I wonder if there are multiple causes of Alzheimer’s, and the variability in outcome is due to the fact that the treatment only is fixing one root cause.
That said, if it turns out that a treatment for some Alzheimer’s is some kind of “brain fluid” dialysis, it would be an amazing breakthrough.
This article soars from hope to hype to skepticism. I guess that's a consequence of reporting on the fringes of science.
In particular, I wish there was more detail on the 100-cohort study where patients experienced "modest improvements" and how that's calculated. Is that average increase of X points on an MMSE, etc.
In my experience in my family, dementia is not a linear slide. My 85yo mother with Alzheimer's will sometimes present very well and you have to really get into conversational details to notice the dementia. On other days, she'll pick up a paperback and try to use it as a phone. Some days she's steady on her feet, some days coordinating all of those muscles is just too much.
Over the course of a couple years, you can track the decline, but it's not a straight line. "Modest improvements" makes me concerned that they measured a valley to a peak. It's only 6 months since the 100-cohort study.
As an ML engineer, I improve models through trial and error. Sometimes a change improves my metrics, and other times it makes them worse, and I just revert it and try something else.
It's scary to think about neurological surgery making progress in a similar way. We may not have a good theoretical understanding of why a procedure works, but we observe positive outcomes in a small number of patients and then start looking into expanding its use.
It reminds me of procedures where doctors sever connections between the two hemispheres of the brain to reduce seizures. I've heard they can reduce symptoms, but disrupting connections in the brain can also have unexpected consequences. I hope we can do better than essentially throwing spaghetti at the wall.
As another MLE who has seen family members go through the disease, I will say the baseline is already pretty bad. So while it would be great to have a complete theory before administering treatments, if it works I’ll take it.
The problem with this stuff is (as the article mentions) is that it’s going to take a while to figure out whether any benefit is just temporary.
I would guess that there are a lot of variables to eliminate too - eg is it possible that just having a surgery and recovering from anaesthesia can yield some of these benefits in some circumstances? Given that we don’t really understand how most inhaled anaesthetics fully work
I've witnessed dementia patients take a fall, and then be dramatically more confused the next couple days. I've also seen them get some kind of social exposure, sunshine, exercise, etc. and present better for several days afterwards. Measuring "how well is the mind working" isn't like reading a digital meter.
Firstly it’s not curing anything, it’s yielding some improvement. But secondly: what surgeries are performed on people with Alzheimer’s disease, let alone ones where cognitive improvement is even going to be monitored or noticed afterwards? (and even if it were noticed: periods of lucidity are not rare. It would probably be ignored)
It seems like you're arguing with this guy for the sake of argument. If anesthetics "yielded some improvement" in Alzheimer's temporarily then any surgery would get the same effect and we would already know about it. And what is the second point you are trying to make here - that zero surgeries are ever performed annually on Alzheimer's patients for any reason? And of the ones that are, the family wouldn't notice the dramatic cognitive improvement shown in this article, but they noticed it here?
I was not trying to say anaesthetics are actually the cure, it’s an example of the kind of elimination that has to be done to prove something is actually effective.
Look up how double blind tests are done on things that involve surgeries (eg implants)
> And of the ones that are, the family wouldn't notice the dramatic cognitive improvement shown in this article, but they noticed it here?
Because they’re primed to look for that improvement because they’re told that is the expected outcome
If you have the money for the surgery, an extra year of cognition is huge. Short-term quality of life improvements are totally worth it if you can afford it.
(Disclaimer: the non-paywalled part of the article did not mention side-effects or complications of the treatment so I don’t know what they are.)
Even if it is temporary, so what? Can't you just repeat it? And wouldn't clearing these drainage channels be harmless (modulo risks of any surgery) even if the theory didn't pan out? If I had early-stage Alzheimer's I'd go to the ends of the Earth and do everything I could to slow it down.
Repeat it? It's not removing a tumor. It's adding a path between lymph nodes and blood vessels. You can't just repeat that. After the surgery that path exists. It's a permanent functional change.
It would be great if it works out, but I believe this treatment has been suspended in China as there are mixed results (ie people have ended up worse).
Being from Scotland I'd trust an NHS evaluation more than random news reports.
But that would suggest that this cures some form of Alzheimer's but not all forms.
If your Alzheimer's is caused by poor drainage due to a one off blockage this would solve it completely, but if its due to something else this would probably just be temporary as the article notes.
Alzheimer's is tricky. The person who is consenting to the procedure may not be the person in the OR. And both parties are vulnerable to scams and snake oil. This procedure needs studies, so there's a clear rate of success we can understand and communicate.
