> Within hours of the first injection, the animal brains showed a nearly 45 percent reduction in clumps of amyloid-beta plaques, a hallmark of Alzheimer's disease.
> The mice had previously shown signs of cognitive decline, but after all three doses, the animals performed on par with their healthy peers in spatial learning and memory tasks. The benefits lasted at least six months.
1. This is great news… for mice with Alzheimer’s that don’t mind treatments every 6 months.
2. It’s crazy to think about something like this actually curing Alzheimer’s in humans, even if for just 6 months. Even more so if repeated doses have the same effects.
3. As with all of these studies, mice != humans, but it’s nice to have hope.
Side note: the temporary part of #2 makes me think about The Last Days of Ptolemy Grey [1]. It’s hard to fathom having a relative “come back” like that for a short time. Or even permanently.
This resonates with me particularly strongly, as one of the many failures of my body is that I live with NPH (normal pressure hydrocephalus).
Almost a week ago, I had a spinal tap as a diagnostic test to see if I truly had NPH or if there was a different reason for the bubble of fluid in my brain. An hour after the tap, I felt my arms and legs moving more freely than they had in years, and I was able to move significantly faster than before. And now, a week later, I can feel the stiffness setting in again. I'm sliding my feet more, and I can't move as quickly.
I don't know how to characterize the sense of loss I feel. As my body returns to the pre-spinal tap "normal." I'm left with the fading sensation of a freer movement and a clearer mind, with the hope that one of the treatments for NPH will restore that better self.
I can only imagine, with a bit of horror, the sense someone would have coming out of the fog of Alzheimer's, feeling normal for months. Then the anxiety one might feel, as the Alzheimer's fog returns, and be scared that it might not go away again with the next dose—a real "Flowers for Algernon" moment.
I still need to talk to my neurologist to find out if I qualify for the CFS shunt/drain operation. It would be nice to have a clearer mind and freer body, even if I do become part Borg.
I usually consider dialysis to be the point where treatments start to become very limiting. Twice a week, most people feel tied to their dialysis clinic and cannot go far from it.
Dialysis specifically requires several hours and a specific location and its debilitating. Going to a random pharmacy to take an injection 2x a week would be much simpler.
Being forced to sit in a chair for several hours every few days isn't what makes dialysis so debilitating. It's the loss of kidney function that dialysis doesn't replace, tied with the cardiovascular stress of emptying all the waste from the body at once.
I have an acquaintance who has lived most of his life without kidneys(40 years).
Looking in from the outside, his life seems normal; go to the gym and have a beer or two like anyone would, except for the dialysis trips.
I then have a relative into their late 60's that was very laxed about diabetics within recent years.This has lead to kidney issues.
They are refusing dialysis because of I guess the stigma attached to it.
Now they are experiencing a cognitive decline due to poorly functioning kidneys.
I guess when you want to live you would do whatever it takes.
It's not the size of a backpack but my wife did home hemo dialysis with a machine that had a handle and was portable. We even took it on trips a few times. I forget the weight, but, from memory, was around 10 pounds / 4.5 kg I think. Wife has had a transplant so my home hemo experience is from a few years ago. It may have changed since then.
The machine's portability wasn't the only factor. Needed a clean space to set up. There was a second machine hooked up to the house water lines. It would be used to create dialysate which was pumped into the dialysis machine. You could travel without the water pump, but to replace it, you needed these massive disposable bags of dialysate. Each bag was heavier than the machine itself and they were essential.
I guess with car trips, you could take the pump too to generate dialysate on site but it wasn't designed for portability as much as the main dialysis machine was. Was heavier. We kept it on rollers.
There were other supplies needed too. Saline bags. The dialysis machine had one-time use cartridges that were quite convenient but took up a fair bit of space. All added up to considerable bulk.
We only used the machine at distant locations when we knew we were going to be there for a week or more. One factor that made things a little easier was the the dialysis company was willing to deliver supplies to wherever we were, as long as it was within the US. We didn't have to take weeks worth of supplies. But we did have to take enough supplies to get through the first few days before delivery.
Vacations were rare but doable if we were going by car or if there was a dialysis center at the location. I guess we could have flown with the machine but we didn't trust airline baggage handlers enough to risk it.
There is peritoneal dialysis, which is pretty portable and doesn’t filter the blood (it exchanges peritoneal fluid, which is a lot less invasive). It’s actually quite fascinating how simple the machine is — and in fact, the simplest version of the machine is literally two bags and a couple of valves, completely operated by gravity. Everyone is not eligible for this type of dialysis, however. I don’t remember why.
Oh, also, if you do peritoneal dialysis, it’s daily, whereas hemo dialysis is generally two or three times a week.
You have to be very reliable on a lot of fronts for peritoneal dialysis to work. Sterility is hard to maintain; you can't just wipe it off with alcohol like we do with small IV's because replacing a PD catheter involves going to the hospital for surgery. You have to remember to place and drain your dialysate. And so on.
For someone with meticulousness, educability on maintaining the pieces that go into PD, and a good living situation, it's far better than hemodialysis. But people like that are rarely the ones whose kidneys fail.
My dad tried out a 24/7 IV for a heart medicine. The pump and a bag with a 1 week supply of the medicine fit in a fanny pack sized bag. It worked well, but he's 90 and pulled out the IV line in the middle of the night. He didn't remember doing it. So we decided to discontinue the meds. But I'm sure it would have been fine for a younger, less confused person. Just a bit inconvenient for showering, etc.
If you've ever been to a dialysis center when a patient accidentally pulls out the line you can imagine why. They are thick lines that will rapidly make a huge mess.
I guess though a backpack version probably could be more like an always attached glucose device with just a tiny line.
"The researchers found that engaging in as little as 35 minutes of moderate to vigorous physical activity per week, compared to zero minutes per week, was associated with a 41% lower risk of developing dementia over an average four-year follow-up period. Even for frail older adults—those at elevated risk of adverse health outcomes—greater activity was associated with lower dementia risks.
The researchers found dementia risk decreased with higher amounts of physical activity. Dementia risks were 60% lower in participants in the 35 to 69.9 minutes of physical activity/week category; 63% lower in the 70 to 139.9 minutes/week category; and 69% lower in the 140 and over minutes/week category."
People keep telling they'd sacrifice everyting for an hypothetical silver bullets while doing nothing in their day to day life to mitigate all these disease. Eat clean, exercise, 8 hours of deep good uninterrupted sleep, &c.
3/4th of people are obese or overweight, the average Joe walks like 4k steps a day, people, at large, don't give a shit about health until they get a terminal diagnosis
Which is not that bad. 10k/steps was a made up marketing goal from a speedometer company. The sweet spot is around 7k/steps day, but 4k/steps day is already seeing benefits.
My father was very active well into his 80s, going for 10+km bike rides almost every day, until he got heart trouble. He would still walk for hours every day, often taking the stairs up the local hill, 400+ steps. He still got Alzheimer's. A lighter, later case than he would otherwise had, I'm sure, but still, he doesn't remember what he said 2 minutes ago, asking about the same things over and over again.
