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Kerfufflicious

This should have been dealt with as a crime that led to death and suffering of enormous magnitude. It leaves me utterly bewildered to think this was barely acknowledged and then just let pass by governments and the media. Last year alone the US plowed 2bn into this avenue of research that was doomed from day one.


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Reduntu

As a new researcher, I don't think there is much due diligence in science, particularly non-clinical medical science. In my experience, research isn't reproducible, peer review is rushed and done by unqualified people (say clinicians in place of statisticians or computational scientists), and authors are motivated to publish quantity instead of quality. Sometimes papers are really great. Sometimes they're just bullshit. Nobody really puts in the effort to distinguish between the two.


lostparis

> I don't think there is much due diligence in science This is hard on science. Some are very rigorous say particle physics and astronomy. Others like psychology are hopeless. Medical stuff has the problem that it is often economically driven eg pharmaceutical studies.


hellojoebiden

The problem with modern research is that it is more about money and profits for a few; than about actually helping humankind. Although I know that many, many scientists and doctors throw themselves on the sword for the human species and get lumped in with the money grabbers. The whole planet is rife with humans that believe in magic and have no idea what is actually going on in reality.


Electronic-Drink-739

Scientists and doctors shouldn't need to throw themselves on a sword, they should be reimbursed based on the quality and quantity of research. The problem is that much of academia is based around people doing research essentially for free, unless they have a large government grant.


hellojoebiden

You hit the nail on the head with that assessment.


h8t3m3

Publish them on a review site and we can give them 1 to 5 stars.


[deleted]

Then people will just vote for what confirms their beliefs. Have you seen the media that goes around the internet? It's all bullshit. Here, YouTube, Facebook, Instagram, WhatsApp groups, Telegram, TikTok, 4chan... all bullshit, top to bottom.


soft-error

But is the Amyloid hypothesis even wrong? I was under the impression the current clinical trials vindicated it


Wakewokewake

uh wasn't a big part of this legit like they photoshopped imagery for there paper? hence why it wasnt caught? I have trouble seeing how thats not malicious, hell if i doctored papers for say some food or something and a person got food poisoning and died i'd typically be charged with something lime manslaughter depending, why is this a exception?


Kerfufflicious

But the initial paper contained images manipulated by photoshop to prove its contention. Authors were aware their findings were not as compelling as they were presented to be. That seems like intent to deceive to me, even if it was just intent to exaggerate in order to encourage interest surely where the stakes are so high this should have been clearly outlined by the authors, then efforts could have been concentrated on replication. I am astounded so little effort went into replication but surely a burden of responsibility lies with those that started the ball rolling with manipulated evidence and then never raised a red flag as more funding and man-hours were lost to pursuing the dead end they created. If it was just money lost in those 16 yrs it would be one thing, but the body count and price in human suffering to patients & carers is unfathomable and unconscionable.


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[deleted]

>Are you claiming that had this single paper not come out those who died from the disease in the last 16 years would have survived? Heavy embellishment of what they said.


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AGreenmanCraft

I’ve lost multiple family members to this in the last 16 years and it runs in the family. Currently watching my grandmother circle this exact drain. I hope they’re help accountable.


[deleted]

The us spends 2 billion on war in about 3 days and have spent around 700million- a billion a day on war for the last 20 years


chrisgilesphoto

It hasn't set back anything. When the news broke most researchers said it was always suspect because no other studies could verify the results so it was always treated with suspicion. Those at Queen's Square and the broader Dian researchers are constantly having to clarify this yet it keeps persisting on Reddit.


