7 ms·
“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
by janeway 7mo 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.” We would immediately build better telescopes to track it precisely, refine its trajectory models, and begin developing propulsion systems capable of interception. You do not wait for the cure before improving the measurement. You improve the measurement so that a cure becomes possible, targeted, and effective.
Medicine is no different. Refusing to improve early, probabilistic diagnosis because today’s treatments are modest confuses sequence with outcome. Breakthroughs do not emerge from vague labels and mixed populations. They emerge from precise, quantitative stratification that allows real effects to be seen. The danger is not that we measure too early. It is that we continue making irreversible clinical and research decisions using imprecise, binary classifications while biological insight and therapeutic tools are advancing rapidly. Building the probabilistic layer now is not premature. It is how we make future intervention feasible.
- rossant 7mo agoI agree. I feel that many medical doctors do not share this mindset.
- jader201 7mo 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.
- r0ze-at-hn 7mo agoCure 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 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.
- tsimionescu 7mo agoThis 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.
- r0ze-at-hn 7mo agoAfter 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.
- david-gpu 7mo agoYou 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 https://en.wiktionary.org/wiki/ultracrepidarian#English
- foobiekr 7mo agoI want to know so that I can make plans. Including end of life plans, in all senses.
- iamflimflam1 7mo agoExactly - there are things that I would change now to make sure I make thing easier for myself and - more importantly - easier for the people around me.
- fletchowns 7mo agoThose plans should be in place regardless of the results of a blood test
- renewiltord 7mo agoNo, they shouldn’t. Makes no sense to plan for living with a mental disability if you’re not close to needing it. I am absolutely not going to plan on a care facility right now. That sounds absolutely bogus.
- adrianN 7mo agoNotarizing any wishes against some medical procedures in case a sudden accident ruins your ability to dissent prevents doctors from being forced to keep your body alive as long as possible.
- tsimionescu 7mo agoThat doesn't apply to Alzheimer's disease directly though. If you don't want to live when your conscious life is limited to short flashes of awareness among a deeply terrifying melange of visions of the past and hallucinations, DNR laws don't in any way force or even allow doctors to euthanize you. You can persist in this state for many years without ever triggering a DNR check.
- Someone 7mo ago“We have no cure. I don’t want to know.” isn’t the same as “We have no cure. We as a society don’t want to know.” People can be fine with being tested so that epidemiologists can work on growing our knowledge and, at the same time, not wanting to know their own diagnosis.
- vasco 7mo agoAlzheimer isn't new. You should compare it with a situation like: Imagine you're born and you eventually learn that there's an asteroid on a collision course with earth, from way before you were born. It's going to take many years to get here and you may die before it hits and so far no scientists have been able to come up with a way to deflect it. Do you care? Adding newness to the situation makes it wildly different.
- dataflow 7mo agoThis analogy has a rather fatal flaw, which is that we already know people who've gotten Alzheimer's, and we also know for a fact people will continue to fall victim to it, at a pretty predictable rate. i.e. the detection has already happened! Anyone who was waiting for a potential victim to appear before researching the cure already has all the reasons they need to research it. Detecting whom exactly the next victim is going to be isn't really going to change anything as far as researching a treatment or cure goes. (Unless the person is super important or popular or rich, I guess?) This is absolutely nothing like the asteroid example, where knowing that anybody is going to fall victim to it would itself be news of astronomical proportions. Previously there was a high chance the event wouldn't happen, and now it seems likely it will, so that entirely change the calculus of your priorities. This just completely destroys the analogy. (There are other reasons it doesn't fit too, but one is enough.)
- tim333 7mo ago>Detecting whom exactly the next victim is going to be isn't really going to change anything What if you found for example all the diagnoses happened shortly after an HSV-1 infection? The more information as to what's going on the better, for research at any rate.
