20 ms·

This article is 100% true. My first job out of college 10 years ago was in a lab focused on Alzheimer’s research. Our Principle Investigator made an art of wri

This article is 100% true. My first job out of college 10 years ago was in a lab focused on Alzheimer’s research. Our Principle Investigator made an art of writing grant applications for studies that would appear to be in line with mainstream theory, but were really intended to test theories he actually thought were worth testing, presented in results as an “interesting” aside. He believed the amyloid theory had been conclusively disproven. He explained to me that people like him work for decades, quasi-retire into positions accepting grant applications, and have a conscious or unconscious agenda to preserve or validate their life’s work. His money quote was “science is like the Catholic Church, a lot of nice sentiments but full of people”. I don’t have any evidence or examples, but I suspect this dynamic is not limited to Alzheimer’s research. Another anchor to research not mentioned in the article is how much sponsoring universities take from research labs. To put a university endorsement on our research, which is needed to be credible, the university took half (half!) our grant money.

wavepruner 7y ago
"I suspect this dynamic is not limited to Alzheimer’s research." Agreed, I think it is a universal problem in science. I have an illness that has been curable for decades now, but this cure is treated with hostility by the medical establishment. I look forward to the day when the cabal of my illness collapses. Hopefully then I will be able to talk about what happened without people getting angry.
- keeganpoppen 7y ago
  looks like that day isn't today, given the downvotes xD in fairness, i think people have a hard time taking claims like this seriously without a little more information, due to its superficial similarity to those of a "crackpot". (but while the _precision_ is pretty poor on the correctness of "crackpot" theories, the _recall_ is pretty much 100%) arguably > 100%, to be a bit tongue-in-cheek
  - roenxi 7y ago
    Even more information wouldn't really help. 'Crackpot' is something of a shorthand for an idea that disagrees with consensus research position. The only tool an average person has to determine an idea as truth or fiction is whether it lines up with the current professed norms; so for a technical forum like HN ideas that disagree with the standard research position can only be ignored due to lack of evidence.
    - wtallis 7y ago
      > The only tool an average person has to determine an idea as truth or fiction is whether it lines up with the current professed norms; so for a technical forum like HN ideas that disagree with the standard research position can only be ignored due to lack of evidence. The manner in which someone presents their ideas is a decent secondary indicator. Common red flags include being evasive about what disease they're referring to, being unable to demonstrate where the mainstream theory fails, being unable to point to any good experimental evidence that even hints that the crackpot theory may be an equal or better explanation, not being able to anticipate and have a good answer for the most obvious questions raised by the crackpot theory.
      - wavepruner 7y ago
        Thank you for the feedback regarding how I come across. Next time I will try to include more specific detail in the OP that hopefully does not upset people. I've found that a vague introduction protects me from down-votes, but perhaps there is a way to talk about some details without that happening. The illness is chronic mercury toxicity and the treatment is chelation therapy. I know a man who reversed his dementia with chelation therapy. He's an older guy that would get lost in his own neighborhood. Steven Fowkes, a chemist, has done a lot of work in presenting the some of the latest research regarding Alzheimer's and how it relates to mercury toxicity. A good start is his Quora answer here: https://www.quora.com/Why-havent-we-made-progress-in-a-cure-for-Alzheimers-disease https://www.quora.com/Why-havent-we-made-progress-in-a-cure-... Some other good scientific literature is the work of Boyd Hayley with the chelator emeramide. He's in the process of getting it approved through the FDA for treatment of acute mercury toxicity. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3346673/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3346673/ https://www.ncbi.nlm.nih.gov/pubmed/29444690?dopt=Abstract https://www.ncbi.nlm.nih.gov/pubmed/29444690?dopt=Abstract
- internet_user 7y ago
  Lyme? You were able to clear long-term post-lyme with i.v. abx? I am interested to hear what you have to say.