So while there are lots of excellent reasons to stay active into old age, it's not a replacement for treatment.
The alternative is 24/7 care in a long-term care facility with multiple RCWs per floor and a couple of RNs. There are definitely enough Human Resources available to support this initiative.
Close to nothing if you live in a multi generational house where people are close by and can take care of each other, thousands per month if you delegate everything to medical practices. I've witnessed both cases, many times
The fact that no money exchanges hands doesn't mean that it costs nothing. The work is still the same. In multigenerational house younger generations pay with their life opportunities for the care.
#2 isn't necessarily so even. They said the effects lasted at least 6 months, not "only". I haven't read the study, but it sounds to me that it was 6 months of success then publish.
Yes, and consider how an animal that lives only 2 years gets Alzheimer's in the first place. They must be genetically engineered to have super turbo Alzheimer's. Normal Alzheimer's doesn't progress so fast I think.
This is a really important thing to keep in mind with these studies, we don't actually know that we're curing Alzheimer's in these mice. We don't even know if mice really get Alzheimer's in the way we do. What we're curing is mice who've been genetically modified to overproduce a protein that's associated with Alzheimer's, and we think that's a good model because the overproduction seems to cause symptoms that look like what Alzheimer's would look like in mice, but it's still just a model.
Human trials may eventually be allowed, but I suspect that the results are preliminary and much work still needs to be done to assess the drug's safety before it makes it to humans.
Let me tell you a story about a biotech startup that I worked at many moons ago.
- We were trying to develop new antibiotics to treat certain bacterial infections.
- We had created a new antibiotic that was chemically similar to an existing, commercially successful antibiotic.
- But our drug was ~2-4× more potent at killing certain pathogenic bacteria than the existing med.
- Sounds good for us, right?
- Well, the commercially successful antibiotic was also toxic to humans if administered for "long" periods (it causes severe anemia if administered for 20+ days [I may not remember the precise details here]).
- Therefore, we were concerned that if our drug was 2-4× more potent at killing the microbes, it might also be 2-4× more toxic to people.
- To obtain approval for human tests, we had to run toxicity tests of our drug using several non-human species. Those results were mixed (toxic in some species, non-toxic in others), but we did eventually get approval.
- Unfortunately, the original concerns were correct: our drug caused severe anemia within ~3 days (again, specifics may be wrong), which means that particular candidate died in Phase 1 (initial human trial assessing drug safety).
Thankfully, the severe anemia was reversible in our test subjects (stop taking the drug, and the anemia went away)
You’re not seeing all the other candidate treatments that made things worse. If it just gives everyone a heart attack immediately the question would be, why didn’t you try this out on mice first?
My body, my choice. I get the restriction on marketing and selling until some degree of safety and perhaps efficacy is demonstrated. But I should be allowed to choose to take the treatment if offered for free, even without any previous study.
That's fair, I guess, but say there were some way for me to sign a contract saying they could test on me should I become afflicted Alzheimer's? Wouldn't there be some sort of legal protection for them, then?
Because I'd happily do it. I've watched multiple family members suffer from some form of severe mental decline and it is horrifying enough to make me willing to sacrifice myself if there is even a sliver of a chance that my sacrifice will help future generations avoid that pain. And since we're all nerds here, we all know that if we want to know if a thing actually works the way we want it to, we have to test it repeatedly in its working environment.
> Wouldn't there be some sort of legal protection for them, then?
Not really, no. A company that unleashed unproven drugs in a vulnerable human population would be sued into oblivion. They would lose in court over and over as judges and juries decided that no, you cannot in fact sign away your right to not be subjected to criminal negligence.
They would very likely be subjected to criminal prosecution as well.
This (the lawsuits) happens all the time. People sign waivers, get hurt, and the courts decide that the level of negligence involved overrides the waiver. Happened a while back at a Jiu Jitsu gym. Someone signed all the waivers and got paralyzed and successfully sued for $46 million. The jury decided that the instructor was criminally negligent.
Things like these are sometimes done for experimental cancer therapies. Granted, the patients are going to die anyway, and the therapy has gone through most of the trials.
Right. They have gone through most of the trials already. That’s key.
You can have a reasonably informed consent if you have some safety data. You can’t really have someone give informed consent about a totally untested drug.
Sure you can. Why not? “I understand this is completely untested and might be poison. My mental competence has been tested and certified by a professional. Being in right mind and having all the pertinent information before me, I still want to inject myself with this. Signed, -Patient”
Something is wrong with your definition of consent if it totally dismisses the patient’s autonomy and right to action.
Our laws don’t really work like that, at least not in the US. Neither criminal nor civil. This might be a shock, but you are generally not allowed to kill people. We have a whole range of laws that make it a crime for you to hurt or kill people.
If you run an unregulated carnival ride and it falls apart and kills everyone, you’re going to prison. The fact that you have everyone sign a waiver that says “I know this might kill me” will not protect you from your own criminal negligence. Nor will it protect you from the lawsuits the families of the deceased will bring.
In your scenario the person giving out untested medication that kills someone would almost certainly be found guilty of criminal negligence if not worse. Based on that same criminal negligence I imagine that the family would be successful in suing.
And yet we have SCUBA dive outfits and mountaineering shops that routinely sell equipment to adventurers, and provide guided services that sometimes do result in deaths. It is not nearly as black and white as you are portraying.
What these all have in common is the notion of informed consent -- I can get PADI certified and then rent SCUBA equipment, and if I then die while cave diving, that is wholly on me not the dive shop operator.
The critical test isn't that safety has been demonstrated, but that potential risks (known or unknown) have been disclosed and understood. I can go out and do risky things, if I want, under those conditions.
And yet I am not allowed to make my own medicine, or to take a completely unproven medicine that might very well kill me, even if I am fully cognizant of the risks involved. The rules regarding medicine and drugs really are different from how we handle other risks in our society.
> The critical test isn't that safety has been demonstrated, but that potential risks (known or unknown) have been disclosed and understood.
Yes and no. For some things it doesn’t matter if the risk is understood. You can drive yourself to a boiling hot spring, put on your scuba gear, and dive in, killing yourself horribly. I cannot take you to the same hot spring, give you scuba gear, and let you jump in. It doesn’t matter if you sign the waivers saying it will probably kill you. The risk is too high and I will still be criminally liable for exposing you to this risk.
In the case of a completely untested medicine, the risk is unknown. It could be the cure for cancer. It could be a placebo. It could melt your skin off. There is no way to even attempt to explain the risk because the danger is unknown. You can’t go in front of a city and argue that the patient knew the risks, because you don’t know the risks.
> And yet I am not allowed to make my own medicine
I’m not sure what that means. I’m pretty sure you can mix up bleach and ammonia in your kitchen and drink it if you want hoping it cures Covid. You can make whatever “medicines” you want so long as they don’t involve controlled substances.
If you mean you can’t pay someone else to manufacture untested medications for you, yeah, probably not. Because that someone else becomes criminally liable for the stupidity they facilitate.
> I am saying it shouldn't be that way.