- deleted 7mo ago[deleted]
- sigmoid10 7mo agoAccurate detection in individuals is still important for testing any potential cure. Otherwise you can only do normal population studies over a very long time and pray that you didn't miss on any confounding variables. With this level of accuracy in diagnosing, you can do targeted testing.
- lopis 7mo agoWhile that is true, it doesn't change the sentiment behind “We have no cure. I don’t want to know.” if knowing the diagnosis doesn't help you personally. Sure you might have a sense of responsibility for mankind but you still know you can't do anything to save yourself. With that said, lifestyle changes can slow down the onset of Alzheimer's, so knowing the diagnosis isn't totally useless.
- mseepgood 7mo ago> We would immediately build better telescopes to track it precisely, refine its trajectory models, and begin developing propulsion systems capable of interception That's not what would happen. We wouldn't mobilize. We'd fragment. Within days, the prediction would be declared partisan. One bloc would call it settled science; another would call it statistical hysteria. Billionaires would quietly commission private shelters while publicly funding studies questioning whether the asteroid even qualified as "large." News panels would debate whether the projected impact zone was being unfairly politicized. Conspiracy channels would insist the asteroid was fabricated to justify global governance. Others would insist the real asteroid was being hidden. Amateur analysts would flood the internet with homemade trajectory charts proving the professionals wrong. Death threats would arrive in astronomers' inboxes faster than research grants.
- n4r9 7mo agoThe film "Don't Look Up" is very similar to what you describe.
- MadxX79 7mo agoAbsolutely, the belief in scientific circles is that the way forward to develop cures (or at least treatment that slows down the progression) is to treat it early. When you get to the point where you start showing clear symptoms, your brain is already mush. If you have a potential treatment that attacks the root cause, you would have to catch the very early, pre-clinical, stages of the disease, but without good diagnostics there is no way to do that (short of giving the disease to a wide swath of the population, like a vaccine... but that gets expensive very quickly, and side effects become a bigger worry.
- KurSix 7mo agoI get the logic, but I think the emotional side is a lot harder than the asteroid analogy makes it sound
- mejutoco 7mo agoThat is more or less the plot of the movie "don't look up". https://www.imdb.com/title/tt11286314/ https://www.imdb.com/title/tt11286314/
- chaostheory 7mo agoMaybe if you can keep the results a secret from health insurance companies you’d have a point. However, not everyone has coverage under a large organization’s umbrella, and these people might be denied coverage.
- NedF 7mo ago[dead]
- FrustratedMonky 7mo agoWhen can we get it? I do want to know. If it is positive, that is still helping you accurately deal with whatever is happening to you.
- sandworm101 7mo agoThese are 50yos, not elderly retirees. What if knowing caused your employer to deny you a promotion? Im in the military. This sort of diagnosis on one's file could have real impact on future prospects. People already fear ADHD tests for the same reason. I know a guy who is leaving the military after 20+ years flying transports. He is applying to airlines. If you were an airline, would you higher an experienced pilot with a positive alzheimer's diagnois in thier medical data?
- stvltvs 7mo agoAn argument for a robust social safety net for when a diagnosis threatens your career in a safety-critical field.
- lr4444lr 7mo agoOkay but even that analogy is limited. Incurable progressive diseases almost invariably have lifestyle factors, supplements, or medications that can at least slow the rate of progression for many people. Those are also often more effective when started during early stage detection. There is literally nothing the average person can do about the asteroid.
- _alternator_ 7mo ago>”We have no cure. I don’t want to know.” Is this a response to another comment or did I miss the quote in the article? Otherwise it’s just a straw man.
- wordglyph 7mo agoYour gut bacteria is the prevention and the cure.
- wizzwizz4 7mo agoThat's a hypothesis. If we knew that for certain, it would be really big news; and we could investigate to learn why, and then we could isolate the causative factors and perhaps find other ways of deploying them… If you know something the rest of us don't, prove it: show us the evidence, show us the specific hypotheses, describe a repeatable experiment, show us the results if such an experiment has been performed. If you don't know something the rest of us don't, don't be so arrogant about your pet theories. Such arrogance costs lives.
