can help with falls in Parkinson's patients with balance problems, and in my experience seems to help with arousal.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3013493/

Accurately diagnosing the elderly is difficult. My grandmother was diagnosed with Alzheimer's 15-20 years ago, which was likely inaccurate. At this point it looks like she probably has Dopa-Responsive Dystonia and may also have some form of Vascular Dementia, some sort of CSF disorder, and possibly some other problem that hasn't been diagnosed.

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

#208

Post by ckosidows » Mon, Dec 30, 2019, 6:15 PM UTC

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.…

Does this argument prove anything? An enormous industry that wants to disprove man-made climate change science doesn't prove climate science is iron-tight. There are also many vested interests, at this point, in proving popular climate science to be true. This can be companies, politicians, and even just people who are invested in the hypothesis (either professionally or personally).

There are industries who oppose the hypothesis that climate change is man-made for personal reasons, but there are people on the other side who have similar interests. There is scrutiny about man-made climate change, but I've often seen such scrutiny lambasted by people who are too vested in the idea that man has solely created climate change. Is it possible that, despite push-back from oil companies, there is still group-think happening with climate change science?

As a disclaimer I believe a significant portion of climate change is man-made but also that part of it can be attributed to natural changes. I _definitely_ think we need to act to save ourselves from climate change. Climate change science has a lot of momentum right now and perhaps certain ideas have been given undue recognition or derision due to their conclusions found.

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

#209

Post by jessaustin » Mon, Dec 30, 2019, 6:18 PM UTC

igorkraw wrote: post #194

pjc50 wrote: post #99

Earlier quoted context omitted.

Why did you have to go straight in on "race science"? The history there is that "inherent inferiority" has been used to justify everything from legal discrimination to actual genocide. "Race science" has killed more people than nuclear weapons and poisoned more lives than tetraethyl lead. It's the clearest example where a simple disclaimer like "I'm not racist but" is no more adequate than handling plutonium with kit…

Personal opinion: in general, if people talk about "dissent missing" and "we need more controversial opinions", that's often code for "we need more justification for bigotry". By adopting a perpetually "but we are just asking questions" facade they implicitly a) frame things as "value neutral" when it really isn't and b) place an absurdly high burden of proof before we can finally say "yes in fact racism is wrong"

Another conspiracy theory: obvious morons like the racists are encouraged and publicized in order to discredit those who dissent from the established narrative in real ways that actually challenge TPTB.

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

#210

Post by smt88 » Mon, Dec 30, 2019, 6:19 PM UTC

garmaine wrote: post #28

smt88 wrote: post #22

Earlier quoted context omitted.

Which of these categories does the National Science Foundation fall under?

#2, as it is funded by politicians.

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