I’m not sure the current rules are that bad. I’d take this over scammers being legally able to sell poison as medicine so long as they can get the buyers to sign a document saying they know it’s poison. “The FDA makes me get you to sign this. Wink wink.”
> You can make whatever “medicines” you want so long as they don’t involve controlled substances.
In the USA at least, it is against federal law to manufacture any pharmaceutical without license, irregardless of whether it is a controlled substance or ever sold.
I don’t know the actual laws about pharmaceuticals. This seems 100% at odds with the claim you made just below that making your own vaccine would have been legal, though.
Regardless, this is really a separate question from whether you should be able to legally permit others to be criminally negligent towards you.
Vaccines of the type mentioned in the other comment are not pharmaceuticals. They do not have a method of direct interference in the biochemistry of the body. The nasal vaccine would have been totally inert, and neither injected nor ingested, so it rather uniquely fell outside of regulator authority, so long as we weren't going to sell or advertise it. Oversimplified, it would have basically involved snorting inactivated spike proteins.
But anything that is ingested (food) or has biochemical interactions (drugs) are regulated and illegal to produce outside of license. Only in the case of small-scale food stuffs are there safe harbor exemptions (e.g. for mom-and-pop bakeries).
At the start of the covid epidemic in 2020, I had access to a lab and the know-how to make a nasal vaccine. I, and a few friends, tried to do this. We would only have made it for ourselves, and no one else, and shared the results with researchers. The lab -- which was just renting us equipment and bench space, not involved at all -- backed out when they were threatened by the FDA to lose government contracts for processing PCR test kits. What we were doing was not illegal, as clearly indicated by the regulators using other means available to them to shut it down.
I have family members suffering from Alzheimer's, with a probably genetic pre-disposition. Getting consent from someone who is already pretty far gone is questionable, but some who have not yet shown symptoms have expressed interest in signing pre-authorized directives in advance to permit these kinds of risky experimentation once they are clearly at the end of their good years. That is not legally possible under the FDA authorization laws & current regulations.
The main reason for all of this, is scams. Nutjobs without any medical background making claims without any scientific evidence.
Or scam artists putting sawdust from a "special tree" into a bottle, and saying it cured his aunt, so it will cure you! If you look at the history of such things, it's just a constant battle against people being fleeced out of money.
Con artists (and some of these wear lab coats and are quite professional in appearance and speak) know that desperation means easy prey. It's disgusting, but there it is.
And it wasn't just a little problem. It was a huge problem. If the legal framework we have in place was torn down, you'd see all that re-emerge in a second.
I agree that there should indeed be a way to balance snail oil salesman techniques, with the choice of someone in a dire circumstance. I did once read that there are FDA approved methods to get in on early stage/pre-clinical trials. These are targeted for people with severe conditions. People aren't being heartless here.
But at the same time, loved ones will litigate to get money back from scam artists. This also includes going after doctors or facilities or anyone willing to enable such actions. And if treatments go sideways, and no one validated that it was anything more than made up gibberish? The lawsuits will fly then, too. The cops may follow.
And it should be this way
Truth is, you are free to imbibe and consume anything you want. No one can really stop you. And whatever method is being used here, I'm sure you could replicate it, buy the hardware, and so on. You are free to do this.
And no, I am not allowed to imbibe and consume anything I want (see war on drugs), nor is someone allowed to make a drug for me, even if they give it to me for free.
I am not free to just make a medication on my own. I tried this. The lab I was going to rent backed out when the FDA threatened shutting them down.
Human can’t consent in this case but they can feel immense pain and suffering still in ways that failed experimentation could invoke. Which may be worse than further decay and eventual death.
In many countries it's fairly easy to consent to euthanization. So these people could consent to participation in the study followed by immediate euthanization if the experiment fails and something worse than further decay awaits, no?
There is plenty of data that shows that people are bad judges of their future opinions. “If X happened to me, I wouldn’t want to live anymore” often turns out to not be true.
That makes it questionably whether consent years or even months ago implies consent now.
And yes, that is very problematic in cases such as Alzheimer’s where people cannot consent now.
These are untested treatments with unknown impacts. Consider playing Russian roulette with the patient. The risk isn't the same but the outcomes have the same range. From nothing to death.
I'd say that depends on how effective something is. If a treatment makes significant changes to most of the patients, you can have sufficient effectiveness proof before you're halfway done with the phase 1 safety trial.
It’s pretty clear that the commenter you’re responding to is making the point that a treatment effective in mice still has a long way to go before it’s viable for use on humans, assuming it is ever viable to use on humans.
Mice and humans are quite different, and whilst it looks like this treatment actually reverses the effects of dementia in mice, it’s far from clear that it would have the same impact on humans. By the time people start exhibiting Alzheimer’s symptoms, the brain will already have sustained quite a lot of damage - by which I mean death of neurons - so it’s hard to see how this would actually reverse the disease, as opposed to simply slowing or halting its progression, without these neurons being replaced.
Most people start exhibiting Alzheimer's symptoms long before they develop full-blown Alzheimer's. Starting treatment when a person has only taken a small amount of damage, reversing what would go on to cause further damage, could be a really big deal.
So far all the prior Amyloid clearing drugs did not cause recovery in people despite doing so in mice. Its meant a lot of researchers now aren't convinced that the Beta Amyloid is the problem in Alzheimer's. I hope this one ends up differently, its definitely a lot faster and more effective than the others at clearing.
See https://www.astralcodexten.com/p/in-defense-of-the-amyloid-h... for an IMO compelling argument that amyloid really is the underlying cause. The theory is that amyloid buildup causes misfolded tau proteins which cause the cognitive damage. So reducing amyloid in people already suffering from Alzheimer's doesn't do much because they already have excessive tau; at best it might slow down the progression.
If successfull it could slow progression, and with better detection eventually greatly reduce the impact. Of course the whole thing could not happen, but i don't think we can say it will not happen right now.
Well that's depressing. My biggest fear, and this isn't a bad setup for a joke, is early-onset Alzheimers. I don't think I'm especially high-risk for it, but I did have a single great-grandfather who got it so technically it does run in my family. It seems so horrible, having your brain sort of deteriorate and losing all your memories, and being a burden to everyone.
Ideally I never get it, but if I do get I hope it's in like my late 90's, or even better by the time I get it they already have a cure, though the fact this might not work for humans makes me a little sad.
there’s some interesting treatment in china that seems promising. something about unclogging drains in the neck. friend told me it looked ‘possible’.
the whole western field is 15-20 years behind because some researcher lied about plaque data and everyone spent all their time chasing the lead. I think you’ll see useful therapies in 15-20 years from the west, maybe sooner if all the some ai hype pans out.
or the Chinese thing turns out to work! can’t tell myself. there’s probably an American who will try it at some point and publish a case study. Very tough to judge Chinese papers..
“Despite this rapid adoption and ‘miraculous effects’ from non-academic sources, no other country has reported clinical applications or clinical trials of LVA for AD treatment so far, raising questions about its mechanism, efficacy and implications.”