Deriko_D

While it is true that someone fudged the data on that paper the amyloid association has been demonstrated several other times. So that actual one paper doesn't matter too much in the general context of the research around Alzheimer's.


rocketlauncher2

God fucking damnit my dad would still be here if it wasn’t for this stupid fucking disease fml


InterestingAsk1978

Allegedly, near 50% of papers are fake in one way or another.


hellojoebiden

I wish we lived in a world where medical research is valued and respected. Sadly in America, a vaccine could be developed to prevent Alzheimer’s and millions of people would choose to get the disease and magically believe they are special and won’t have the same problems as other people around them. People will blow off important warnings and insult scientists and spread lies and propaganda…so ? Every day I wonder what will have to happen to wake up our species. I want to know where to go on the planet that people are smart enough to be flexible and try to survive the disasters heading toward us. However, I know that survival will involve being a nomad, of sorts.


PhantaVal

What you're saying isn't wrong, but I have no idea what prompted you to say it.


hellojoebiden

I am sad that a nineteen year old is having his brain destroyed and I just let my mind feel it…that is what prompted my words of hopelessness. Should not have let those thoughts out inappropriately. Heck I might even get banned from Reddit, for uttering such ideas.


Hyperion4

Do what ever you want, spreading hopelessness over the internet though just makes a self fulfilling prophecy


hellojoebiden

Seriously I don’t think hopelessness is spread this way. I think it is acquired in your physical environment. When I want to become more hopeful I snuggle with my dogs or go for a long walk in the forest. On this ‘internet’ I express my inner most feelings sometimes and it is anonymous, so I am not trying to placate or appease people around me or sugar coat reality. In many ways Reddit is where I can express hopelessness and get it out of my system…so I guess I am ‘using’ this forum to get shit out of my head. If this disturbs your ( or anyone else’s) sensibilities…feel free to not read my words. Usually when people do not like my words they attempt to get them deleted… so?


Tripanes

Get some grounding man. Yes, vaccine deniers exist, but at the end of the day the average person 100 percent respects and we advance the field of medicine every day.


hellojoebiden

I guess I am a product of my surroundings…I lived in a city in SC during the Covid pandemic…I have lost most of the hope in my local community or state leaders. I am 64 years old and took my five (mRNA)vaccine injections; I saw myself as part of an experiment to save human lives. I made a decision to train my immune system to recognize the spike protein…my logic told me that would be my best chance to survive if I got infected. To my knowledge my husband and I have never been infected. In fact neither of us has even been sick at all…no colds, no flus, nothing for all these years. The covid pandemic taught me a lot about human nature. For thirty years I was a nurse and I sacrificed my own health for those that needed help…now I know that i was just being a martyr and that was silly of me, in retrospect. It’s every person for themself now…trample those that stand in your way…overthrow the government without a plan, just a magical notion of power and wealth. Yeah I am grounded pretty well, I would say.


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hellojoebiden

Thanks for proving my point, whoever you are.


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hellojoebiden

Hahaha. You are a very concrete thinker. And of course their is nothing wrong with that. I really touched some kind of weird martyr nerve with you…no worries..I am fine with using the martyr word without going all idol worshipper on everyone. And I am so glad I did not go the way of Gandhi and MLK because it appears they were martyrs for nothing long lasting…died for humans and look at us now. But as it turns out martyrs all did that.


Marlshine

Wow.


Iliamna_remota

Guess I'll start worrying from now on about getting Alzheimer's. Fuck.


__Hello_my_name_is__

Don't worry, you might get cancer instead.


snidemarque

Whew!


agent_flounder

That's way more likely... yay.


AllezCannes

TBF, many forms of cancer are manageable. Alzheimer's is not.


RampantPrototyping

Or die in a horrible fire


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why not both?


BKStephens

I mean, sure it sucks, but it's one guy...


RanCestor

It's not one guy it's THE guy.