Unfortunately those devastating conditions are exactly where the grifters prey upon people. Some of the people pushing the treatments aren’t grifters in the traditional sense, but they are so invested in the idea of becoming famous for having cured a difficult disease that they lose objectivity and can’t admit when their treatment isn’t working.
There is a lot of history in this. Cancer and autism communities have fallen victim to these schemes as far back as those conditions have been recognized. Every year there is a new batch of researchers who claim they’ve found a cure but the government meanies are preventing them from curing the whole world. They generate a lot of false hope, take a lot of money from desperate patients, and then fade into obscurity after the communities realize nobody is actually getting cured by these treatments.
This happens in every condition where there is not yet a good medical treatment. Long COVID is a good example of a recent condition where hundreds of doctors have claimed to have invented new treatments. They generate a lot of headlines, collect a lot of money from desperate patients before everyone realizes the cure isn’t working, and then they abandon their cure like it never existed.
This is why governments regulate these things. If you assume all of the treatments might work, it seems cruel for governments to get in the way. If you look at the history of how this plays out, they almost never actually have any substance behind them. It’s almost 100% grift or researchers who can’t admit when they’re wrong.
The counterargument I heard recently is that what if doing something with your body ends up causing harm to others. E.g. you suddenly lose the ability to drive coherently. I agree everyone should do whatever they want, but if you drive drunk you're guilty because you should've known better, it's impossible to get a driver's license and not know you're not allowed to drive drunk. But if you do something experimental and are not aware you are no longer capable of driving, are you really at fault? And even if yes, is it that satisfying someone goes to jail considering maybe it would be better if a family of four in the other car is still alive.
No, you lie and provide nothing to this conversation.
Literally in the article which you clearly only skimmed and did not READ "Hong is now running his own trial in South Korea and says that he is finding the same spectacular gains in some individuals, although not in everyone."
Even if you are right, you are using the tone of a conspiracist. You are this close to posting, "They don't want you to know!"
Maybe dial it back a bit? You can be firm in your opinions and have more success in convincing others if you avoid vaguely worded accusations and the like.
FTA: "anecdotally at least, several clinicians say they’ve heard from colleagues in China that the majority of individuals backslide within a year of surgery, echoing broader concerns that any gains might not last."
I believe it was a mistake to approve anti-amyloid drugs like Aducanumab. Big Pharma threatened to stop research on Alzheimer if they couldn't sell this drug and make bumper profits from it. The FDA should never allow itself to be blackmailed in this manner. If drugs don't show a clear improvement, not just the "slowing of the progression" of the disease (which is infinitely debatable and subject to manipulation), they should be rejected.
The amyloid theory is a dead end, a wild goose chase which has led to tunnel vision and wasted three decades of research into Alzheimer. We're essentially back to square one save for some interesting data that viruses may be involved.
This had led to desperate patients seeking help from charlatans and quacks like the one described in this article.
It seems China is repeating similar mistakes the western world did in the 20th century (e.g. psychosurgery, very weak regulations). It's like watching a car seconds before crash and you can't do anything to stop it.
> The rapid adoption, in the absence of hard evidence, prompted Chinese regulators to intervene. Last year, they restricted the procedure to more-formalized clinical research settings, rather than the ad hoc use that had proliferated previously. And Xie, the pioneer of the technique, has been in detention since September for undisclosed reasons.
There is probably also some benefit to being willing to let some harm come to patients in order to quickly determine if treatments are viable or not. Western medicine puts a premium on human life but development of treatments is certainly slowed by that ethos .
It puts a "premium" on life only because all those regulations were written with blood from those who can't defend themselves anymore as those same arguments were used back then as they are today.
Western medicine has been lax on ethos and rigor in the past and we ended up exterminating and neutering large amounts of the population to 'keep the genetic heritage pure'. That is still a major traumatism that forces us to approach medicine with a very strong ethos.
Seems like this treatment is widely reported on and there's interest in running controlled trials to evaluate its actual success rate. It's shown up on HN a lot.
And honestly, caution is valuable here. People with Alzheimer's are extremely vulnerable. As are their loved ones. Ensuring it's got rigorous data so caregivers can understand the tradeoffs seems important. Surgery at an advanced age is risky, no matter what.
That said, if it turns out that a treatment for some Alzheimer’s is some kind of “brain fluid” dialysis, it would be an amazing breakthrough.
In particular, I wish there was more detail on the 100-cohort study where patients experienced "modest improvements" and how that's calculated. Is that average increase of X points on an MMSE, etc.