China has an actual medical establishment. The fact that the treat this as homeopathy should give one pause.
fine fine. Let me speak to you like you're a colleague and not a hn commenter that you can be upfront with:
As a practicing clinician, I must express significant reservations regarding therapeutic agents emerging from China, particularly those rooted in traditional Chinese medicine (TCM). In the absence of rigorous, peer-reviewed validation through randomized controlled trials (RCTs) conducted under Western regulatory standards, such interventions are frequently met with skepticism within the medical community. The prevailing perception among Western practitioners is that TCM-based therapies often lack robust empirical evidence, bearing a conceptual resemblance to homeopathic modalities, which are similarly contentious due to limited mechanistic clarity and inconsistent clinical outcomes. When considering novel pharmacotherapies developed in China, especially those in early-phase clinical trials or lacking approval from regulatory bodies such as the FDA or EMA, the Western medical establishment tends to approach them with caution. For instance, a colleague proposing a TCM-derived treatment would likely feel compelled to provide substantial reassurances to counter the inherent skepticism surrounding its efficacy and safety profile. This is not to dismiss the potential of such innovations outright, but rather to underscore the critical need for transparent, reproducible data to substantiate claims of therapeutic breakthroughs, particularly when these agents remain confined to regional use without broader dissemination in Western markets.
I used to wonder why drs never comment on this site and I'm starting to understand why
My guess is that removing Beta Amyloid plaques is not a cure. However, it may be a preventative, the trick being to remove plaque before damage turns into Alzheimer's.
Even if it is later proved that Amyloids are NOT at fault, doesn’t the ability to remove them effectively improve our ability to make that very determination? My impression of this is at the very worst it isolates that variable and pushes the overall understanding forward significantly.
Per sibling comments, if this ceases or slows the progression of damage, that holds value. It's hard to measure quality of memory in mice so we don't even know what this found "recovery" means. But it still has immense value as a preventative.
I wonder if this could be used in cases of central amyloid angiopathy. I had a family member whose blood vessels in the brain essentially turned into fragile glass from this (and ultimately hemorrhaged).
Consenting Alzheimer's patients is ethically tricky even at early stages of the disease. Just as it is for anyone staring down the barrel at a particularly nasty degenerative disease.
I'm with you though. I know I'd want it more than the Alzheimer's.
There is also this study (https://doi.org/10.1002/trc2.70101), showing some benefit regarding cognition in alzheimers patients. AFAIK it's the first human trial in this context though, so it is still very preliminary.
Here is the big question: How profitable would this be for big pharma if it really worked? If the answer isn't an enormous number, this isn't going anywhere beyond the researchers who published their work.
If the cost to the UK is reported to be 42 billion per year [0] (need to do more verification on this) and I quickly couldn’t see a figure for the US, then I believe there is an argument for a nationalisation policy where the government writes a very large cheque to the company and then makes the treatment free to everyone.
A bit socialisation of health care for some but the benefits to the economy may well be worth the trade alone, never mind the individual benefits
To play the devils advocate, does that take into the "cost" to the government if pensioners are living longer because Alzheimers was cured? I could easily see this turning into a debate behind politicians closed doors of
"If "x" % of the population has their life is extended an average of "y" years, how much more does that cost in pension payouts over the life of the individual vs the medical savings from curing Alzheimers?"
The problem is, you're not just writing a large cheque in return for a working treatment. You're writing a large cheque to roll the dice on some research that might (and probably won't, statistically) result in a working treatment. So you need a very large cheque so that you can fund multiple research projects in the hopes that one of them will give you a treatment. Even then, there's the possibility that none of them will work and you've got nothing to show for any of the money spent.
> Within hours of the first injection, the animal brains showed a nearly 45 percent reduction in clumps of amyloid-beta plaques, a hallmark of Alzheimer's disease.
> The mice had previously shown signs of cognitive decline, but after all three doses, the animals performed on par with their healthy peers in spatial learning and memory tasks. The benefits lasted at least six months.
1. This is great news… for mice with Alzheimer’s that don’t mind treatments every 6 months.
2. It’s crazy to think about something like this actually curing Alzheimer’s in humans, even if for just 6 months. Even more so if repeated doses have the same effects.
3. As with all of these studies, mice != humans, but it’s nice to have hope.
Side note: the temporary part of #2 makes me think about The Last Days of Ptolemy Grey [1]. It’s hard to fathom having a relative “come back” like that for a short time. Or even permanently.
[1] https://www.imdb.com/title/tt13820498
#2 reminds me more of *Flowers for Algernon"
This resonates with me particularly strongly, as one of the many failures of my body is that I live with NPH (normal pressure hydrocephalus).
Almost a week ago, I had a spinal tap as a diagnostic test to see if I truly had NPH or if there was a different reason for the bubble of fluid in my brain. An hour after the tap, I felt my arms and legs moving more freely than they had in years, and I was able to move significantly faster than before. And now, a week later, I can feel the stiffness setting in again. I'm sliding my feet more, and I can't move as quickly.
I don't know how to characterize the sense of loss I feel. As my body returns to the pre-spinal tap "normal." I'm left with the fading sensation of a freer movement and a clearer mind, with the hope that one of the treatments for NPH will restore that better self.
I can only imagine, with a bit of horror, the sense someone would have coming out of the fog of Alzheimer's, feeling normal for months. Then the anxiety one might feel, as the Alzheimer's fog returns, and be scared that it might not go away again with the next dose—a real "Flowers for Algernon" moment.
I still need to talk to my neurologist to find out if I qualify for the CFS shunt/drain operation. It would be nice to have a clearer mind and freer body, even if I do become part Borg.
fascinating post, thank you
If this was effective on humans I think most people would accept having treatments 2x a year
One must live a very privileged life to mind a 2x a year inconvenience in exchange for a working brain.
I wouldn't mind 10x a day injections if it keeps Alzheimer's at bay. Actually, I wouldn't mind a continuous IV drip.
I usually consider dialysis to be the point where treatments start to become very limiting. Twice a week, most people feel tied to their dialysis clinic and cannot go far from it.
Dialysis specifically requires several hours and a specific location and its debilitating. Going to a random pharmacy to take an injection 2x a week would be much simpler.
Being forced to sit in a chair for several hours every few days isn't what makes dialysis so debilitating. It's the loss of kidney function that dialysis doesn't replace, tied with the cardiovascular stress of emptying all the waste from the body at once.
Did anyone say that?
And plenty of people living with diabetes manage to self-medicate with injections multiple times a day.
I have an acquaintance who has lived most of his life without kidneys(40 years). Looking in from the outside, his life seems normal; go to the gym and have a beer or two like anyone would, except for the dialysis trips.
I then have a relative into their late 60's that was very laxed about diabetics within recent years.This has lead to kidney issues. They are refusing dialysis because of I guess the stigma attached to it. Now they are experiencing a cognitive decline due to poorly functioning kidneys.
I guess when you want to live you would do whatever it takes.
Why has nobody made a backpack dialysis machine so you can keep going about your day?
