← You Are Not Broken
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- [00:04]
A
Welcome to the youe Are Not Broken podcast. I'm your host, Dr. Kelly Casperson, a board certified urologist, thought leader and conversation starter on midlife living, hormones and sexuality. Enjoy the show.
- [00:18]
B
Hey friends, welcome back to the youe Are Not Broken podcast. I have a very interesting person to talk about today. One of the things I love is like reading books and talking to people. Like that is my dream job. And the fact that I get to do that now on this podcast brings me so much joy. So. So I'm bringing you today Charles Piller, who's an investigative journalist for Science magazine and his work has appeared in the Los Angeles Times, New York Times, and the Sacramento Bee and more. And his book Fraud, Arrogance and Tragedy in the Quest to Cure Alzheimer's releases February 2025. Welcome to the podcast.
- [00:49]
C
Thanks so much for having me, Kelly.
- [00:51]
B
So basically this book came from investigations and articles that you'd previously published in Science about the research that's been going on for decades trying to figure out the cause and solution and cure of Alzheimer's disease, is that right?
- [01:08]
C
That's right. The articles I wrote for Science, which were investigations of apparent misconduct associated with some kinds of research into the disease, were a point of departure for a bigger story that I tell in the book, which is not a scientific book per se, although there's a lot of science in it. It's a narrative about how we got into this situation, who the players were and what their stories were that brings us through this kind of difficult and sad period of research.
- [01:39]
B
One thing that struck me is, you know, you're introducing all the people and you're trying, you're starting to figure out how they're all connected. And then when you got to the point of like the one companies was just like blatantly falsifying things. And then you go back to the University of Minnesota researchers and I'm like, oh no, they're going to be involved too. So it just like it keeps getting bigger.
- [02:00]
C
Yeah, I'm afraid so. One of the things that is a little bit discouraging for me about this as a science writer and investigative reporter on scientific issues, is that I deeply believe in scientific research. I think that the vast majority of scientists are not just honest and people of integrity, but they're deeply committed to, to trying to further human knowledge and in this case to treat or cure diseases. And it's very disheartening that some scientists, I would say a pretty small minority, but still enough to cause a lot of problems, have been dishonest or who show Signs of having engaged in apparent misconduct and image doctoring that have altered ideas and steered money improperly in the field. And in my view, and I think in the view of many people studying this, have actually slowed down progress towards finding really effective treatments for Alzheimer's disease.
- [03:02]
B
Yeah, like at best, wasted millions, if not billions of dollars and at worst harmed people unnecessarily and delayed progress from looking at other avenues because this just. The dogma of this hypothesis just kept going so strongly.
- [03:18]
C
Yeah, I think that's right, Kelly. And of course, what you're referring to is the amyloid hypothesis of Alzheimer's, which is.
- [03:24]
B
Can you explain that for people?
- [03:25]
C
Sure. Let me actually take people back, way back, more than 100 years to the discovery of this disease by a German scientist, Elwa Alzheimer, back in the early 1900s. And what he sort of defined as a new way of looking at dementia is the three things would define it. One is the presence of what we now know are so called amyloid plaques. These are proteins that accumulate in the brain in various forms, not just as sticky plaques, but also in soluble forms. And the second characteristic is this other protein that has been named tau, which are the so called tangles within brain cells. And the third characteristic, of course, is cognitive decline. So these three characteristics define Alzheimer's disease. Now, fast forward a few decades. Not a lot of research happened into the disease for a long, long time, in part because of a simple demographic reason. Not enough really old people were around to have this disease, be a big feature of our societies that began to change markedly with the incredible medical advances that have happened in the last 50, 60, 70 years. And gradually the population of old people dramatically rose. And now, of course, the population of people over the age of 65, over the age of 70, is gigantic in the United States and in almost all developed countries and even in other parts of the world as well. And so the incidence and the deaths from Alzheimer's have sharply risen and consequently an enormous amount of money went pouring into it. So