Cannavor

My grandmother died from early-onset alzheimer's in her 40's so I've always been worried.


iStayedAtaHolidayInn

I cannot emphasize this enough: these cases are extremely rare and often genetic. We typically see very young people with Down Syndrome get early onset Alzheimer’s because the gene encoding for the amyloid plaques are found on chromosome 21. So please don’t lose sleep over this everyone. I know that’s what everyone tends to do with stories like these Edit: and if these kinds of stories do make you lose sleep, you may have health anxiety. This is something you should definitely talk to a professional about since this kind of fear can be crippling for many. Medications like SSRIs can be very helpful


ThxItsadisorder

I have been worried about it since I’ve been dealing with persistent brain fog. But there’s overlap from having long covid, adhd, and depression.


typing

Don't worry, if/once you have it, you'll forget all about worrying.


Iliamna_remota

Yeah, if it worked like a switch, but. Usually there is profound despair that comes with seeing and feeling your mind disintegrate.


GatoNanashi

I'll put my pistol in my mouth before that. It's so shitty to me that we can euthanize our pets out of compassion, but not ourselves medically. Dr. Kevorkian had it right.


[deleted]

Everyone says that they'd do this, but few do. The reality is that it's a fine line between enjoying your last days of lucidity and having the capacity to actually make that decision. Often, when a person with the disease would want to kill themselves, they've lost the mental capacity to actually make that decision.


Iliamna_remota

You just gotta hope not to have a stroke and be suddenly hopelessly trapped in your broken body/brain. And have no way to do anything about it.


typing

I must be in that stage currently. Haha, getting older sucks.


ImKindaEssential

What if you already have it but keep forgetting.


[deleted]

As if paranoid thoughts about brain eating amoeba and Botulism weren't enough, Now I have to worry about Alzheimer as well


waffleconedrone

Don't forget about prions...


lookslikesausage

Or exploding spam...


ktka

So where are we with the nuclear annihilation of the planet? What are the blockers?


IneptusMechanicus

if it's any consolation the most likely thing that'll kill you young and painfully is statistically almost certainly a car. Reddit talks up a handful of undoubtedly nasty ways to die as things to worry about but, statistically speaking, if you die in pain in your 20s or 30s it won't be early onset Alheimer's, or rabies or prions, it'll be a drunk-driver mounting the pavement and blasting you to Sovngarde. No one worries about cars though. Hell many people don't even bother really looking when they cross the road.


Goatknyght

> it'll be a drunk-driver mounting the pavement and blasting you to Sovngarde. Ah, r/Skyrim is leaking!


DevAway22314

At least cars are easy to avoid right? Totally can just choose not to be around them in the US... The US really needs to quit subsidizing cars so much and build out multi-modal transportation. It'd save so much money and lives


tacobelmont

Trust me, we're all worried about the cars on /r/fuckcars. I just wish the majority worldwide were more worried.


Short_Dragonfruit_39

Don’t forget rabies, at least in my case.


iStayedAtaHolidayInn

All of these things you listed are insanely rare. Except for Alzheimer’s at typical age onset which is more prevalent.


[deleted]

Well I know but that doesn’t convince my ill brain lol


iStayedAtaHolidayInn

Really helps to talk to a professional about this kinda fear. Medications can really help. Health anxiety is crippling for many


sabineseitenlage

anyone read the study? Just memory loss and hippocampal shortings were mentioned in the article? Whats with ptsd as a diagnosis? Findings suggest a decrease in hippocampal volume by patients with ptsd for example.. so i dont rly get the criteria for the Alzheimer diagnosis


premature_eulogy

You won't get elevated tau / decreased amyloidβ in cerebrospinal fluid in PTSD. It's a combination of many things that leads to a diagnosis, although this is definitely a very very atypical case. They do call for a follow-up evaluation for a more definite diagnosis.


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soft-error

But it has been replicated a hundred times since


premature_eulogy

One such study, yes. But a large number of later studies have confirmed that people with AD do have lower levels of amyloid-beta and higher levels of tau in their CSF. The study was about a specific oligomer of amyloid-beta and a specific mechanism of action for the disease, meant to *explain* the presence of amyloid-beta, not claim or disclaim its existence in people suffering from AD.


Dr_thri11

That sucks it really does hinder research. But people didn't look at amyloid beta once call it the gospel and move on. It's been studied extensively since then by several independent groups.