It's not the size of a backpack but my wife did home hemo dialysis with a machine that had a handle and was portable. We even took it on trips a few times. I forget the weight, but, from memory, was around 10 pounds / 4.5 kg I think. Wife has had a transplant so my home hemo experience is from a few years ago. It may have changed since then.
The machine's portability wasn't the only factor. Needed a clean space to set up. There was a second machine hooked up to the house water lines. It would be used to create dialysate which was pumped into the dialysis machine. You could travel without the water pump, but to replace it, you needed these massive disposable bags of dialysate. Each bag was heavier than the machine itself and they were essential.
I guess with car trips, you could take the pump too to generate dialysate on site but it wasn't designed for portability as much as the main dialysis machine was. Was heavier. We kept it on rollers.
There were other supplies needed too. Saline bags. The dialysis machine had one-time use cartridges that were quite convenient but took up a fair bit of space. All added up to considerable bulk.
We only used the machine at distant locations when we knew we were going to be there for a week or more. One factor that made things a little easier was the the dialysis company was willing to deliver supplies to wherever we were, as long as it was within the US. We didn't have to take weeks worth of supplies. But we did have to take enough supplies to get through the first few days before delivery.
Vacations were rare but doable if we were going by car or if there was a dialysis center at the location. I guess we could have flown with the machine but we didn't trust airline baggage handlers enough to risk it.
There is peritoneal dialysis, which is pretty portable and doesn’t filter the blood (it exchanges peritoneal fluid, which is a lot less invasive). It’s actually quite fascinating how simple the machine is — and in fact, the simplest version of the machine is literally two bags and a couple of valves, completely operated by gravity. Everyone is not eligible for this type of dialysis, however. I don’t remember why.
Oh, also, if you do peritoneal dialysis, it’s daily, whereas hemo dialysis is generally two or three times a week.
You have to be very reliable on a lot of fronts for peritoneal dialysis to work. Sterility is hard to maintain; you can't just wipe it off with alcohol like we do with small IV's because replacing a PD catheter involves going to the hospital for surgery. You have to remember to place and drain your dialysate. And so on.
For someone with meticulousness, educability on maintaining the pieces that go into PD, and a good living situation, it's far better than hemodialysis. But people like that are rarely the ones whose kidneys fail.
My dad tried out a 24/7 IV for a heart medicine. The pump and a bag with a 1 week supply of the medicine fit in a fanny pack sized bag. It worked well, but he's 90 and pulled out the IV line in the middle of the night. He didn't remember doing it. So we decided to discontinue the meds. But I'm sure it would have been fine for a younger, less confused person. Just a bit inconvenient for showering, etc.
If you've ever been to a dialysis center when a patient accidentally pulls out the line you can imagine why. They are thick lines that will rapidly make a huge mess.
I guess though a backpack version probably could be more like an always attached glucose device with just a tiny line.
A combination of not quite feasible, not quite usable if created, not quite safe.
There are portable ones you can self administer overnight.
> wouldn't mind 10x a day injections if it keeps Alzheimer's at bay. Actually, I wouldn't mind a continuous IV drip.
There seems to be a much better way:
https://publichealth.jhu.edu/2025/small-amounts-of-moderate-...
"The researchers found that engaging in as little as 35 minutes of moderate to vigorous physical activity per week, compared to zero minutes per week, was associated with a 41% lower risk of developing dementia over an average four-year follow-up period. Even for frail older adults—those at elevated risk of adverse health outcomes—greater activity was associated with lower dementia risks.
The researchers found dementia risk decreased with higher amounts of physical activity. Dementia risks were 60% lower in participants in the 35 to 69.9 minutes of physical activity/week category; 63% lower in the 70 to 139.9 minutes/week category; and 69% lower in the 140 and over minutes/week category."
People keep telling they'd sacrifice everyting for an hypothetical silver bullets while doing nothing in their day to day life to mitigate all these disease. Eat clean, exercise, 8 hours of deep good uninterrupted sleep, &c.
3/4th of people are obese or overweight, the average Joe walks like 4k steps a day, people, at large, don't give a shit about health until they get a terminal diagnosis
>the average Joe walks like 4k steps a day
Which is not that bad. 10k/steps was a made up marketing goal from a speedometer company. The sweet spot is around 7k/steps day, but 4k/steps day is already seeing benefits.
Not everyone can just choose to get 8 hours of uninterrupted sleep! I’d love to.
My father was very active well into his 80s, going for 10+km bike rides almost every day, until he got heart trouble. He would still walk for hours every day, often taking the stairs up the local hill, 400+ steps. He still got Alzheimer's. A lighter, later case than he would otherwise had, I'm sure, but still, he doesn't remember what he said 2 minutes ago, asking about the same things over and over again.
So while there are lots of excellent reasons to stay active into old age, it's not a replacement for treatment.
Apples and oranges.
You're talking about prevention, but this is about cure / treatment.
Once you have already have Alzheimer's, exercise isn't going to save you.
>You're talking about prevention, but this is about cure / treatment
Not "apples vs oranges". More like "diabetes vs healthy diet".
Most wouldn't need treatment if they worked at prevention.
Doesn't fully correct for different biaises like healthy user bias so it proves association more than causality.
What am I to infer from this? That people prone to dementia tend to have less energy for voluntary vigorous physical activity?
If not, why not?
>vigorous physical activity
140 minutes/week is really really far from vigorous.
"vigorous" isn't a period of time or an amount of time per week. It describes the level of physical activity, not the amount.
Might be confusing terms here. Vigorous exercise tends to describe high intensity rather than high volume.
If it was effective on humans I think people would accept daily treatments, were it to be necessary - Alzheimer’s is just that awful.
The alternative is 24/7 care in a long-term care facility with multiple RCWs per floor and a couple of RNs. There are definitely enough Human Resources available to support this initiative.
Of course, but that’s assuming:
1. There aren’t serious side effects that make it more of a tradeoff
2. The price isn’t on the order of 6-7 figures (or possibly less for some)
As someone close to a severe Alzheimer’s case - I would personally write a check for $100K in a heartbeat for a treatment that worked.
And yes - I mean I would do that every 6 months.
I’m curious: Do you have any idea what care for such situations costs today?
I don’t, no.
But my point isn’t so much about willingness to pay for such a treatment, but ability to pay for such a treatment.
My understanding is that some treatments like this are sometimes not covered by insurance, so only high income individuals are able to afford them.
On the other hand, long-term care often is covered by insurance, and the insurance is more affordable.
Close to nothing if you live in a multi generational house where people are close by and can take care of each other, thousands per month if you delegate everything to medical practices. I've witnessed both cases, many times
The fact that no money exchanges hands doesn't mean that it costs nothing. The work is still the same. In multigenerational house younger generations pay with their life opportunities for the care.
#2 isn't necessarily so even. They said the effects lasted at least 6 months, not "only". I haven't read the study, but it sounds to me that it was 6 months of success then publish.
Yes, and consider how an animal that lives only 2 years gets Alzheimer's in the first place. They must be genetically engineered to have super turbo Alzheimer's. Normal Alzheimer's doesn't progress so fast I think.
