It is hard to describe how painful was to read about the overwhelming evidence of study manipulation by Masliah and others a few months ago. My father-in-law was diagnosed with this terrible disease in his late fifties, but before that he went through several misdiagnoses, including depression. He lost his job and i am now convinced that it was because he was on early stage of the disease, which affected his memory and ability to communicate. I later learned about this being something under study because apparently is a pattern: https://www.nytimes.com/2024/05/31/business/economy/alzheime... This triggered all kind of troubles as you might imagine.
After that, he went through a violent period and within a few months he could no longer speak or eat on his own. He now wears diapers and we had to hire a professional caregiver to help with his daily routines. Our family impact has been dramatic, we are not a large family so we had to spend a significant amount of resources to help his wife who is his main care giver. We have since received some assistance from the public healthcare system, but it took time, and the support did not keep pace with the rapid progression of his symptoms.
I have seen relatives pass away from other causes but this is by far one of the cruelest ways to die. After a few years of dealing with this disease, i cannot fathom any justification - good or bad - for the massive deception orchestrated, apparently for the sake of Masliag and others' careers. I hope they are held accountable and brought to trial soon for the damage they have caused to society and science.
I work in neurotech and sleep, and our focus on slow-wave enhancement has recently had 3 papers looking at the impact in Alzheimer's.
I'm not a scientist or expert, but we do speak with experts in the field.
What I've gathered from these discussions is that Alzheimer's is likely not a single disease but likely multiple diseases which are currently being lumped into the one label.
The way Alzheimer's is diagnosed is by ruling out other forms of dementia, or other diseases. There is not a direct test for Alzheimer's, which makes sense, because we don't really know what it is, which is why we have the Amyloid Hypothesis, the Diabetes Type 3 hypothesis, etc etc.
I fear the baby is being thrown out with the bathwater here, and we need to be very careful not to vilify the Amyloid Hypotheses, but at the same time, take action against those who falsify research.
Here's some of the recent research in sleep and Alzheimer's
1) Feasibility study with a surprisingly positive result - take with a grain of salt - https://pubmed.ncbi.nlm.nih.gov/37593850/
2) Stimulation in older adults (non-AD) shows positive amyloid response with corresponding improvement in memory - https://pmc.ncbi.nlm.nih.gov/articles/PMC10758173/
Science needs an intervention similar to what the CRM process (https://en.wikipedia.org/wiki/Crew_resource_management) did to tamp down cowboy pilots flying their planes into the sides of mountains because they wouldn't listen to their copilots who were too timid to speak up.
...on the evening of Dec 28, 1978, they experienced a landing gear abnormality. The captain decided to enter a holding pattern so they could troubleshoot the problem. The captain focused on the landing gear problem for an hour, ignoring repeated hints from the first officer and the flight engineer about their dwindling fuel supply, and only realized the situation when the engines began flaming out. The aircraft crash-landed in a suburb of Portland, Oregon, over six miles (10 km) short of the runway
It has been applied to other fields:
Elements of CRM have been applied in US healthcare since the late 1990s, specifically in infection prevention. For example, the "central line bundle" of best practices recommends using a checklist when inserting a central venous catheter. The observer checking off the checklist is usually lower-ranking than the person inserting the catheter. The observer is encouraged to communicate when elements of the bundle are not executed; for example if a breach in sterility has occurred
Maybe not this system exactly, but a new way of doing science needs to be found.
Journals, scientists, funding sources, universities and research institutions are locked in a game that encourages data hiding, publish or perish incentives, and non-reproducible results.
The higher-level problem is that there are tons of scientific papers with falsified data and very few people who care about this. When falsified data is discovered, journals are very reluctant to retract the papers. A small number of poorly-supported people examine papers and have found a shocking number of problems. (For instance, Elisabeth Bik, who you should follow: @elisabethbik.bsky.social) My opinion is that the rate of falsified data is a big deal; there should be an order of magnitude more people checking papers for accuracy and much more action taken. This is kind of like the replication crisis in psychology but with more active fraud.
The article says:
Yet despite decades of research, no treatment has been created that arrests Alzheimer’s cognitive deterioration, let alone reverses it.
Nowhere in the article does it mention that anti-amyloid therapies such as donanemab and lecanemab have so far successfully slowed decline by about 30%. They may not yet be "arresting" (fully stopping) the disease, but it's pretty misleading for the article to completely omit reference to this huge success.
We are currently in the midst of a misguided popular uprising against the amyloid hypothesis. There were several fraudulent studies on amyloid, and those responsible should be handled severely by the scientific community. But these fraudulent studies do not constitute the foundational evidence for the amyloid hypothesis, which remains very solid.
Sadly this stems from a structural problem in biology and medicine, and is far from exclusive to the field of Alzheimer's. Some reforms are urgent, otherwise progress is going to be incredibly slow. The same pattern is repeated again and again. Someone publishes something that looks novel, but is either an exaggeration or a downright lie.
This person begins to attract funding, grant reviews and article reviews. Funding is used to expand beyond reasonable size and co-author as many articles as possible. Reviews mean this person now has the power to block funding and/or publication of competing hypotheses. The wheel spins faster and faster. And then, we know what the outcome is.
The solution is to make sure reviews are truly independent plus limitations on funding, group size and competing interests. I think that tenured researchers that receive public funding should have no stock options nor receive "consulting" fees from private companies. If they want to collaborate with industry, that's absolutely fine, but it should be done pro bono.
Furthermore, if you are a professor who publishes 2 articles per week and is simultaneously "supervising" 15 postdocs and 20 PhD students at 2 different institutions then, except in very few cases, you are no longer a professor but a rent seeker that has no clue what is going on. You just have a very well oiled machine to stamp your name into as many articles as possible.