back in the 80s and early 90s, a lot of really interesting work went on to look at the role of amyloid proteins in the disease. And let's face it, it made a lot of sense because people who have Alzheimer's disease have amyloid proteins in their brains. If they die, and their brains are bodies are autopsied, and their pathologists look into their brains, they see the presence of these amyloid plaques. So there's a lot of logic to that. And so an idea was developed through research, through lab research and other Kinds of research that postulated that these amyloid proteins began a cascade of biomedical effects in the brain that ultimately resulted in dementia. And this so called amyloid cascade hypothesis became the dominant way of looking at Alzheimer's disease. Now, you've already said or implied that this has been kind of an issue and a problem in the field. And I want to address that very briefly. We're happy to talk about it in detail. But I just wanted to say there were a couple contradictions in the development of this hypothesis that has resulted in confusion and concern about how well it defines the disease and the disease process. One is that a lot of people with no cognitive decline after death, if their brains are autopsied, they find the presence of an enormous amount of amyloid proteins. It's very common in people's brains, whether they get Alzheimer's disease or not. So that's sort of an interesting question that raised a lot of eyebrows among scientists and even advocates of the hypothesis acknowledge is a contradiction. The other thing that happened is that many, many remedies were developed that have the ability to flush out a lot of the amyloids out of a person's brain. Obviously people who are alive and have Alzheimer's. And these are usually monoclonal antibodies. So these are lab developed antibodies that mimic the behavior of our own immune systems to attack these amyloid proteins and get them out of the brain. And these have been very successful in removing amyloid proteins from the brain, but very unsuccessful at benefiting patients by improving cognition. Never has done that curing the disease, of course not. And have been provided results that are statistically measurable in slowly benefiting by reducing the rate of cognitive decline in some patients. Now, why is this not an unalloyed great thing in the field? The reason is very simple, which is that the amount of slowing of cognitive decline is so small compared to people who do not receive these anti amyloid antibody drugs. It's so small that even though it's statistically measurable, it may not be clinically significant. A lot of physicians and family members, patients wouldn't even perceive any difference. So that is a pretty minute benefit for what can be a deadly risk associated with these drugs.
- [08:39]
B
Yeah, because as you explained nicely, like when it takes away the amyloid, there's some amyloid in blood vessels, and so it seems to weaken the blood vessels and increase the risk for brain swelling, bleeding.
- [08:50]
C
That's exactly right. There's a condition called cerebral amyloid angiopathy in which amyloid replaces the smooth muscle tissue of some blood vessels and it can be disrupted by these drugs and also basically just cause swelling and bleeding in the brain. Not even necessarily directly associated with cerebral amyloid angiopathy. But in any case, this brain swelling and bleeding doesn't affect every patient who gets the drugs, but it affects enough so that it's worrisome. And it caused the Food and Drug Administration, which has approved a couple of these drugs, to slap a black box warning on the product label for these drugs. That is, as I'm sure your audience would know, is the most stringent, highest form of warning the agency can have. It's a risk of death.
- [09:40]
B
Yeah. Crazy. So how did you get interested in this project? Because when you started, you had no idea it was this big, that there were so many doctored images in the published studies for the amyloid hypothesis that then everybody built their thesis and their drugs upon.
- [09:58]
C
That's a good question. Thank you, Kelly, for that. So, as an investigative reporter, and I've been doing this kind of work for a long time, not just on Alzheimer's, but on many other topics, a lot of people come to me with ideas and tips. In this case, I actually received a tip indirectly from a colleague of mine at Science magazine. And this was the sort of the genesis of the book Doctored, because it was this one case that she connected me with, actually. It was the colleague of a scientist who ended up being, you might say, the principal character, the central character of the book.
- [10:32]
B
Our whistleblower.
- [10:34]
C
Yes, A guy by the name of Matthew Schrag, who is a neuroscientist, neurologist at Vanderbilt University. Very courageous guy, I might add, who,
- [10:44]
B
incredibly, most people would not do what he did.