You DNRTFA. It explains that there are test strains of mice with a genetic condition that predisposes them to Alzheimer's-like conditions.
As always, there's no guarantee that it will work IRL on Homo sapiens.
This is a really important thing to keep in mind with these studies, we don't actually know that we're curing Alzheimer's in these mice. We don't even know if mice really get Alzheimer's in the way we do. What we're curing is mice who've been genetically modified to overproduce a protein that's associated with Alzheimer's, and we think that's a good model because the overproduction seems to cause symptoms that look like what Alzheimer's would look like in mice, but it's still just a model.
Also, lab mice only live for ~2 years. A study of mice for significantly longer than that doesn't make sense.
I immediately thought of Awakenings https://en.wikipedia.org/wiki/Awakenings_(book) also.
The Last Days of Ptolemy Grey makes me think of Flowers for Algernon.
https://raio.org/FlowersForAlgernon.pdf
https://en.wikipedia.org/wiki/Flowers_for_Algernon
I don’t know why this isn’t a case where human subjects for the tests aren’t allowed.
Human trials may eventually be allowed, but I suspect that the results are preliminary and much work still needs to be done to assess the drug's safety before it makes it to humans.
Let me tell you a story about a biotech startup that I worked at many moons ago.
- We were trying to develop new antibiotics to treat certain bacterial infections.
- We had created a new antibiotic that was chemically similar to an existing, commercially successful antibiotic.
- But our drug was ~2-4× more potent at killing certain pathogenic bacteria than the existing med.
- Sounds good for us, right?
- Well, the commercially successful antibiotic was also toxic to humans if administered for "long" periods (it causes severe anemia if administered for 20+ days [I may not remember the precise details here]).
- Therefore, we were concerned that if our drug was 2-4× more potent at killing the microbes, it might also be 2-4× more toxic to people.
- To obtain approval for human tests, we had to run toxicity tests of our drug using several non-human species. Those results were mixed (toxic in some species, non-toxic in others), but we did eventually get approval.
- Unfortunately, the original concerns were correct: our drug caused severe anemia within ~3 days (again, specifics may be wrong), which means that particular candidate died in Phase 1 (initial human trial assessing drug safety).
Thankfully, the severe anemia was reversible in our test subjects (stop taking the drug, and the anemia went away)
You’re not seeing all the other candidate treatments that made things worse. If it just gives everyone a heart attack immediately the question would be, why didn’t you try this out on mice first?
My body, my choice. I get the restriction on marketing and selling until some degree of safety and perhaps efficacy is demonstrated. But I should be allowed to choose to take the treatment if offered for free, even without any previous study.
Your body your choice has no application here. No one is compromising your bodily autonomy.
The regulation is to ensure a working marketplace - which is fundamentally a collection of humans interacting.
The regulation is to prevent predictable abuses of market power.
That's fair, I guess, but say there were some way for me to sign a contract saying they could test on me should I become afflicted Alzheimer's? Wouldn't there be some sort of legal protection for them, then?
Because I'd happily do it. I've watched multiple family members suffer from some form of severe mental decline and it is horrifying enough to make me willing to sacrifice myself if there is even a sliver of a chance that my sacrifice will help future generations avoid that pain. And since we're all nerds here, we all know that if we want to know if a thing actually works the way we want it to, we have to test it repeatedly in its working environment.
> Wouldn't there be some sort of legal protection for them, then?
Not really, no. A company that unleashed unproven drugs in a vulnerable human population would be sued into oblivion. They would lose in court over and over as judges and juries decided that no, you cannot in fact sign away your right to not be subjected to criminal negligence. They would very likely be subjected to criminal prosecution as well.
This (the lawsuits) happens all the time. People sign waivers, get hurt, and the courts decide that the level of negligence involved overrides the waiver. Happened a while back at a Jiu Jitsu gym. Someone signed all the waivers and got paralyzed and successfully sued for $46 million. The jury decided that the instructor was criminally negligent.
Things like these are sometimes done for experimental cancer therapies. Granted, the patients are going to die anyway, and the therapy has gone through most of the trials.
Right. They have gone through most of the trials already. That’s key.
You can have a reasonably informed consent if you have some safety data. You can’t really have someone give informed consent about a totally untested drug.
Sure you can. Why not? “I understand this is completely untested and might be poison. My mental competence has been tested and certified by a professional. Being in right mind and having all the pertinent information before me, I still want to inject myself with this. Signed, -Patient”
Something is wrong with your definition of consent if it totally dismisses the patient’s autonomy and right to action.
Our laws don’t really work like that, at least not in the US. Neither criminal nor civil. This might be a shock, but you are generally not allowed to kill people. We have a whole range of laws that make it a crime for you to hurt or kill people.
If you run an unregulated carnival ride and it falls apart and kills everyone, you’re going to prison. The fact that you have everyone sign a waiver that says “I know this might kill me” will not protect you from your own criminal negligence. Nor will it protect you from the lawsuits the families of the deceased will bring.
In your scenario the person giving out untested medication that kills someone would almost certainly be found guilty of criminal negligence if not worse. Based on that same criminal negligence I imagine that the family would be successful in suing.
And yet we have SCUBA dive outfits and mountaineering shops that routinely sell equipment to adventurers, and provide guided services that sometimes do result in deaths. It is not nearly as black and white as you are portraying.
What these all have in common is the notion of informed consent -- I can get PADI certified and then rent SCUBA equipment, and if I then die while cave diving, that is wholly on me not the dive shop operator.
The critical test isn't that safety has been demonstrated, but that potential risks (known or unknown) have been disclosed and understood. I can go out and do risky things, if I want, under those conditions.
And yet I am not allowed to make my own medicine, or to take a completely unproven medicine that might very well kill me, even if I am fully cognizant of the risks involved. The rules regarding medicine and drugs really are different from how we handle other risks in our society.
I am saying it shouldn't be that way.
> The critical test isn't that safety has been demonstrated, but that potential risks (known or unknown) have been disclosed and understood.
Yes and no. For some things it doesn’t matter if the risk is understood. You can drive yourself to a boiling hot spring, put on your scuba gear, and dive in, killing yourself horribly. I cannot take you to the same hot spring, give you scuba gear, and let you jump in. It doesn’t matter if you sign the waivers saying it will probably kill you. The risk is too high and I will still be criminally liable for exposing you to this risk.
In the case of a completely untested medicine, the risk is unknown. It could be the cure for cancer. It could be a placebo. It could melt your skin off. There is no way to even attempt to explain the risk because the danger is unknown. You can’t go in front of a city and argue that the patient knew the risks, because you don’t know the risks.
> And yet I am not allowed to make my own medicine
I’m not sure what that means. I’m pretty sure you can mix up bleach and ammonia in your kitchen and drink it if you want hoping it cures Covid. You can make whatever “medicines” you want so long as they don’t involve controlled substances.
If you mean you can’t pay someone else to manufacture untested medications for you, yeah, probably not. Because that someone else becomes criminally liable for the stupidity they facilitate.
> I am saying it shouldn't be that way.
