[HN Gopher] Decades of Research Misconduct Stalled an Alzheimer'...
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       Decades of Research Misconduct Stalled an Alzheimer's Cure
        
       Author : sorokod
       Score  : 104 points
       Date   : 2025-02-23 17:46 UTC (5 hours ago)
        
 (HTM) web link (www.sciencefriday.com)
 (TXT) w3m dump (www.sciencefriday.com)
        
       | winterbloom wrote:
       | should execute whoever played along with this
        
         | nobodyandproud wrote:
         | No, but the careers and reputation of those who lead this
         | avenue _and undermined_ good science must be conclusively
         | ruined.
         | 
         | We can start by letting the truth come light in stark and
         | unambiguous terms again and again, along with the billions of
         | dollars in damage and hundreds of thousands if not millions of
         | families left to suffer thanks to prestige and fraud.
         | 
         | Better yet, also reward the risk takers then and now; trying to
         | chase good science as hazardous as it was.
        
           | readthenotes1 wrote:
           | Like the former President of Stanford? It took years for him
           | to be given the golden parachute
        
             | nobodyandproud wrote:
             | If the shoe fits.
             | 
             | It's a big scandal and I suspect researchers in businesses
             | and universities be found complicit; if we have the
             | appetite and headcount to chase it.
             | 
             | I have little tolerance for fraud, and this is an example
             | of why trust in science (the institution) is at an all-
             | time-low.
        
             | throwawaymaths wrote:
             | good news! he's doing a vc-backed startup now
        
         | cortesoft wrote:
         | I know this is a flippant comment, but do you really think this
         | would solve the problem? I feel like this would just lead to
         | academic misconduct never being reported. It is hard enough to
         | get someone to report a fellow academic for fraud when the only
         | consequence is professional reputation; do you really think
         | ANYONE would turn in a colleague when the consequence is death?
         | 
         | Plus, people would be so scared that they will make a mistake
         | that will be interpreted as fraud that no one will want to
         | publish research.
        
           | ein0p wrote:
           | Maybe not "execute" but some real-world accountability would
           | be nice. As in, perhaps, a lengthy prison sentence.
        
       | mschuster91 wrote:
       | FYI: This topic has been extensively discussed here over a
       | loooong time [1].
       | 
       | [1]
       | https://hn.algolia.com/?dateRange=all&page=0&prefix=false&qu...
        
         | sorokod wrote:
         | The book is new though.
        
       | SirensOfTitan wrote:
       | Scientists like Sylvain Lesne whose alleged misconduct cost us
       | over a decade investigating a dead end hypothesis should face
       | substantial prison time. Considerable people have faced the
       | horror of this disease with no hope for a cure in sight because
       | charlatans like this likely manipulated data in the name of
       | making their own careers.
        
         | voisin wrote:
         | There should be some laws that were broken. Fraud in order to
         | obtain research grants, fraud in order to maintain labs, etc
         | etc.
        
           | delusional wrote:
           | In my mind this very much depends on who was tricked here. If
           | the research was funded by companies, then arguably they
           | should just have better oversight and the loss of their
           | investment is already "punishment" to incentivice that better
           | oversight. If it was public money, then it depends more on
           | the nature of the fraud. I could concieve of a circumstance
           | where I would also argue for a lapse in oversight and
           | therefore a sort of "diffusion" of the responsibility.
           | 
           | I don't think it's certain that anything illegal happened
           | here. It was certainly wrong, but wrong how?
        
             | wakawaka28 wrote:
             | >If the research was funded by companies, then arguably
             | they should just have better oversight and the loss of
             | their investment is already "punishment" to incentivice
             | that better oversight.
             | 
             | This is not at all how the law works. You can't fool
             | investors on purpose then shrug it off as "I win, they
             | should have done their due diligence and second-guessed
             | every aspect of my work that I intentionally falsified"
             | lol. What you're arguing for is equivalent to a diffusion
             | of responsibility for accounting fraud, as if the victims
             | deserve it because auditors didn't detect it immediately.
             | 
             | I don't know the whole story but deceptive practices
             | (deliberate wrongdoing) need to be punished, if that is
             | what happened here.
        
               | onemoresoop wrote:
               | That happens all the time in the stock market and rarely
               | anyone gets punished.
        
         | matthewdgreen wrote:
         | There is an incredibly valuable and interesting comment ranked
         | below yours that gives enormous amounts of context on the
         | Amyloid hypothesis and the state of the field. I don't have the
         | power to make that the top-ranked comment and all the "we need
         | to punish" comments lower ranked. But I do wish the posters and
         | other readers on HN would help to make that happen.
        
         | RobotToaster wrote:
         | They have potentially condemned hundreds of thousands of people
         | to suffer with this disease unnecessarily. The level of harm
         | they have caused may be far worse than anything Josef Mengele
         | did.
        