  - wavepruner 7y ago
    Lyme may be a complicating factor, but I do not believe it is the root cause. I won't go into details because it will just invite more down votes. You can look at my older posts if you really want to know more. I talked about it a bit when I first created this account.
    - a1369209993 7y ago
      > I won't go into details because it will just invite more down votes. I'd just like to clairify that I downvoted because of the lack of details, not their presence.
  - Aqueous 7y ago
    i was able to clear it with long term abx but they were not iv - iv exacerbates matters for me (still not sure how). the cocktail that worked for me was long term Biaxin (claritbromycin) accompanied by Plaquenil (hydroxychloroquine). i have gotten better from severe neurocognitive Lyme (encephalopathy) from this cocktail twice now, and the one time i went off of it i relapsed within 1 - 2 months. i can’t explai. why it works, but i am fairly good evidence that it does. sadly there is still a lot of hostility to even this treatment due to hesitation around long-term antibiotics, and recovery takes months - making it difficult to observe. and i think only a few doctors are aware of it as an option.
- OGWhales 7y ago
  Care to share further? You have sparked my curiosity.
  - umvi 7y ago
    It's probably one of those illnesses like cluster headaches that can be treated with a currently-illegal drug like psychedelic mushrooms.
    - wayoutthere 7y ago
      Ketamine works wonders for them too. Clinical trials are happening for mushrooms as well.
      - OGWhales 7y ago
        Ketamine is already used medically, correct? I'd imagine that would be easier to push/study because of that. Still super glad to see psychs being studied. It always frustrated me that due to scheduling in the US it was much harder to study them.
        wayoutthere 7y ago
        Yeah, ketamine is used as a sedative and painkiller in people who don't tolerate opioids. It's used off-label in low doses for treatment of depression and chronic migraines -- though is almost always administered by a doctor in a structured theraputic regimen. The success of an approved drug like ketamine in treating depression and chronic migraines has opened the doors for studying other hallucinogens.
  - wavepruner 7y ago
    Going into details will just invite more down votes. You can look through my older posts if you really want to know. I talked about it a bit when I first created this account.
    - 7y ago
- patmcc 7y ago
  How does the medical establishment benefit from not curing your illness?
  - grzm 7y ago
    By being able to charge for ongoing treatment.
  - wavepruner 7y ago
    I don't think they benefit. It's just a complicated issue and change takes time.
  - internet_user 7y ago
    The benefit is in punting off complicated case quicker, because the insurance pay out is the same, regardless if you spend 30 seconds or 30 minutes on the patient. There is often nothing you can do to help anyway, but you can certainly bill 250 bucks every 5 minutes, and many, many do so. In fact, some physicians will not even accept complicated cases, especially if they involve chronic pain treated with opiates, thanks to the hysteria around overdoses today. And that is the reason why universal healthcare will fail, and why the NHS has a private tier, and routinely pays for treatments outside of the UK, done in private hospitals.
    - monadgonad 7y ago
      > And that is the reason why universal healthcare will fail, and why the NHS has a private tier, and routinely pays for treatments outside of the UK, done in private hospitals. This does not logically follow from what you said at all. The NHS has not "failed", nor does it have a private tier - it commissions some treatments from private clinics for purely political reasons. These treatments are still completely free to the patient. An NHS hospital isn't receiving insurance payouts, so it has an incentive to treat people quickly and efficiently, with complete cures being preferred over long-term management when possible.
      - internet_user 7y ago
- crimsonalucard 7y ago
  I don't blame it on science. The principles of science are deliberately invented to get around this problem. Blame it on human behavior. It's unfortunate to say that the very tenants science tries to eliminate are actually normal parts of human behavior. Our actions, logic and reasoning are dominated by emotion and an attempt to hold onto power. Status seeking and religious bias are normal parts of human behavior. The irony of it all is that we hate this type of behavior but are seduced by it nonetheless. A good analogy is the Dark side of the force. One thing I've seen people fall for is that they think they're immune to this bias by being aware that it exists. Nothing is further from the truth. We are all victims of bias and we are all not immune because to be biased is to be human.