- [10:47]
C
No, it's junior professor. He didn't have tenure at the time when he was doing all this stuff, and he was risking. Well, we can get into it. But basically angering the people who were central to the development of his career, including top journals, funders, leading scientists in his field, even his own mentor, who was discovered tragically, had himself been implicated in apparent misconduct associated with false images in his papers. So terrible, sad story for shrag. So what happened was I was tipped to important developments in a related story that's described in the book at length. It has to do with a drug called Simufilam from a company called Cassava Sciences. That drug recently kind of crashed and burned because it failed in all of its clinical testing. This was no surprise to many people who had been observing it because there was strong evidence that data had been falsified associated with this drug. In fact, one of the chief scientists behind the drug, was indicted for fraud by the U.S. government. And this is so unusual, an indictment for research fraud, it's just. It almost never happens. But that shows you how extreme that case appeared to be. But during the course of my discussions with Schrag, he clued me into something. He had been experimenting with, how best to identify possibly fraudulent images and testing out some techniques on papers that he just pulled up off of a website called PubPeer, which is a site where people post questions about studies, often questions about the veracity of scientific images. And Schrag was looking at one of these papers and he saw this image and he thought, this doesn't look quite right. The concern about it seemed to be warranted. He was trying to test out techniques for how to examine it further. And then he thought, well, I'll look further at this particular scientist's work, because often if you see one thing, you might see more things. If someone perhaps is cheating on scientific papers, it's usually not a one off. And so what happened was that Schrag just pulled down a bunch of papers from this guy, a scientist by the name of Sylvan Lesney, who is a professor at the University of Minnesota. And up came a paper from one of the most important scholarly journals in the world that I'm sure your listeners know about, well called Nature. And. And this paper was published in 2006, and it was published with a scientist who is a colleague of Lesnay's and Karen Ash. She is an illustrious scholar, an illustrious researcher who had made many contributions to science, to Alzheimer's science, over the years. And Lesney was her protege, working in her lab at the time. In this 2006 paper did something really interesting. This was in a period when there was growing discouragement about the reliability of the amyloid hypothesis of the disease, because there had been failures in the development of drugs and vaccines to treat Alzheimer's based on this hypothesis. And because of these failures, and because of the doubts that were growing about its efficacy, a lot of people in science were wondering if they were basically going down the wrong path. But this experiment was very clever. What they did is they extracted this certain type of amyloid protein from the brains of mice who had been genetically engineered to produce copious amounts of amyloid in their brain. And they took this protein out and they refined a particular narrow slice of amyloid protein that they named amyloid beta, kind of a catchy name, the star protein. And then they took this purified protein and they injected it into rats and the rats very quickly showed what appeared to be memory problems akin to the symptoms of Alzheimer's disease. So this study in Nature, in this illustrious important journal, received an enormous, enormous amount of attention. It became one of the most cited scholarly studies in many years and continued to be for years to come. And the reason is that it was the first time that a particular substance could show a kind of direct cause and effect in the Alzheimer's puzzle. And so when Matthew Schrag looked at the study, he looked at a number of important images that validated the claims in the study, looked at them very carefully. And these were a couple different kinds. There were some micrographs. These are microscopic images, of course, of brain tissue and also Western blots, which are a kind of scientific image that I'm sure a lot of your listeners understand, which are the presence and amount of proteins within a tissue or blood sample. And it's displayed as a kind of a set of irregularly shaped stripes, you might say. So what he did is he found that several of the important images in, in this paper, about 56, the star protein, were actually apparently doctored. In other words, someone seemed to have used a program like Photoshop to cut and paste, remove things, erase certain things that didn't quite support, well, the experimental hypothesis. So this was a profound moment and he and I were both talking this through together, and we're both kind of stunned because we knew that this was a seminal paper in the history of the disease and had been cited thousands of times by many of the leading scientists in the field to support their own thinking about the amyloid hypothesis and other elements of their work. So, very influential paper. And so what I did, of course, is the thing that you have to do if you're a responsible investigative reporter is that, first of all, I had to vet his findings. I had to vet him his reliability, that is Schrag. And then I had to vet his findings. So I showed it to a number of very experienced and well qualified forensic image analysts, and I also showed it to subject matter experts, illustrious figures in Alzheimer's research, both people who were skeptics of the amyloid hypothesis, and also to a guy who, who was regarded as one of the most important advocates of the hypothesis. So what I was going for is one, to see if the experts in image analysis thought that Schrag had done a responsible and good job of characterizing his findings. And I would ask the experts in the field if they thought that the analysis, that these were influential, important and damaging to thinking in the field was a well supported premise that I was pursuing in my reporting. And what I found was that there was total validation for Shrag and his work and his thinking. And this really made me convinced that this, this was something of importance. And of course this again, this was the genesis of my book. The book Doctorate started with this investigation and with its publication in Science magazine that got global attention in the scientific community and also in the popular press.
- [18:27]
B
Yeah, so I was actually an undergrad at the University of Minnesota, was a neuroscience undergrad, went to med school there, graduated from med school in 06. So like reading all of this is like I remember Ash. I remember the pictures of her with the plaques on the walls. Like it was so buzzy at the time of like this person is like Nobel quality research person. Because I was there, I was just a student but like involved in neuroscience. Do you think at this point in talking to the experts that you had, is the amyloid hypothesis dead? Is it, was it a house of cards? Is it done? I understand that people are going to keep using it because it's been around for so many decades, but do the current experts think it's time to move on? This is dead in the water.