       | ein0p wrote:
       | What do doctors prescribe nowadays? Same discredited meds?
       | 
       | How about SSRIs, for which much of the research does not provide
       | supporting evidence? E.g. there's a 2022 meta-study by Moncrieff
       | et al that shows there's no consistent evidence tying serotonin
       | to depression. An earlier 2008 placebo-controlled study by Kirsch
       | et al shows that SSRIs are barely any better than placebo.
       | 
       | IOW, SSRIs are useless horseshit for the vast majority of people
       | (especially in the absence of e.g. CBT) and the theory behind
       | them is not supported by evidence. Why are they still prescribed?
        
       | pedalpete wrote:
       | I work in neurotech/sleeptech and work with Alzheimer's
       | researchers.
       | 
       | This is sensationalist and one-sided.
       | 
       | Alzheimer's is the most common form of dementia, and it is not
       | clearly understood. It is potentially the most common form
       | because it is not understood and there are many, myself among
       | them, who believe that multiple different diseases are being
       | assigned a single title because we don't understand the disease
       | enough.
       | 
       | This isn't to say the Amyloid hypothesis is correct, it may be
       | correct in a number of cases, but the Type 3 Diabetes may also be
       | correct.
       | 
       | The Amyloid Hypothesis has not been disproven. Yes,
       | misrepresented data in a few studies have significantly put into
       | question the reliability, however hundreds of other not
       | "doctored" studies have shown the hypothesis holds significant
       | promise.
       | 
       | The pharmaceutical companies did not make up the format of the
       | disease in order to sell drugs, and the current drugs are not
       | very effective, but that doesn't mean the theory is wrong. Just
       | because amyloid build up is a marker of the disease does not mean
       | that removing this metabolic waste would reverse the disease.
       | That's like saying blowing your nose would cure the common cold.
       | 
       | In the case of AD, the suspicion is that the Amyloid/Tau build up
       | damages the neurons ability to signal within the brain, like a
       | blockage in a pipe that causes the pipe to break. Removing the
       | blockage does not repair the pipe.
       | 
       | So why bother removing it at all?
       | 
       | A researcher we work with has posited a theory (which is fairly
       | new, but I'm not sure she is the first) that amyloid build up
       | reduces the power of delta slow waves, and the related glymphatic
       | flushing of metabolic waste. This is why the drugs might be
       | valuable (I'll say might be, rather than are), increasing the
       | removal of waste slows further progression of the disease.
       | 
       | Having said that, there is a point in time where slowing
       | progression is just lengthening time in poor health, and is not
       | valuable, but prior to that, it can be valuable (I'll leave it up
       | to individuals to decide what is right for them or their family
       | members).
       | 
       | We've been developing slow-wave enhancement technology at
       | Affectable Sleep [1] for the last 5 years, and similar tech has
       | shown early promise in people with AD [2] as well as potential
       | preventative in elderly people [3].
       | 
       | [1] https://affectablesleep.com
       | 
       | [2] https://pubmed.ncbi.nlm.nih.gov/39048400/
       | 
       | [3]
       | https://academic.oup.com/ageing/article/52/12/afad228/750330...
        