el_cujo 7y ago
This has been my experience more-or-less as well. Any graduate student that does anything even alzheimer's adjacent at the school I used to work at absolutely had to have a certain two researchers on their dissertation committee and they would 100% not let you progress without throwing a bone to beta-amyloid in your proposal (along with heavily pushing you to pander to some of their personal pet theories). It's a sunken cost fallacy at this point, people have build entire careers on the beta-amyloid stuff and they will NEVER accept an alternative because it would make them irrelevant. These same people hold a lot of power in the field.
- nextos 7y ago
  It's the same with autoimmunity. Some researchers are obsessed with genetics. But it's mostly about self misclassification due to infections and dysbiosis. Luckily, some top journals have started accepting this, but it's still an uphill battle against the establishment: * Type 1 diabetes: https://www.biorxiv.org/content/10.1101/2019.12.18.881433v1 https://www.biorxiv.org/content/10.1101/2019.12.18.881433v1 * Multiple sclerosis: https://stm.sciencemag.org/content/10/462/eaat4301 https://stm.sciencemag.org/content/10/462/eaat4301 * Lupus: https://stm.sciencemag.org/content/10/434/eaan2306 https://stm.sciencemag.org/content/10/434/eaan2306 * Sjogren's: https://www.sciencedirect.com/science/article/abs/pii/S1521661614000412 https://www.sciencedirect.com/science/article/abs/pii/S15216... * Anti-phospholipid: https://www.sciencedirect.com/science/article/abs/pii/S1931312819302483 https://www.sciencedirect.com/science/article/abs/pii/S19313... * Parkinson's: https://onlinelibrary.wiley.com/doi/full/10.1002/mds.27105 https://onlinelibrary.wiley.com/doi/full/10.1002/mds.27105 * Alzheimer's: https://advances.sciencemag.org/content/5/1/eaau3333?intcmp=trendmd-adv https://advances.sciencemag.org/content/5/1/eaau3333?intcmp=... It's like the old joke that science progresses one funeral at a time.
  - darkerside 7y ago
    Are you saying many diseases we believe to be autoimmune may be caused by infections?
    - nextos 7y ago
barmstrong 7y ago
Sorry to hear that this was the case! I wrote about how scientific research is broken earlier this year, and what you're describing is one of the most pernicious. https://medium.com/@barmstrong/ideas-on-how-to-improve-scientific-research-9e2e56474132 https://medium.com/@barmstrong/ideas-on-how-to-improve-scien... https://www.researchhub.com/about https://www.researchhub.com/about is a project I'm helping get off the ground which hopefully can help this problem, by eventually replacing the traditional journals. Still early days (just beta launched).
- dhimmel 7y ago
  At some level, any system for evaluating research will have to rely on peer assessment. And some amount of groupthink is inevitable with peer assessment. But the ResearchHub model of open collaborative assessment could have provided more incentives and visibility for research that deviated from the beta amyloid hypothesis. It sounds like gatekeepers were a large problem here... i.e. peer reviewers for journals or grants that were insistent on beta amyloid. Disentangling dissemination from assessment (as preprints are doing) will help bring contrary findings to the light. We also need to make all assessment public. Rather than basing the validity of a study on a few anonymous unpublished reviews, let anyone provide feedback and increase the sample size and diversity of assessment. Finally, add some incentives for contrarians who advance unpopular hypotheses that time proves correct. Anyways, lot's of thoughts, but I agree a radical shift in how scientists communicate could help get to the root of the hivemind described in the article and by @cockatiel_day.
rolltiide 7y ago
> and have a conscious or unconscious agenda to preserve or validate their life’s work this is depressing, means I have to second-guess if I have found a cause to spend energy on
refurb 7y ago
“science is like the Catholic Church, a lot of nice sentiments but full of people” That’s a great quote. Pretty much any activity that humans are involved in are at risk for this type of behavior. Egos get involved and objectivity goes out the window.
quotemstr 7y ago
Looks like a perfect example of the dynamics Kuhn brilliantly described in his famous "The Structure of Scientific Revolutions". That's one book that everyone needs to read.