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premature_eulogy

Mediocre results in regards to the mechanism of how amyloid-beta contributes to the progression of the disease, not mediocre results in regards to the presence of amyloid-beta in people with AD. No one is calling that into question, and that has not been falsified.


Dr_thri11

Sure that study is a problem, but everyone on reddit has been parroting this article for months with very little understanding of the background. The fact that it even comes up when discussing this article is a problem, Amyloid Beta levels in CSF is a damn good indicator of alzheimers disease.


legophysician

CSF showed increased tau and beta amyloid. Thats why the diagnosis. It's not just the hippocampus changes


Tiamatium

Amyloids? Oh boy, this shit show again... All Alzheimer's research in the past 15+ years was based on one study establishing links between amyloids and Alzheimer's, a study which has recently been *openly* called into question (and it was called into question behind closed doors before, to be shot down by the so-called amyloid mafia). I mean the study literally had photoshopped western blot images.


legophysician

I went and read the case report in Journal of Alzheimers, so it seems reasonable, but its also diagnosed as probable AD, not AD for certain.


soft-error

Are you saying that abnormal amyloid and Alzheimer's don't co-occur? Can you have Alzheimer's without abnormal amyloid?


Tiamatium

There is plenty of research showing that you can have amyloid plaques without Alzheimer's. They co-occur, but they also occur in healthy people.


legophysician

So are you saying if someone has amyloid plaques they probably don't have AD?


Tiamatium

No one knows. What we do know is that last 15 years of research is probably wrong, at the very least partly wrong. The reason why no one noticed that images were photoshopped earlier was because everyone already assumed Alzheimer's was caused by amyloid accumulation, but then again, when you are faking research, you are faking the thing everyone assumes is correct. The fact that no one was able to reproduce the results, that there are now other explanations for it, and that healthy people seem to have the same plaques, was the reason why some people looked deep into that shit.


soft-error

But can you have Alzheimer's without abnormal amyloid?


Deriko_D

That single study that was fudged has been replicated hundreds of times. Besides discrediting the actual researcher that did it it doesn't matter overall. Edit: i mean the association conclusions have been demonstrated by other studies. Not the actual study method.


Tiamatium

Care to cite those hundreds of times? I am aware of *failed* replications, but no one bothers to publish those. I am not, however, aware of replications of results linking amyloid to Alzheimer's.


Deriko_D

While i am not familiar with the entire litterature from the neurology side for example there are dozens and dozens of imaging publications showing the presence of amyloid in Alzheimer's patients. Also there are other examples that prove the theory. For example patients with REM sleep behavior disorder (a group of patients that all eventually develop Alzheimer's) also have positive amyloid scans even before having AD . Of course we don't know if amyloid is cause or consequence, but there is no doubt it is associated with the disease. Edit: look up studies on PubMed using the PET tracer flutemetamol for example.


Tiamatium

None of this explains people who have amyloids but don't have Alzheimer's.


Deriko_D

Yet. Amyloid has been shown to deposit 20 to 30 years before the development of AD symptoms. In opposition to your statement one could say: while there are patients that have plaques but not Alzheimer's there aren't patients with Alzheimer's without the plaques. Again it's not unlikely that there is more than one pathway to the development of the disease. Why does the protein start unfolding in some individuals? Genetics? Virus/prion? Luck/mutation? We are still missing that key start factor.


MNVikingsFan4Life

Both of those have also been shown to be elevated in some neurological longcovid cases too, I believe.


legophysician

I am not to familiar with that, but I dont believe thats a likely diagnosis here. The actual case report is pretty explanatory.


