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by jader201 119 days ago
> “We have no cure. I don’t want to know.”

> If astronomers announced that a large asteroid might strike Earth in twenty years, and that we currently had no way to deflect it, nobody would respond by saying, “Come back when you already have the rocket.”

I don’t think the analogy fits, for a couple reasons.

1. People not wanting to know whether they have Alzheimer’s is because of the fear of a fate worse than death — living with Alzheimer’s.

2. People not wanting to know whether they have Alzheimer’s is not the same was not wanting a way to detect it. As you said, being able to measure it may help lead to a cure/treatment. I doubt people are against improving detection — they may just not want the detection to be applied personally.

1 comments

Cure is the wrong word. Alzheimer’s can be best described as a failure of a system and "debris" accumulates faster than it can be "cleared". There are many moving parts and everyone is unique about the cause of their system failure.

Wrote up my current systems understanding here https://metamagic.substack.com/p/the-alzheimers-equation, but it makes clear why treatments that target only one variable are mathematically doomed to fail to work on everyone and why there will never be a single "cure". It explains without needing to read 10,000 papers why we keep getting research talking about treatment X helps in some, but not all cases or symptom Y is associated in some, but not all, etc.

This is some personal opinion that I would bet the vast majority of Alzheimer's researchers would not actually agree with. The current consensus is that Alzheimer's is a particular disease, or a cluster of similar diseases.

I'm not saying your wrong, just that the level of confidence in your assertions is not warranted.

After spending years tracking through the genetics, conditions, lab work, research papers and seeing individuals years into the condition, this model is the best I have and explains everything I currently know. Why the cluster of conditions result in the same outcome, why some treatments help some folks, but not others.

But that is sort of the point of science, you take all the evidence you have and create a hypothesis and iterate as you get more evidence. If I find evidence that suggests something else then I will be happy to tweak or abandon this. My level of confidence comes from the existing evidence and lack of evidence otherwise.

You forming a personal opinion after years of interest in the subject is fine. You asserting that opinion as a fact is the problem.

It is a tale as old as time. See the story behind the term. ultracrepidarian: https://en.wiktionary.org/wiki/ultracrepidarian#English

Versus https://en.wikipedia.org/wiki/Argument_from_authority

See also: https://www.science.org/content/article/potential-fabricatio...

Amateur's asserting their opinions as facts isn't great, but epistemologically it's no worse (and systemically, like less harmful) than when the experts do it.

Experts, when given the chance, have a tendency to speak with nuance and describe the degree of confidence they have in different statements.

Compare this with an amateur writing with certainty about a subject that subject matter experts continue to debate after decades of work.

I know which one of the two I would rather bother listening to.