In my experience in my family, dementia is not a linear slide. My 85yo mother with Alzheimer's will sometimes present very well and you have to really get into conversational details to notice the dementia. On other days, she'll pick up a paperback and try to use it as a phone. Some days she's steady on her feet, some days coordinating all of those muscles is just too much.
Over the course of a couple years, you can track the decline, but it's not a straight line. "Modest improvements" makes me concerned that they measured a valley to a peak. It's only 6 months since the 100-cohort study.
I would guess that there are a lot of variables to eliminate too - eg is it possible that just having a surgery and recovering from anaesthesia can yield some of these benefits in some circumstances? Given that we don’t really understand how most inhaled anaesthetics fully work
I've witnessed dementia patients take a fall, and then be dramatically more confused the next couple days. I've also seen them get some kind of social exposure, sunshine, exercise, etc. and present better for several days afterwards. Measuring "how well is the mind working" isn't like reading a digital meter.
Look up how double blind tests are done on things that involve surgeries (eg implants)
> And of the ones that are, the family wouldn't notice the dramatic cognitive improvement shown in this article, but they noticed it here?
Because they’re primed to look for that improvement because they’re told that is the expected outcome
It did cure some people, it yielded some improvements on average but it did yield extreme improvements in some people. That part isn't controversial.
> (and even if it were noticed: periods of lucidity are not rare. It would probably be ignored)
A year of being able to walk and talk normally when a patient could barely function at all would be noticed for sure.
Cure has a very specific definition. I don't think it applies here.
(Disclaimer: the non-paywalled part of the article did not mention side-effects or complications of the treatment so I don’t know what they are.)
I wouldn't assume you could. I guess that's why people study these things.
Being from Scotland I'd trust an NHS evaluation more than random news reports.
If your Alzheimer's is caused by poor drainage due to a one off blockage this would solve it completely, but if its due to something else this would probably just be temporary as the article notes.
The government shouldn't be in the business of telling people what they can do, or have done, to their own bodies.
There is a lot of history in this. Cancer and autism communities have fallen victim to these schemes as far back as those conditions have been recognized. Every year there is a new batch of researchers who claim they’ve found a cure but the government meanies are preventing them from curing the whole world. They generate a lot of false hope, take a lot of money from desperate patients, and then fade into obscurity after the communities realize nobody is actually getting cured by these treatments.
This happens in every condition where there is not yet a good medical treatment. Long COVID is a good example of a recent condition where hundreds of doctors have claimed to have invented new treatments. They generate a lot of headlines, collect a lot of money from desperate patients before everyone realizes the cure isn’t working, and then they abandon their cure like it never existed.
This is why governments regulate these things. If you assume all of the treatments might work, it seems cruel for governments to get in the way. If you look at the history of how this plays out, they almost never actually have any substance behind them. It’s almost 100% grift or researchers who can’t admit when they’re wrong.
Real life is more complicated.
And the surgeon is in prison according to the article.
Huh. You completely made that up. Where in the article does it say that? Here's the truth from the article:
> Last year, they restricted the procedure to more-formalized clinical research settings,
It is the hallmark of a lowlife to suppress research.
You need to think more.
We are not naive. We know when there is a conflict of interest. The intent to suppress is obvious.
Some conspiracies are real. When money is involved, they are doubly so.
Literally in the article which you clearly only skimmed and did not READ "Hong is now running his own trial in South Korea and says that he is finding the same spectacular gains in some individuals, although not in everyone."
That's very much mixed results.
Maybe dial it back a bit? You can be firm in your opinions and have more success in convincing others if you avoid vaguely worded accusations and the like.
The amyloid theory is a dead end, a wild goose chase which has led to tunnel vision and wasted three decades of research into Alzheimer. We're essentially back to square one save for some interesting data that viruses may be involved.
This had led to desperate patients seeking help from charlatans and quacks like the one described in this article.
> The rapid adoption, in the absence of hard evidence, prompted Chinese regulators to intervene. Last year, they restricted the procedure to more-formalized clinical research settings, rather than the ad hoc use that had proliferated previously. And Xie, the pioneer of the technique, has been in detention since September for undisclosed reasons.
Seems you missed out on 10-15 years of development. Regulation strictness these days rival western.
I favor trials, of course, but the ones suppressing it would rather just bury it.
And honestly, caution is valuable here. People with Alzheimer's are extremely vulnerable. As are their loved ones. Ensuring it's got rigorous data so caregivers can understand the tradeoffs seems important. Surgery at an advanced age is risky, no matter what.