wavepruner 7y ago

"I suspect this dynamic is not limited to Alzheimer’s research." Agreed, I think it is a universal problem in science. I have an illness that has been curable for decades now, but this cure is treated with hostility by the medical establishment. I look forward to the day when the cabal of my illness collapses. Hopefully then I will be able to talk about what happened without people getting angry.

keeganpoppen 7y ago
looks like that day isn't today, given the downvotes xD in fairness, i think people have a hard time taking claims like this seriously without a little more information, due to its superficial similarity to those of a "crackpot". (but while the _precision_ is pretty poor on the correctness of "crackpot" theories, the _recall_ is pretty much 100%) arguably > 100%, to be a bit tongue-in-cheek
- roenxi 7y ago
  Even more information wouldn't really help. 'Crackpot' is something of a shorthand for an idea that disagrees with consensus research position. The only tool an average person has to determine an idea as truth or fiction is whether it lines up with the current professed norms; so for a technical forum like HN ideas that disagree with the standard research position can only be ignored due to lack of evidence.
  - wtallis 7y ago
    > The only tool an average person has to determine an idea as truth or fiction is whether it lines up with the current professed norms; so for a technical forum like HN ideas that disagree with the standard research position can only be ignored due to lack of evidence. The manner in which someone presents their ideas is a decent secondary indicator. Common red flags include being evasive about what disease they're referring to, being unable to demonstrate where the mainstream theory fails, being unable to point to any good experimental evidence that even hints that the crackpot theory may be an equal or better explanation, not being able to anticipate and have a good answer for the most obvious questions raised by the crackpot theory.
    - wavepruner 7y ago
      Thank you for the feedback regarding how I come across. Next time I will try to include more specific detail in the OP that hopefully does not upset people. I've found that a vague introduction protects me from down-votes, but perhaps there is a way to talk about some details without that happening. The illness is chronic mercury toxicity and the treatment is chelation therapy. I know a man who reversed his dementia with chelation therapy. He's an older guy that would get lost in his own neighborhood. Steven Fowkes, a chemist, has done a lot of work in presenting the some of the latest research regarding Alzheimer's and how it relates to mercury toxicity. A good start is his Quora answer here: https://www.quora.com/Why-havent-we-made-progress-in-a-cure-for-Alzheimers-disease https://www.quora.com/Why-havent-we-made-progress-in-a-cure-... Some other good scientific literature is the work of Boyd Hayley with the chelator emeramide. He's in the process of getting it approved through the FDA for treatment of acute mercury toxicity. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3346673/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3346673/ https://www.ncbi.nlm.nih.gov/pubmed/29444690?dopt=Abstract https://www.ncbi.nlm.nih.gov/pubmed/29444690?dopt=Abstract
internet_user 7y ago
Lyme? You were able to clear long-term post-lyme with i.v. abx? I am interested to hear what you have to say.
- wavepruner 7y ago
  Lyme may be a complicating factor, but I do not believe it is the root cause. I won't go into details because it will just invite more down votes. You can look at my older posts if you really want to know more. I talked about it a bit when I first created this account.
  - a1369209993 7y ago
    > I won't go into details because it will just invite more down votes. I'd just like to clairify that I downvoted because of the lack of details, not their presence.
- Aqueous 7y ago
  i was able to clear it with long term abx but they were not iv - iv exacerbates matters for me (still not sure how). the cocktail that worked for me was long term Biaxin (claritbromycin) accompanied by Plaquenil (hydroxychloroquine). i have gotten better from severe neurocognitive Lyme (encephalopathy) from this cocktail twice now, and the one time i went off of it i relapsed within 1 - 2 months. i can’t explai. why it works, but i am fairly good evidence that it does. sadly there is still a lot of hostility to even this treatment due to hesitation around long-term antibiotics, and recovery takes months - making it difficult to observe. and i think only a few doctors are aware of it as an option.
OGWhales 7y ago
Care to share further? You have sparked my curiosity.
- umvi 7y ago
  It's probably one of those illnesses like cluster headaches that can be treated with a currently-illegal drug like psychedelic mushrooms.
  - wayoutthere 7y ago
    Ketamine works wonders for them too. Clinical trials are happening for mushrooms as well.
    - OGWhales 7y ago
      Ketamine is already used medically, correct? I'd imagine that would be easier to push/study because of that. Still super glad to see psychs being studied. It always frustrated me that due to scheduling in the US it was much harder to study them.
      - wayoutthere 7y ago
        Yeah, ketamine is used as a sedative and painkiller in people who don't tolerate opioids. It's used off-label in low doses for treatment of depression and chronic migraines -- though is almost always administered by a doctor in a structured theraputic regimen. The success of an approved drug like ketamine in treating depression and chronic migraines has opened the doors for studying other hallucinogens.
- wavepruner 7y ago
  Going into details will just invite more down votes. You can look through my older posts if you really want to know. I talked about it a bit when I first created this account.
  - 7y ago
patmcc 7y ago
How does the medical establishment benefit from not curing your illness?
- grzm 7y ago
  By being able to charge for ongoing treatment.
- wavepruner 7y ago
  I don't think they benefit. It's just a complicated issue and change takes time.
- internet_user 7y ago
  The benefit is in punting off complicated case quicker, because the insurance pay out is the same, regardless if you spend 30 seconds or 30 minutes on the patient. There is often nothing you can do to help anyway, but you can certainly bill 250 bucks every 5 minutes, and many, many do so. In fact, some physicians will not even accept complicated cases, especially if they involve chronic pain treated with opiates, thanks to the hysteria around overdoses today. And that is the reason why universal healthcare will fail, and why the NHS has a private tier, and routinely pays for treatments outside of the UK, done in private hospitals.
  - monadgonad 7y ago
    > And that is the reason why universal healthcare will fail, and why the NHS has a private tier, and routinely pays for treatments outside of the UK, done in private hospitals. This does not logically follow from what you said at all. The NHS has not "failed", nor does it have a private tier - it commissions some treatments from private clinics for purely political reasons. These treatments are still completely free to the patient. An NHS hospital isn't receiving insurance payouts, so it has an incentive to treat people quickly and efficiently, with complete cures being preferred over long-term management when possible.
    - internet_user 7y ago
crimsonalucard 7y ago
I don't blame it on science. The principles of science are deliberately invented to get around this problem. Blame it on human behavior. It's unfortunate to say that the very tenants science tries to eliminate are actually normal parts of human behavior. Our actions, logic and reasoning are dominated by emotion and an attempt to hold onto power. Status seeking and religious bias are normal parts of human behavior. The irony of it all is that we hate this type of behavior but are seduced by it nonetheless. A good analogy is the Dark side of the force. One thing I've seen people fall for is that they think they're immune to this bias by being aware that it exists. Nothing is further from the truth. We are all victims of bias and we are all not immune because to be biased is to be human.

