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.
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/
China has an actual medical establishment. The fact that the treat this as homeopathy should give one pause.
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
(Or was that the joke?)
man that's a lifetime for this drug's trials.
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...
"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?"
I'm with you though. I know I'd want it more than the Alzheimer's.
But you can allow a proxy to make the decision for you via a lasting power of attorney.
jader201•3mo ago
> 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
nharada•3mo ago
copperx•3mo ago
I wouldn't mind 10x a day injections if it keeps Alzheimer's at bay. Actually, I wouldn't mind a continuous IV drip.
bitmasher9•3mo ago
vasco•3mo ago
dmurray•3mo ago
derektank•3mo ago
vasco•3mo ago
Grazester•3mo ago
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.
londons_explore•3mo ago
coldtea•3mo ago
cma•3mo ago
JackMorgan•3mo ago
I guess though a backpack version probably could be more like an always attached glucose device with just a tiny line.
jimmydddd•3mo ago
hamburglar•3mo ago
Oh, also, if you do peritoneal dialysis, it’s daily, whereas hemo dialysis is generally two or three times a week.
devilbunny•3mo ago
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.
wishfish•3mo ago
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.
trhway•3mo ago
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."
lm28469•3mo ago
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
coldtea•3mo ago
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.
foldr•3mo ago
jbstack•3mo ago
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.
coldtea•3mo ago
Not "apples vs oranges". More like "diabetes vs healthy diet".
Most wouldn't need treatment if they worked at prevention.
scotty79•3mo ago
If not, why not?
trhway•3mo ago
140 minutes/week is really really far from vigorous.
mathgeek•3mo ago
kadoban•3mo ago
Zababa•3mo ago
vintermann•3mo ago
So while there are lots of excellent reasons to stay active into old age, it's not a replacement for treatment.
jader201•3mo ago
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)
don_neufeld•3mo ago
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?
jader201•3mo ago
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.
lm28469•3mo ago
scotty79•3mo ago
bartread•3mo ago
xattt•3mo ago
whycome•3mo ago
jpollock•3mo ago
harry8•3mo ago
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.
arijun•3mo ago
jpollock•3mo ago
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.
Someone•3mo ago
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.
lostlogin•3mo ago
Suppafly•3mo ago
That's not really an obstacle, people in those situations have family members consent for all sorts of treatment already.
wahnfrieden•3mo ago
trallnag•3mo ago
wahnfrieden•3mo ago
qwertytyyuu•3mo ago
adastra22•3mo ago
Dylan16807•3mo ago
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.
jryb•3mo ago
adastra22•3mo ago
b112•3mo ago
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.
adastra22•3mo ago
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.
coldtea•3mo ago
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.
samus•3mo ago
intended•3mo ago
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.
0xEF•3mo ago
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.
dpark•3mo ago
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.
samus•3mo ago
dpark•3mo ago
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.
adastra22•3mo ago
Something is wrong with your definition of consent if it totally dismisses the patient’s autonomy and right to action.
dpark•3mo ago
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.
adastra22•3mo ago
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.
dpark•3mo ago
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.”
adastra22•3mo ago
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.
dpark•3mo ago
Regardless, this is really a separate question from whether you should be able to legally permit others to be criminally negligent towards you.
adastra22•3mo ago
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).
intended•3mo ago
If you read that statement anywhere other than this thread, it would be part of a cautionary tale.
adastra22•3mo ago
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.
intended•3mo ago
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.
coldtea•3mo ago
This is not available to you yet. Their drug, their choice.
more_corn•3mo ago
There’s also a FDA provision for treatment of last resort. If you’ve got a terminal condition with no approved treatment and there’s a possible treatment of unknown safety and effectiveness you can apply and get that treatment.
If you or a loved one has Alzheimer’s I highly encourage you to request this treatment. You’ll be risking unknown side effects and or death, but it will generate data for those who come after and could advance the treatment of this terrible disease by a decade.
coldtea•3mo ago
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.
busyant•3mo ago
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)
b112•3mo ago
dmurray•3mo ago
tinco•3mo ago
amenhotep•3mo ago
IAmBroom•3mo ago
As always, there's no guarantee that it will work IRL on Homo sapiens.
_factor•3mo ago
coldtea•3mo ago
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"?
bartread•3mo ago
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.
AnimalMuppet•3mo ago
hard_times•3mo ago
rickydroll•3mo ago
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.
pschuegr•3mo ago
yencabulator•3mo ago
https://raio.org/FlowersForAlgernon.pdf
https://en.wikipedia.org/wiki/Flowers_for_Algernon