       | bartathe wrote:
       | This is my field. There have been three major scandals in the
       | "amyloid" field -- Sylvain Lesne, Eliezer Masliah, and lecanemab
       | trials not informing patients they had the APOE4 variant, which
       | is associated with cerebral amyloid angiopathy, a vascular
       | condition that the same scientists who led those trials
       | previously noted was correlated with cerebral hemorrhage side
       | effects. Sylvain Lesne produced shitty research that was not that
       | highly cited, below is my take on the field and my concerns
       | regarding journalists poorly communicating the science in this
       | story. My perspective on why we are behind other fields is in
       | paragraph five. The next three paragraphs are just context as to
       | why I think there is no singular "amyloid hypothesis," and why
       | this kind of journalism threatens our field despite a desperate
       | need for dealing with fraud, too. I realize this is long, I am
       | not a journalist, I am not a good communicator, I am a scientist.
       | If anyone has advice, please share it with me, likewise with
       | questions.
       | 
       | Not being clear about "amyloid" nomenclature threatens to throw
       | the baby out with the bathwater, which will stall an Alzheimer's
       | cure even more. Most proteins are "globular," think kind of round
       | balls of scrunched up string, arranged in alpha-helices and some
       | beta-sheets. "Amyloids" are spine-like fibrillar protein
       | aggregates, where each vertebrate is a flattened version of a
       | protein folded in beta-strands. The vertebrate is created by
       | these beta-strands stacking into beta-sheets. Google "amyloid
       | fiber" versus "globular protein" to see what I mean by this
       | description.
       | 
       | "Amyloid BETA" is a usually disordered protein which can
       | aggregate into ONE of the amyloid fibrils seen in Alzheimer's and
       | other dementia patients' brains. Tau can form amyloid fibers, so
       | can TDP-43, TMEM, alpha-synuclein, etc. This is a good link --
       | https://people.mbi.ucla.edu/sawaya/amyloidatlas/ -- if you want
       | to see the cross-sections of all of the amyloid fiber structures
       | the field has solved with useful annotations. One "amyloid
       | hypothesis," for example, is that TAU hyperphosphorylation (the
       | addition of a lot of very negatively charged post-translational
       | modifications, think chemical ornaments you can add to a tree)
       | leads to tau amyloid fibers, which then lead to amyloid-beta
       | amyloid fibers. There is lots of speculation about the mechanism,
       | whether amyloid fibers can also have enzymatic function that lead
       | to metabolic dysregulation, whether certain amyloid fibers are
       | actually functional and exist in everyone but that certain types
       | or a certain amount is associated with disease, the catecholamine
       | hypothesis is something that can't be discounted, maybe amyloid
       | fibers are just a downstream effect of a true ultimate cause (in
       | which case, amyloid fibers are still an important clue, lots of
       | people are doing experiments now where they see how they can get
       | certain amyloid fibers in vitro using co-factors which may be one
       | step back to the root cause).
       | 
       | Another "amyloid hypothesis" is that amyloid beta OLIGOMERs, some
       | kind of non-fibrillar aggregate that we don't know the structure
       | of but that we know contains proteins that usually also make
       | amyloid fibers , causes Alzheimer's. This is what "amyloid beta
       | *56" is, by the way, an oligomer, and what Lesne's work argued.
       | We find oligomers to be extremely hard to work with and I could
       | write a paragraph or two about why, but the fact that this is
       | true makes OLIGOMER research, some of which is probably
       | legitimate, an easy target for fraud. When molecules are well-
       | known to be extremely difficult to work with, if you try to
       | replicate someone's experiments and you can't, it could be
       | because the molecules are extremely difficult to work with or
       | because the authors whose experiments you tried to replicate
       | committed fraud. It's easy to think "well, it must be me," which
       | is how people get away with it for so long.
       | 
       | So, why are we so far behind? Something important to note is that
       | amyloid fiber structure on an atomic level has only recently been
       | cracked. Consider that we've known the structure of DNA since the
       | 50s, but we didn't know the structure of the MOST common amyloid
       | fiber specific to Alzheimer's patients until 20 freaking 16 --
       | https://pubmed.ncbi.nlm.nih.gov/28678775/. The reason for this is
       | that the method used to solve the structure of most proteins is
       | x-ray crystallography, but nobody has ever successfully
       | crystallized amyloid fibers except for very small fragments of
       | them -- https://pubmed.ncbi.nlm.nih.gov/15944695/. People think
       | this makes physical sense for reasons related to crystal
       | symmetry. The 2016 structure was solved using cryo-EM, which is a
       | relatively recent development and only won the Nobel in 2017.
       | Prior, it was derided as "blobology" because you would get very
       | coarse structures from cryo-EM --
       | https://pmc.ncbi.nlm.nih.gov/articles/PMC2726924/. So, the field
       | had to wait for cryo-EM to improve, a big part of which was
       | waiting for better computer vision algorithms (i.e. we use YOLO
       | and various CNN-based algorithms, too, we had to wait for that
       | shit just like Waymo), among other things.
       | 
       | Why is structure so important? Drugs have to physically interact
       | with some kind of protein target. So, you should probably know
       | the atomic model of the target so you can make use of
       | computational modeling techniques that can help you figure out
       | what binds to proteins. Alternatively, if you want to do a ton of
       | biochemical screens, i.e. make a bunch of the target protein,
       | treat it with various compounds, and see what sticks, you have to
       | make sure you are correctly making the target protein. In other
       | words, you don't know you've successfully reproduced the target
       | if you don't know what the target is. And the exact fiber
       | structure matters, since different structures appear to be
       | correlated with different diseases. Then, you have to figure out
       | a method to make that protein, which people also have done
       | recently for various types. The alternative is waiting for brains
       | from brain banks, which is very slow and doesn't provide a lot of
       | material. Keep in mind this also means you can't verify your
       | mouse models have the same structures, too.
       | 
       | I do not think these scandals significantly stalled an
       | Alzheimer's cure. It's a genuinely tough field -- you can't do
       | brain biopsies, amyloids are a tricky protein to work with, we
       | didn't know the structure until 9 years ago. I think there are a
       | lot of people who feel like they were locked out of funding
       | opportunities because of the focus on amyloid-beta. Maybe this is
       | true, I don't know. The lab I'm in has worked on tau for decades.
       | 
       | Another point -- neurodegeneration starts far before symptoms
       | show up. A lot of the recent drugs were designed for what is
       | basically metastatic cancer. Learning more about earlier stages
       | of neurodegeneration, which we can do with PET-ligands designed
       | to bind to fibers, the recent p-tau blood test, etc. is necessary
       | to uh... treat stage 1 or 2 cancer equivalent.
       | 
       | Finally, I have to get political here, considering recent events.
       | I'm not a professional communicator. Most scientists aren't. It
       | is things like this that are the reason we are being threatened
       | with funding cuts. Who will read nine paragraphs that I think are
       | necessary context for all of this? But it is much easier to read
       | an article like this, where the same point is repeated multiple
       | times, with some "they said this," "they said that," etc. than to
       | understand even a small portion of a field. More people will do
       | the former, and then apparently call for executions without any
       | way to judge who will be executed. And I sit down to write code
       | for my experiments, click on one link, and see what I perceive as
       | harmful information, and there goes apparently half an hour. I
       | can either let this kind of stuff lead to my funding being cut,
       | or reply to it and slow down my research.
        