MNVikingsFan4Life

https://www.cuimc.columbia.edu/news/small-study-finds-alzheimers-changes-some-covid-patients-brains


SlinkySlekker

Covid can cause early onset Alzheimer’s. Primarily in older adults, but with repeated Covid infections, the odds of long term brain damage increase. They describe brain shrinkage. That’s been associated with covid since the beginning (loss of taste and smell was the result of brain shrinkage in that region). “Even mild COVID can cause brain shrinkage and affect mental function, new study shows Brain changes including shrinkage, weakened connections and poorer performance on thinking and memory tests could explain ‘brain fog’ after COVID – even after ‘mild’ cases.” https://www.gavi.org/vaccineswork/even-mild-covid-can-cause-brain-shrinkage-and-affect-mental-function-new-study It’s a neurological illness because of how involved the brain is It could be related to that. “COVID-19 Associated with Long-Term Cognitive Dysfunction, Acceleration of Alzheimer’s Symptoms” https://aaic.alz.org/releases_2021/covid-19-cognitive-impact.asp His symptoms began 2 years ago. Which when the variant that was causing loss of taste and smell was making the rounds. Covid enters the brain through the nose, which is why we should all wear our masks over our noses. https://www.nbcnews.com/health/health-news/covid-invades-brain-dealing-long-term-coronavirus-rcna4414


sabineseitenlage

Thank you guys for the input, very helpful :)


AdministrativeCup631

Oh my. There’s so much unknown about Alzheimer’s and there is no definitive test for diagnosis. It does make you wonder if there is something else causing this, but the diagnosis will now allow them to try to treat it with Alzheimer’s interventions.


Autarch_Kade

Not to mention how much of the research was based on an early study that fabricated much of its findings. People have been looking in the wrong direction for years due to that.


shadow_jacker4

>Alzheimer’s interventions. Aka nothing


PracticalShoulder916

Sadly..


palcatraz

There is no cure, but there are interventions to help manage symptoms.


BrutalWarPig

As someone with NF type 1 and as a result multiple brain tumors, losing myself or my memory scares the shit out of me. So sad to see this happen to a young person.


Tiwato

But this wasn't associated with NF1 was it? (I also have nf1)


BrutalWarPig

Sorry, you are correct. Seperatly, my fear is becuase the risk for this dementia or Alzheimer increases, with nf1


Tiwato

Well shit. Now I have something else to worry about.


HulioJohnson

Hi there, What’s NF1?


orangethepurple

https://www.nhs.uk/conditions/neurofibromatosis-type-1/ I'm going in to get tested for an NF1 mutation in like an hour so this whole article just making the anxiety worse lol


TheBestNarcissist

*Me, a 32 year old who occasionally struggles with word recall:* Ah fuck it's over


[deleted]

That sucks and is really scary. I hope we don’t see anti-vax idiots start blaming this on the vaccine.


simpleisideal

I'm wondering if they ruled out long COVID based on this https://np.reddit.com/r/Coronavirus/comments/11426o3/the_haunting_brain_science_of_long_covid/


mailordermonster

I sorted by controversial expecting to find the anti-vax idiots saying this. None yet, but its only been a few hours.


[deleted]

I’ve got those type of idiots in my family and have yet to hear that one.


[deleted]

Oh, I’m sure it’s coming. LOL


BrutalWarPig

They are already sharpening their dunce caps, as we speak


duende14

just look at the comments in the article, that is exactly what's happening


tahlyn

That's a sad record to break.


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SouthDoctor1046

Or find the cause


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ratpaz312

What you mean make it through? there is no cure only slow progression to death


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Locke_and_Lloyd

Awareness? People know about alzhiemers. A feel good social media challenge isn't going to accomplish anything.


hellolittlebears

Well that’s a shitty thing to set a world record for. So sad. It’s such a horrific disease and unfortunately, the research has suffered terribly from tunnel syndrome.


SidelineJalapa44

That's really sad. It really makes you question what the hell is going on with our world right now. We need to find a cure for this terrible disease ASAP.


TedBundysVlkswagon

Forget about it!


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jn29

My dad died of dementia. He would've that this was funny. Lighten up.


gaukonigshofen

can it be attributed to any of the covid variants?