It's nice to live in a world where actions have consequences. When the media coverage got too much, Marc Tessier-Lavigne finally had to resign as president of Stanford, so he could focus on his job as a Stanford professor.
Like most HN readers I'm in computer science, but I do academic research so I review papers - not a lot, but probably 20-25 a year, sometimes more.
I get paid nothing to do this - it's considered "service", i.e. it's rude to submit a lot of papers and not review any in turn. (it turns out there are a lot of rude people out there) In general no one in academic publishing gets paid anything, although an "area editor" who tries to convince people like me to review papers might get paid a bit if they work at a lower-quality for-profit journal. (other fields have high-quality for-profit journals, but not CS)
Some of the papers I review may be fraudulent. I have no way of figuring this out, it's not my job, and I don't have access to the information I'd need to determine whether they are.
The use of images in certain life sciences papers has made it much easier to detect a certain class of fraud, although even these checks would be difficult for an individual reviewer to perform. (the checks could be integrated with the plagiarism checker typically run on submissions before they are reviewed, and I think some journals are starting to do this)
In CS it would be much more difficult to detect fraud, because there's no equivalent to the standard and easily-compared western blot and photomicrograph images in life sciences papers. However I'll note that a lot of CS venues are starting to have an "artifact evaluation" phase, where authors of accepted papers submit their software and a team of students try to get it to work themselves. It's not mandatory, but most authors try for it - the main purpose is to encourage reproducible science, but it also creates an environment where fraud is more difficult.
(I'm only aware of conferences which have artifact evaluation - none of the journals I know have tried this)
The amyloid hypothesis, as described to me by someone working in the field, is not only wrong, but it is harmful to the patients. His research is studying that it is more probable that the plaques are actually protective and do not cause the memory loss and other disease symptoms directly. This idea was pushed aside and ridiculed for years all because of the greed and lies by people like Eliezer Masliah.
https://pmc.ncbi.nlm.nih.gov/articles/PMC2907530/
https://journals.sagepub.com/doi/abs/10.3233/JAD-2009-1151
https://www.utmb.edu/mdnews/podcast/episode/alzheimer's---co...
Now journalists dunk with science publication fraud, claiming its wider than it could possibly be! It will certainly get engagement!
More burn the bridges science journalism; "the worst that can happen is somehow the common place"; erode trust in institutions more, so and on so on so forth.
We are currently plummeting into nihilism, see you at the bottom, hope the clicks were worth it.
What is the incentive to call out a competitor on their lies?
If you want to be truly cynical, it's to your benefit to NOT call them out; then other-competitors might spin their wheels following the negative results of your competitor when you're not wasting your time chasing the fiction.
Those who would condemn "science" need to explain why their concept is different from listening to the weather report and doing the exact opposite -- that's not a recipe for success, and "science" has gotten far more right than wrong over the years.
I’m a caregiver for my WWP. I wanted to inform PWP that there’s hope, the Uinehealthcentre. com has been of great help. the PD-5 treatment programme they offer has completely help with reversing my wife Parkinson's symptoms.
Say it again and loud. No null publications leads to reproducibility crisis.
Especially in an academic discipline that fundamentally bowing to it's industry counterparts for scraps.
This coming to you from a field which in modern times which reinvented the trapezium rule...
Similar well-founded concerns were raised before:
"How an Alzheimer’s ‘cabal’ thwarted progress toward a cure" (2019) https://news.ycombinator.com/item?id=21911225
How can I trust anything now? I recently asked ChatGPT if learning multiple languages could slow dementia, and now I realized there’s no way to know the answer to this even if I confirm it isn’t hallucinating.
Based on the scale and impact of fraudulent results, I wonder if some form of LLM based approach with supervised fine-tuning could help highlight the actually useful research.
Papers are typically weighted by citations, but in the case of fraud, citations can be misleading. Perhaps there's a way to embed all the known alzheimer's research, then finetune the embeddings using negative labels for known fraudulent studies.
The the resulting embedding space (depending on how its constructed; perhaps with a citation graph under the hood?) might be one way to reweight the existing literature?
related: https://www.statnews.com/2019/06/25/alzheimers-cabal-thwarte... (2019)
not to cure, but to prevent alzheimer's, just eat teaspoon of virgin coconut oil every evening. As bonus you'll get more vivid dreams
The big problem is not science per se but capitalist pharma. Science eventually self corrects but capitalism creates a huge inertia driven by the fact people do not want to lose money and do everything possible to push things as much as they can. So much investments went into the amyloid hypothesis.
The story of $SAVA is paradigmatic. Every neuroscientist knew that stuff was based 100% on fraudulent results but they nevertheless managed to capitalise billions.
adult age is not a disease anymore than childhood is a disease
[dead]
[dead]
[dead]
[dead]
[dead]
[dead]
The article starts with a non-sequitur -- "we have tackled some disease, so we should be able to tackle alzheimer's, but we haven't"
It would be great if opinion articles never made it to the front page, on any media aggregator, anywhere.
They don't make it to the front page of a newspaper.
I am going to point out how much the vibes have shifted here. When earthquake scientists gave false reassurances in the run-up to the 2009 earthquake at L'Acquila, likely contributing to the many deaths there, Italian criminal proceedings resulted. At that time, though, the usual suspects decided that this was science under attack and there was high-level protest and indignation that scientists might face legal consequences for their statements. https://en.wikipedia.org/wiki/2009_L%27Aquila_earthquake#Pro...
https://archive.is/URjfk