         | anonnon wrote:
         | > But it is much easier to read an article like this, where the
         | same point is repeated multiple times, with some "they said
         | this," "they said that," etc. than to understand even a small
         | portion of a field. More people will do the former, and then
         | apparently call for executions without any way to judge who
         | will be executed. And I sit down to write code for my
         | experiments, click on one link, and see what I perceive as
         | harmful information, and there goes apparently half an hour. I
         | can either let this kind of stuff lead to my funding being cut,
         | or reply to it and slow down my research
         | 
         | Am I unreasonable to think that funding _ought_ to be re-
         | directed elsewhere, given that we 1) already have effective
         | anti-amyloid monoclonal antibodies, and 2) they don 't seem to
         | work that well, and 3) there are alternatives, like the chronic
         | inflammation hypothesis, that have supporting evidence? (e.g.,
         | https://www.nature.com/articles/s41591-024-03201-5)
        
           | margalabargala wrote:
           | > 1) already have effective anti-amyloid monoclonal
           | antibodies, and 2) they don't seem to work that well
           | 
           | I fear you may be falling into the exact trap that the person
           | you replied to, is warning against.
           | 
           | There is not just one thing called "amyloid", so not only are
           | the "anti-amyloid monoclonal antibodies" not effective
           | against all amyloid, the amyloid against which they are
           | effective may well not be disease-contributing amyloid.
           | 
           | The state of the field is much more complicated that deciding
           | between pop-sci summaries of "amyloid bad" and "amyloid
           | irrelevant" and directing funding accordingly.
        
         | _zoltan_ wrote:
         | as someone who is not in this field (purely doing CS research):
         | haven't recent advances in ML "solved" most protein structures
         | and made x-ray crystallography obsolete?
        
           | margalabargala wrote:
           | Very much no.
           | 
           | https://www.nature.com/articles/s41592-023-02087-4
        
         | mattkrisiloff wrote:
         | Would you be up to chat sometime? Would love to fund a research
         | startup to work on some of this more -- matt@scifounders.com
        
         | matthewdgreen wrote:
         | I read these paragraphs. I'm incredibly grateful for the
         | context and glad people are working on this. Scientists aren't
         | perfect but science is all we've got when it comes to this
         | shithead if a disease.
        
         | pessimizer wrote:
         | > Who will read nine paragraphs that I think are necessary
         | context for all of this?
         | 
         | They are very interesting, but I'd have to be convinced that
         | they were necessary context. Because the question that I think
         | is important is whether this was true and widespread:
         | 
         | > I think there are a lot of people who feel like they were
         | locked out of funding opportunities because of the focus on
         | amyloid-beta. Maybe this is true, I don't know.
         | 
         | And you don't know. I don't know either.
         | 
         | We can't say that anything would be farther along if these
         | frauds had not happened, because that is a counterfactual. We
         | can just guess that if we spend resources in areas that didn't
         | have as much fraud surrounding them, we would be more likely to
         | be farther along. Any argument otherwise is an argument that
         | the direction and funding of research doesn't ever really
         | matter.
         | 
         | I don't think any avenue of research should be abandoned if
         | anybody still sees any possible value in it. But I know that
         | funding decisions heavily influenced by fraudulent research are
         | not going to be better made than decisions not influenced by
         | fraud; and that if we were making decisions based on fraud over
         | a long period of time, it is safe to assume that there was a
         | loss. If we want to be less likely to repeat this loss, we
         | probably need to change how we evaluate where to allocate
         | funding.
        
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