- [19:19]
C
No, not in the least. It's still the dominant way of thinking in the field. Although I would say that the thinking in the field is broadening and because even though there's been approval of a couple of anti amyloid drugs in recent years, there's never been a drug that's been produced that can actually reverse any of the effects of Alzheimer's disease, let alone cure it. And so there's still a lot of concern that the hyper focus on the amyloid hypothesis has not well served the development of possible remedies down the line. So there's a lot of interesting thinking going on in the field and it's finally getting some funding as well, which I really appreciate and I think is encouraging. I could mention a couple of the most fascinating ideas right now if you'd like to. There has been a lot of thinking about insulin resistance. That part of it is still, to my way of thinking, a bit speculative. There have also been some, unfortunately some studies in that realm that have shown strong evidence of having been based on doctored images. So I think we have to look
- [20:28]
B
at it, learn from our mistakes.
- [20:30]
C
Yeah, there we go. Or learn from the possibility that these were not mistakes, but were purposeful scientific misconduct. I'm not accusing anyone of anything, but I'm saying that the evidence suggests that there might have been some of that going on. But There is a sort of an interesting development going on in the field related to GLP1 inhibitors. Of course, these are the drugs that have been developed for, primarily for obesity and, to a degree now, for diabetes. And they're considered wonder drugs that could be applied and beneficial for other conditions, or one of those conditions is Alzheimer's disease. There's a major clinical trial going on right now that I think sometime in 2026 we should have the results of that could answer the question about whether the ability of these drugs to reduce inflammation might play a role in helping people with Alzheimer's, perhaps forestalling the impact of the disease, perhaps even resulting in better cognitive effects. We don't know yet, but we're gonna see. Another really interesting and I think quite important development is there is increasing interest in the possibility that infections may play a role in Alzheimer's disease. One set of studies has to do with herpes virus. And I'm sure your listeners know that herpes virus is very common, and it causes cold sores and other lesions on the body that usually go away, and then people feel like they're done and they move on. But the virus can be latent and hang out in some organs for a very long time, sometimes even decades. And one of those organs is the brain. And so there's trials going on about how to treat that and whether that could actually result in beneficial effects on the cognitive decline associated with Alzheimer's. The other thing I think people should never forget is, is that there are risk factors in Alzheimer's disease that we as individuals have some control over. Look, we're not powerless to control our destiny. We can't control everything. There is no panacea or magic bullet to stop yourself from having Alzheimer's, because we don't know precisely all the factors that go into causing it. But we know that one risk factor is something like diabetes. Another risk factor is high blood pressure or high cholesterol, and generally having a healthful diet, exercising, taking care of yourself, taking care of your brain, exercising your brain, exercising your body. These are factors that are important for all of us, just for general health, but could also forestall some of the worst effects of Alzheimer's. There's been research that. That have demonstrated that that's the case. And so I would encourage everyone to remember that we have a bit of control over our own lives and our own destinies and try to exercise that to the degree possible.
- [23:30]
B
Yeah, I was thinking about that a lot, reading your book, because a lot of people think and believe that by the Time you get diagnosed with Alzheimer's disease, something's been happening in your brain for 20 years.
- [23:40]
C
Right.
- [23:41]
B
It started way back then. You lose enough neurons that finally it results in people noticing cognitive decline. And so, you know, in reading the book and thinking like we're trying to sweep out the cobwebs once you're already diagnosed is like you've lost 20 years of damage that was being done, whether it's not amyloid, but just lifestyles. And, you know, in me taking care of older people, the time to do something is when you actually, like, are alert, motivated, and you have your cognition. Because trying to get somebody with cognitive decline to exercise, it's very, very difficult. And so it's like you've got to move that needle when you've got other things going on in your life and you're distracted.
- [24:21]
A
Right.
- [24:22]
B
But that's when you need your brain health more than ever.
- [24:25]
C
Absolutely. And I think it's incumbent on all of us to help each other in that way. I mean, particularly when you realize that there are millions of caregivers for Alzheimer's patients, but also millions of people who just care about their parents, their grandparents, and want to encourage them to live longer, better lives. And we have it within our power to be helpful in that way and not wait to the point where those folks very sadly become a tremendous burden on their loved ones and also have so dramatically diminished lives themselves.