- wordglyph 7mo agoYou do realize they already are investigating, right? Even looking into MS and parkinson. ALZHEIMER’S DISEASE (AD) and AD DEMENTIA Umbrella review (systematic reviews of SRs): https://www.nature.com/articles/s44400-025-00048-6 https://www.nature.com/articles/s44400-025-00048-6 Systematic review + meta-analysis (basal microbiota; AD): https://alz-journals.onlinelibrary.wiley.com/doi/abs/10.1002/dad2.70057 https://alz-journals.onlinelibrary.wiley.com/doi/abs/10.1002... https://pmc.ncbi.nlm.nih.gov/articles/PMC11672027/ https://pmc.ncbi.nlm.nih.gov/articles/PMC11672027/ Replicated case-control + functional metagenomics (AD dementia): https://alz-journals.onlinelibrary.wiley.com/doi/full/10.1002/alz.70417 https://alz-journals.onlinelibrary.wiley.com/doi/full/10.100... Large-cohort metagenomics (stage-specific / early pathology signals): https://pubmed.ncbi.nlm.nih.gov/40164697 https://pubmed.ncbi.nlm.nih.gov/40164697 Mendelian randomization (AD): https://pubmed.ncbi.nlm.nih.gov/38788075/ https://pubmed.ncbi.nlm.nih.gov/38788075/ https://www.sciencedirect.com/science/article/pii/S2274580724007143 https://www.sciencedirect.com/science/article/pii/S227458072... https://pubmed.ncbi.nlm.nih.gov/40665707/ https://pubmed.ncbi.nlm.nih.gov/40665707/ https://journals.sagepub.com/doi/10.1177/25424823261422629 https://journals.sagepub.com/doi/10.1177/25424823261422629 https://www.medrxiv.org/content/10.1101/2025.08.20.25333769v1 https://www.medrxiv.org/content/10.1101/2025.08.20.25333769v... Narrative / mechanisms (useful synthesis, not primary causal proof): https://www.sciencedirect.com/science/article/abs/pii/S156816372400388X https://www.sciencedirect.com/science/article/abs/pii/S15681... MILD COGNITIVE IMPAIRMENT (MCI) / DEMENTIA (cognition-focused evidence) Systematic review (MCI or Alzheimer’s dementia; PRISMA, PROSPERO): https://www.mdpi.com/2035-8377/17/10/155 https://www.mdpi.com/2035-8377/17/10/155 https://pubmed.ncbi.nlm.nih.gov/41149776/ https://pubmed.ncbi.nlm.nih.gov/41149776/ Scoping review (MCI and AD gut microbiomes + interventions, through Feb 2023): https://pmc.ncbi.nlm.nih.gov/articles/PMC12825029/ https://pmc.ncbi.nlm.nih.gov/articles/PMC12825029/ Systematic review of microbiota-targeted interventions for cognition/dementia risk: https://www.sciencedirect.com/science/article/pii/S0271531726000072 https://www.sciencedirect.com/science/article/pii/S027153172... RCT-focused systematic review/meta-analysis of probiotics for cognitive impairment risk/AD/MCI: https://pmc.ncbi.nlm.nih.gov/articles/PMC12645680/ https://pmc.ncbi.nlm.nih.gov/articles/PMC12645680/ FMT in dementia/MCI context (review of effects across neuro cohorts): https://www.sciencedirect.com/science/article/pii/S2666354625001073 https://www.sciencedirect.com/science/article/pii/S266635462... MULTIPLE SCLEROSIS (MS) Microbiome signatures via global data integration / ML: https://pmc.ncbi.nlm.nih.gov/articles/PMC12383397/ https://pmc.ncbi.nlm.nih.gov/articles/PMC12383397/ Systematic review/meta-analysis of probiotics in MS (preclinical + clinical): https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0319755 https://journals.plos.org/plosone/article?id=10.1371/journal... Systematic review + meta-analysis (antimicrobial exposure and MS risk; microbiome-disruption relevant): https://www.sciencedirect.com/science/article/abs/pii/S2211034825006741 