I’m not sure the current rules are that bad. I’d take this over scammers being legally able to sell poison as medicine so long as they can get the buyers to sign a document saying they know it’s poison. “The FDA makes me get you to sign this. Wink wink.”
> You can make whatever “medicines” you want so long as they don’t involve controlled substances.
In the USA at least, it is against federal law to manufacture any pharmaceutical without license, irregardless of whether it is a controlled substance or ever sold.
I don’t know the actual laws about pharmaceuticals. This seems 100% at odds with the claim you made just below that making your own vaccine would have been legal, though.
Regardless, this is really a separate question from whether you should be able to legally permit others to be criminally negligent towards you.
Vaccines of the type mentioned in the other comment are not pharmaceuticals. They do not have a method of direct interference in the biochemistry of the body. The nasal vaccine would have been totally inert, and neither injected nor ingested, so it rather uniquely fell outside of regulator authority, so long as we weren't going to sell or advertise it. Oversimplified, it would have basically involved snorting inactivated spike proteins.
But anything that is ingested (food) or has biochemical interactions (drugs) are regulated and illegal to produce outside of license. Only in the case of small-scale food stuffs are there safe harbor exemptions (e.g. for mom-and-pop bakeries).
While there are almost certainly contracts of that nature, this argument is mixing up individual decisions vs market/group behavior.
If you read that statement anywhere other than this thread, it would be part of a cautionary tale.
At the start of the covid epidemic in 2020, I had access to a lab and the know-how to make a nasal vaccine. I, and a few friends, tried to do this. We would only have made it for ourselves, and no one else, and shared the results with researchers. The lab -- which was just renting us equipment and bench space, not involved at all -- backed out when they were threatened by the FDA to lose government contracts for processing PCR test kits. What we were doing was not illegal, as clearly indicated by the regulators using other means available to them to shut it down.
I have family members suffering from Alzheimer's, with a probably genetic pre-disposition. Getting consent from someone who is already pretty far gone is questionable, but some who have not yet shown symptoms have expressed interest in signing pre-authorized directives in advance to permit these kinds of risky experimentation once they are clearly at the end of their good years. That is not legally possible under the FDA authorization laws & current regulations.
Someone close to me is also losing their faculties.
We put locks on doors not because we wish to inconvenience good people. We put locks on doors to dissuade malicious people.
I do not remember the cautionary tales that resulted in these laws. I do know that these cases do exist.
>My body, my choice
This is not available to you yet. Their drug, their choice.
Nobody will offer it to you though. And if they don't even get it to work in an animal model, then for all intents and purposes it doesn't even exist.
The main reason for all of this, is scams. Nutjobs without any medical background making claims without any scientific evidence.
Or scam artists putting sawdust from a "special tree" into a bottle, and saying it cured his aunt, so it will cure you! If you look at the history of such things, it's just a constant battle against people being fleeced out of money.
Con artists (and some of these wear lab coats and are quite professional in appearance and speak) know that desperation means easy prey. It's disgusting, but there it is.
And it wasn't just a little problem. It was a huge problem. If the legal framework we have in place was torn down, you'd see all that re-emerge in a second.
I agree that there should indeed be a way to balance snail oil salesman techniques, with the choice of someone in a dire circumstance. I did once read that there are FDA approved methods to get in on early stage/pre-clinical trials. These are targeted for people with severe conditions. People aren't being heartless here.
But at the same time, loved ones will litigate to get money back from scam artists. This also includes going after doctors or facilities or anyone willing to enable such actions. And if treatments go sideways, and no one validated that it was anything more than made up gibberish? The lawsuits will fly then, too. The cops may follow.
And it should be this way
Truth is, you are free to imbibe and consume anything you want. No one can really stop you. And whatever method is being used here, I'm sure you could replicate it, buy the hardware, and so on. You are free to do this.
It's just that no one wants to help.
So you are free.
That’s why said “if offered for free.”
And no, I am not allowed to imbibe and consume anything I want (see war on drugs), nor is someone allowed to make a drug for me, even if they give it to me for free.
I am not free to just make a medication on my own. I tried this. The lab I was going to rent backed out when the FDA threatened shutting them down.
>nor is someone allowed to make a drug for me, even if they give it to me for free.
Nutjobs and snake-oil are not just for-profit. See cults. See bizarro medical claims from kooks. See flat eathers.
>I am not free to just make a medication on my own. I tried this. The lab I was going to rent backed out when the FDA threatened shutting them down.
If somebody is going to rent a lab to "make a medication of their own", it's best that they're kept out of it.
Human can’t consent in this case but they can feel immense pain and suffering still in ways that failed experimentation could invoke. Which may be worse than further decay and eventual death.
In many countries it's fairly easy to consent to euthanization. So these people could consent to participation in the study followed by immediate euthanization if the experiment fails and something worse than further decay awaits, no?
Someone with advanced stage Alzheimer’s, enough to warrant early testing with new experimental treatments, cannot consent to anything
If the disease is severe enough to justify an untested treatment with unknown toxicity they aren't aware enough to grant consent.
True.
But they could give consent in advance.
If this horrific disease progresses to the point where ... I give my consent for ... Subject to final approval from family member/doctor/whatever.
> But they could give consent in advance.
There is plenty of data that shows that people are bad judges of their future opinions. “If X happened to me, I wouldn’t want to live anymore” often turns out to not be true.
That makes it questionably whether consent years or even months ago implies consent now.
And yes, that is very problematic in cases such as Alzheimer’s where people cannot consent now.
Isn't that what power of attorney already is?
Power of attorney isn't unlimited
These are untested treatments with unknown impacts. Consider playing Russian roulette with the patient. The risk isn't the same but the outcomes have the same range. From nothing to death.
Most dementia patients have good days and bad. If they consent one day, then don’t the next, what do you do?
>they aren't aware enough to grant consent
That's not really an obstacle, people in those situations have family members consent for all sorts of treatment already.
Because instead of curing their Alzheimer it might cause them to die faster with big side-effects if it's not tested well first.
Eventually they will be allowed and there will be a human trial. Not when they're still experimenting.
Just because someone has Alzheimer doesn't mean they're automatically a lab test subject.
This test shows effectiveness, they also need to go through trials to test for safety and unintended side effects
That’s actually the reverse order (and this trial didn’t test efficacy in humans).
> That’s actually the reverse order
I'd say that depends on how effective something is. If a treatment makes significant changes to most of the patients, you can have sufficient effectiveness proof before you're halfway done with the phase 1 safety trial.
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>1. This is great news… for mice with Alzheimer’s that don’t mind treatments every 6 months.
Would you rather test it directly on humans?
Do you think they did it not caring whether it's also eventually applicable to humans all?
Do you think if the treatment reaches humans and is effective, and Alzheimer’s patient would "mind treatments every 6 months"?
It’s pretty clear that the commenter you’re responding to is making the point that a treatment effective in mice still has a long way to go before it’s viable for use on humans, assuming it is ever viable to use on humans.