el_cujo 7y ago

This has been my experience more-or-less as well. Any graduate student that does anything even alzheimer's adjacent at the school I used to work at absolutely had to have a certain two researchers on their dissertation committee and they would 100% not let you progress without throwing a bone to beta-amyloid in your proposal (along with heavily pushing you to pander to some of their personal pet theories). It's a sunken cost fallacy at this point, people have build entire careers on the beta-amyloid stuff and they will NEVER accept an alternative because it would make them irrelevant. These same people hold a lot of power in the field.

nextos 7y ago
It's the same with autoimmunity. Some researchers are obsessed with genetics. But it's mostly about self misclassification due to infections and dysbiosis. Luckily, some top journals have started accepting this, but it's still an uphill battle against the establishment: * Type 1 diabetes: https://www.biorxiv.org/content/10.1101/2019.12.18.881433v1 https://www.biorxiv.org/content/10.1101/2019.12.18.881433v1 * Multiple sclerosis: https://stm.sciencemag.org/content/10/462/eaat4301 https://stm.sciencemag.org/content/10/462/eaat4301 * Lupus: https://stm.sciencemag.org/content/10/434/eaan2306 https://stm.sciencemag.org/content/10/434/eaan2306 * Sjogren's: https://www.sciencedirect.com/science/article/abs/pii/S1521661614000412 https://www.sciencedirect.com/science/article/abs/pii/S15216... * Anti-phospholipid: https://www.sciencedirect.com/science/article/abs/pii/S1931312819302483 https://www.sciencedirect.com/science/article/abs/pii/S19313... * Parkinson's: https://onlinelibrary.wiley.com/doi/full/10.1002/mds.27105 https://onlinelibrary.wiley.com/doi/full/10.1002/mds.27105 * Alzheimer's: https://advances.sciencemag.org/content/5/1/eaau3333?intcmp=trendmd-adv https://advances.sciencemag.org/content/5/1/eaau3333?intcmp=... It's like the old joke that science progresses one funeral at a time.
- darkerside 7y ago
  Are you saying many diseases we believe to be autoimmune may be caused by infections?
  - nextos 7y ago

barmstrong 7y ago

Sorry to hear that this was the case! I wrote about how scientific research is broken earlier this year, and what you're describing is one of the most pernicious. https://medium.com/@barmstrong/ideas-on-how-to-improve-scientific-research-9e2e56474132 https://medium.com/@barmstrong/ideas-on-how-to-improve-scien... https://www.researchhub.com/about https://www.researchhub.com/about is a project I'm helping get off the ground which hopefully can help this problem, by eventually replacing the traditional journals. Still early days (just beta launched).

dhimmel 7y ago
At some level, any system for evaluating research will have to rely on peer assessment. And some amount of groupthink is inevitable with peer assessment. But the ResearchHub model of open collaborative assessment could have provided more incentives and visibility for research that deviated from the beta amyloid hypothesis. It sounds like gatekeepers were a large problem here... i.e. peer reviewers for journals or grants that were insistent on beta amyloid. Disentangling dissemination from assessment (as preprints are doing) will help bring contrary findings to the light. We also need to make all assessment public. Rather than basing the validity of a study on a few anonymous unpublished reviews, let anyone provide feedback and increase the sample size and diversity of assessment. Finally, add some incentives for contrarians who advance unpopular hypotheses that time proves correct. Anyways, lot's of thoughts, but I agree a radical shift in how scientists communicate could help get to the root of the hivemind described in the article and by @cockatiel_day.

rolltiide 7y ago

> and have a conscious or unconscious agenda to preserve or validate their life’s work this is depressing, means I have to second-guess if I have found a cause to spend energy on

refurb 7y ago

“science is like the Catholic Church, a lot of nice sentiments but full of people” That’s a great quote. Pretty much any activity that humans are involved in are at risk for this type of behavior. Egos get involved and objectivity goes out the window.

quotemstr 7y ago

Looks like a perfect example of the dynamics Kuhn brilliantly described in his famous "The Structure of Scientific Revolutions". That's one book that everyone needs to read.