https://www.sciencedirect.com/science/article/abs/pii/S22110... Mendelian randomization (gut microbiota causally linked to MS): https://pubmed.ncbi.nlm.nih.gov/39065244/ https://pubmed.ncbi.nlm.nih.gov/39065244/ https://www.mdpi.com/2076-2607/12/7/1476 https://www.mdpi.com/2076-2607/12/7/1476 Broad MS gut dysbiosis and therapeutic modulation review: https://pmc.ncbi.nlm.nih.gov/articles/PMC12668904/ https://pmc.ncbi.nlm.nih.gov/articles/PMC12668904/ MS gut-brain-barrier and intestinal barrier review: https://www.frontiersin.org/journals/immunology/articles/10.3389/fimmu.2025.1652796/full https://www.frontiersin.org/journals/immunology/articles/10.... Example MS cohort biomarker/signature work: https://www.nature.com/articles/s41598-024-64369-x https://www.nature.com/articles/s41598-024-64369-x https://www.nature.com/articles/s41598-025-19998-1 https://www.nature.com/articles/s41598-025-19998-1 PARKINSON’S DISEASE (PD) Multi-cohort metagenomic meta-analysis (Nat Commun, 2025): https://www.nature.com/articles/s41467-025-56829-3 https://www.nature.com/articles/s41467-025-56829-3 https://pubmed.ncbi.nlm.nih.gov/40335465/ https://pubmed.ncbi.nlm.nih.gov/40335465/ Large metagenomics cohort (Nat Commun, 2022): https://www.nature.com/articles/s41467-022-34667-x https://www.nature.com/articles/s41467-022-34667-x Integrated multi-cohort gut metagenome (Movement Disorders, 2023): https://pubmed.ncbi.nlm.nih.gov/36691982/ https://pubmed.ncbi.nlm.nih.gov/36691982/ https://movementdisorders.onlinelibrary.wiley.com/doi/10.1002/mds.29300 https://movementdisorders.onlinelibrary.wiley.com/doi/10.100... Metagenomic analysis (Movement Disorders, 2024): https://pubmed.ncbi.nlm.nih.gov/39192744/ https://pubmed.ncbi.nlm.nih.gov/39192744/ PD causal-inference and MR discussion (review-type synthesis): https://pmc.ncbi.nlm.nih.gov/articles/PMC12512240/ https://pmc.ncbi.nlm.nih.gov/articles/PMC12512240/ MR study example (PD gut microbiota): https://journals.lww.com/md-journal/fulltext/2025/10310/causal_association_between_parkinson_disease%2C_gut.96.aspx https://journals.lww.com/md-journal/fulltext/2025/10310/caus...
- ABCLAW 7mo ago>Refusing to improve early, probabilistic diagnosis because today’s treatments are modest confuses sequence with outcome. While you're right from the perspective of humanity taking the steps of gathering data then tackling the disease, most developed countries have single payer healthcare systems that require some level of cost-benefit analysis to approve covering new diagnostic systems. Alzheimer's disease progression doesn't seem to have any notable preventative indications other than 'eat well, exercise and stay mentally active', all of which are standard recommendations. Recall that this isn't an issue deciding between funding and non-funding. It's an issue deciding between funding Alzheimer's diagnostics, new GMP agonists, new screening options for highly preventable cancers, etc. Building out a dataset is nice but unless that's surplus money redirected from other programs it's going to come at a real flesh and blood cost.
- cafebeen 7mo agoWhile not a cure, there are many known modifiable risk factors for Alzheimer’s, so to some extent we know enough to deflect / mitigate dementia: https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(24)01296-0/abstract https://www.thelancet.com/journals/lancet/article/PIIS0140-6...