Mice and humans are quite different, and whilst it looks like this treatment actually reverses the effects of dementia in mice, it’s far from clear that it would have the same impact on humans. By the time people start exhibiting Alzheimer’s symptoms, the brain will already have sustained quite a lot of damage - by which I mean death of neurons - so it’s hard to see how this would actually reverse the disease, as opposed to simply slowing or halting its progression, without these neurons being replaced.
Most people start exhibiting Alzheimer's symptoms long before they develop full-blown Alzheimer's. Starting treatment when a person has only taken a small amount of damage, reversing what would go on to cause further damage, could be a really big deal.
Aren't you a ray of sunshine...
So far all the prior Amyloid clearing drugs did not cause recovery in people despite doing so in mice. Its meant a lot of researchers now aren't convinced that the Beta Amyloid is the problem in Alzheimer's. I hope this one ends up differently, its definitely a lot faster and more effective than the others at clearing.
See https://www.astralcodexten.com/p/in-defense-of-the-amyloid-h... for an IMO compelling argument that amyloid really is the underlying cause. The theory is that amyloid buildup causes misfolded tau proteins which cause the cognitive damage. So reducing amyloid in people already suffering from Alzheimer's doesn't do much because they already have excessive tau; at best it might slow down the progression.
I've read this article before, and it makes me think OP article, even if working on humans, would still not alleviate Alzheimer.
If successfull it could slow progression, and with better detection eventually greatly reduce the impact. Of course the whole thing could not happen, but i don't think we can say it will not happen right now.
Well that's depressing. My biggest fear, and this isn't a bad setup for a joke, is early-onset Alzheimers. I don't think I'm especially high-risk for it, but I did have a single great-grandfather who got it so technically it does run in my family. It seems so horrible, having your brain sort of deteriorate and losing all your memories, and being a burden to everyone.
Ideally I never get it, but if I do get I hope it's in like my late 90's, or even better by the time I get it they already have a cure, though the fact this might not work for humans makes me a little sad.
And what?
(Or was that the joke?)
Nope, that wasn't intended to be a joke, I just forgot to finish the sentence. Edited.
there’s some interesting treatment in china that seems promising. something about unclogging drains in the neck. friend told me it looked ‘possible’.
the whole western field is 15-20 years behind because some researcher lied about plaque data and everyone spent all their time chasing the lead. I think you’ll see useful therapies in 15-20 years from the west, maybe sooner if all the some ai hype pans out.
or the Chinese thing turns out to work! can’t tell myself. there’s probably an American who will try it at some point and publish a case study. Very tough to judge Chinese papers..
here’s an overview: https://pmc.ncbi.nlm.nih.gov/articles/PMC12121576/
“Despite this rapid adoption and ‘miraculous effects’ from non-academic sources, no other country has reported clinical applications or clinical trials of LVA for AD treatment so far, raising questions about its mechanism, efficacy and implications.”
China has an actual medical establishment. The fact that the treat this as homeopathy should give one pause.
fine fine. Let me speak to you like you're a colleague and not a hn commenter that you can be upfront with:
As a practicing clinician, I must express significant reservations regarding therapeutic agents emerging from China, particularly those rooted in traditional Chinese medicine (TCM). In the absence of rigorous, peer-reviewed validation through randomized controlled trials (RCTs) conducted under Western regulatory standards, such interventions are frequently met with skepticism within the medical community. The prevailing perception among Western practitioners is that TCM-based therapies often lack robust empirical evidence, bearing a conceptual resemblance to homeopathic modalities, which are similarly contentious due to limited mechanistic clarity and inconsistent clinical outcomes. When considering novel pharmacotherapies developed in China, especially those in early-phase clinical trials or lacking approval from regulatory bodies such as the FDA or EMA, the Western medical establishment tends to approach them with caution. For instance, a colleague proposing a TCM-derived treatment would likely feel compelled to provide substantial reassurances to counter the inherent skepticism surrounding its efficacy and safety profile. This is not to dismiss the potential of such innovations outright, but rather to underscore the critical need for transparent, reproducible data to substantiate claims of therapeutic breakthroughs, particularly when these agents remain confined to regional use without broader dissemination in Western markets.
I used to wonder why drs never comment on this site and I'm starting to understand why
My guess is that removing Beta Amyloid plaques is not a cure. However, it may be a preventative, the trick being to remove plaque before damage turns into Alzheimer's.
Even if it is later proved that Amyloids are NOT at fault, doesn’t the ability to remove them effectively improve our ability to make that very determination? My impression of this is at the very worst it isolates that variable and pushes the overall understanding forward significantly.
Per sibling comments, if this ceases or slows the progression of damage, that holds value. It's hard to measure quality of memory in mice so we don't even know what this found "recovery" means. But it still has immense value as a preventative.
I was wondering and found the drug Leqembi, started trials in 2007 and basically didn't finish trials until 2022, approved in 2023.
man that's a lifetime for this drug's trials.
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I wonder if this could be used in cases of central amyloid angiopathy. I had a family member whose blood vessels in the brain essentially turned into fragile glass from this (and ultimately hemorrhaged).
There's lots of very elderly Alzheimers patients in hospice care... might be an easier clinical trial to get approved than some alternatives.
Consenting Alzheimer's patients is ethically tricky even at early stages of the disease. Just as it is for anyone staring down the barrel at a particularly nasty degenerative disease.
I'm with you though. I know I'd want it more than the Alzheimer's.
I wonder if it's possible to 'pre-consent' before onset, and if that would be considered consent?
Discussion: https://news.ycombinator.com/item?id=45528308
Creatine seems to make some marginal difference if taken in sufficient dosages, anecdotally. More research is underway.
There is also this study (https://doi.org/10.1002/trc2.70101), showing some benefit regarding cognition in alzheimers patients. AFAIK it's the first human trial in this context though, so it is still very preliminary.
Can’t wait for how this will take decades just to decide if they’ll try this on humans.
Here is the big question: How profitable would this be for big pharma if it really worked? If the answer isn't an enormous number, this isn't going anywhere beyond the researchers who published their work.
If the cost to the UK is reported to be 42 billion per year [0] (need to do more verification on this) and I quickly couldn’t see a figure for the US, then I believe there is an argument for a nationalisation policy where the government writes a very large cheque to the company and then makes the treatment free to everyone.
A bit socialisation of health care for some but the benefits to the economy may well be worth the trade alone, never mind the individual benefits
[0] https://www.alzheimers.org.uk/blog/how-much-does-dementia-ca...
To play the devils advocate, does that take into the "cost" to the government if pensioners are living longer because Alzheimers was cured? I could easily see this turning into a debate behind politicians closed doors of
"If "x" % of the population has their life is extended an average of "y" years, how much more does that cost in pension payouts over the life of the individual vs the medical savings from curing Alzheimers?"
The problem is, you're not just writing a large cheque in return for a working treatment. You're writing a large cheque to roll the dice on some research that might (and probably won't, statistically) result in a working treatment. So you need a very large cheque so that you can fund multiple research projects in the hopes that one of them will give you a treatment. Even then, there's the possibility that none of them will work and you've got nothing to show for any of the money spent.