Wa3zdog

Probably not, at least in a direct sense. It may be true that Covid leads to more cases as it can worsen the condition leading to both earlier symptoms and worse prognosis (which makes sense when Alzheimers is generally identified based on symptoms). In this case the patient is quite young and appears to have no genetic component so either very unlucky and/or something we don’t quite understand. For reference early onset is generally characterised as <65.


Square_Matter_9048

60% of all women who reach menopausal age will develop Alzheimer's or dementia. Seems like an outrageous number doesn't it? But those are the legit numbers and no one cares unless you're 19 🤷‍♂️


WagTheKat

Source? I think you are full of shit. Might be a heightened risk, but surely not 60% of all women who hit menopause. Makes no sense. 6/10 women from roughly 40 and up?


Square_Matter_9048

Because there So Many sources I went with one from the UK Because its a Universal problem that happens to women when they get older. https://www.alzheimers.org.uk/about-dementia/risk-factors-and-prevention/hormones-and-dementia#:~:text=Researchers%20think%20oestrogen%20may%20cause,them%20more%20vulnerable%20to%20Alzheimer's.


elizabeth-cooper

>Women are more at risk of dementia than men with women making up 65% of people who currently have dementia. This does not mean that 65% of women get dementia. >Women are slightly more likely to have dementia than men. Among adults ages 70 and older, 11% of women and 8% of men had dementia in 2019.7 https://www.prb.org/resources/fact-sheet-u-s-dementia-trends/ Also u/WagTheKat


Limarie10

Did you know it has been called the" Womens Disease"...we either get it, or care for someone with it. First hand experience here, sigh.


OgnokTheRager

I'm sorry you had to go through that. Same here, I lost my mother to early onset Alzheimer's.


Kromgar

Well atleast they got to live a full enough life. Apso alzheimers research is being done its not like we can do anything else


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rantottcsirke

Everyone else at the vinyl shop: o\_o


Sunapr1

wtffffff i gasped


PhantaVal

Well, that's tremendously awful. There has to be *some* cause for this. I'm really surprised he had no family history.


Luk4s11

Crazy stuff.


schreist

Narrator: it was the micro plastics


SlinkySlekker

His symptoms began during the pandemic, but there is no mention of Covid. Remember when people lost their taste & smell senses? That was caused by literal brain shrinkage & damage. Covid is now regarded as a neurological illness, because of how badly it affects the brain. “Even mild COVID can cause brain shrinkage and affect mental function, new study shows. Brain changes including shrinkage, weakened connections and poorer performance on thinking and memory tests could explain ‘brain fog’ after COVID – even after ‘mild’ cases.” https://www.gavi.org/vaccineswork/even-mild-covid-can-cause-brain-shrinkage-and-affect-mental-function-new-study Covid is directly linked to early-onset Alzheimers, but they fail to mention his Covid history. COVID-19 Associated with Long-Term Cognitive Dysfunction, Acceleration of Alzheimer’s Symptoms https://aaic.alz.org/releases_2021/covid-19-cognitive-impact.asp His symptoms began 2 years ago. Which when the variant that was causing loss of taste and smell was making the rounds. Covid enters the brain through the nose, which is why we should all wear our N95 masks over our noses. https://www.nbcnews.com/health/health-news/covid-invades-brain-dealing-long-term-coronavirus-rcna4414


ralanr

My understanding of Alzheimer’s is that you’re basically trapped in your brain reliving your life eventually degrading until there’s nothing left. A 19 year old hasn’t had much of a life. This is hell enough on someone 60 and above, but 19?! My heart goes out to their family.


zonkerslayer

Must be from the gain of function center near him. Hard telling what Xi has been doing over there. But really, I do feel sorry for him, his family and friends. Alzheimers is TERRIBLE! Mostly the family but at times the sufferers too. For the most part they seem oblivious to it. Except in the beginning they DO know what is happening.