- [25:02]
B
Yeah. Do you have any IDEA why the FDA, it was atacanomab. They, in 2020, they rejected the approval unanimously. And then in 2021, they gave accelerated approval to this medication, which. So I Google searched it, and everywhere, all over Google, it says 26% improvement, 28% improvement. And as you explained, that is actually like, going from 1 to 2 is 50% improvement. Right. So it's like very small changes give you that percentage increase, but clinically, it doesn't do much. It certainly doesn't cure it, it doesn't reverse it, and the risks are significant. Do you have any idea why the fda, after rejecting it one year later, said yes? Okay, go ahead with us.
- [25:47]
C
Yeah, I do have a lot of ideas about it, and it's been well documented what some of the problems were. But what you're referring to is that an advisory committee, which is independent experts, help the FDA assess the safety and efficacy of drugs before they're approved. Not all drugs, but many. And in this case, Aducanumab, which was initially on the market as a drug called Aduhelm, and it's since been taken off the Market because it wasn't very good and was dangerous. But that drug, the advisory committee, basically not unanimously, but it was 11 to 1, said, don't approve this. The 1 was essentially abstaining. So it was really 10 to nothing, don't approve this. And they, they did that because they thought it was both dangerous and ineffective and also because the review process had not been rigorous enough. So why would a review process not be that rigorous? Well, there's, there's a few issues here that I think are worth hearing out. But before I get into them, I want to say that I personally think the FDA is the best drug review and approval agency in the world. And we're very lucky that we have an agency that's science based and stringent and rigorous in its reviews. So I'm not trying to run down the whole fda. I do not subscribe to the idea that there's some terrible set of problems, that the agency should be completely changed or that people should be fired or whatever, as I think some critics of the agency have suggested. But what, what I believe is that there are weaknesses within the agency. One is that they're too influenced by the industry whose drugs they're slated to approve or deny. And one example of that is that people may not realize that industry pays for those drug reviews through their user fees. These are not funded by the U.S. treasury. And I think Congress should fund the FDA to do its own reviews so that it could be freed from that potential conflict of interest. Second, there's an enormously active revolving door between FDA investigators and the companies that they investigate the drugs of. And we really need to make it more difficult for that revolving door to be rotating over and over and over because again, it's another inherent conflict that can result in less rigorous reviews of these important drugs. In this case, there was also a kind of back channel communications going on between top evaluators at the agency and the companies that were promoting the drug. That was regarded as very improper in a congressional investigation. So those were all examples of things that could go wrong and did go wrong. I might add that even though patient advocacy groups for diseases like Alzheimer's often do important work and fund important work, I'm not trying to say that all of their work is bad or all of their activities are bad, but they're often so anxious to show some substantive result for their constituents that they are pushing things like some of these anti amyloid antibodies whose risk benefit ratio is not terrific for patients. And because of that, I think, and because of the fact that they also Receive lot of funding from the drug companies whose products are on the line at the fda. They also have a kind of questionable set of lobbying activities at times. So for all of those reasons, I think I'm just saying that there are problems in the fda. We need to build it up, we need to make it more rigorous. We need to make sure that it views image doctoring as part of its routine procedures for examining applications for new drugs and strengthen it so that it can serve us, our society, in a better way.
- [29:40]
B
Yeah, absolutely. You're talking about who's in charge of regulating.
- [29:44]
A
Right.
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B
And it's like there's holes in the fda, there's holes in the nih, there's holes in journal article approval oversight. There's holes in universities do not want lights shone on them for being questionable about research, just inherent in any system that has humans in it. Not one of them should be responsible. Maybe they all should be a little more responsible. How do you kind of take all of this knowledge now and be like, all of these holes allowed this to happen for so many years. What do you think a semblance of a solution would look like?
- [30:20]
C
Yeah, so let me say that again. I think our universities, our funders like the National Institutes of Health, our regulators like the FDA, and the scholarly journals that publish scientific findings, by and large have done incredibly great work. But they all have weaknesses pertaining specifically to the topic of my book, Doctored is weaknesses associated with monitoring possible misconduct in the field. And so what they need to do is strengthen their systems, and we need to remove inherent conflicts of interest from the assessments of possible fraud or possible misconduct in the scientific infrastructure. So let me address universities directly. Nearly always falls right on them to assess whether one of their scientists has engaged in image doctoring to further falsely a scientific idea. Well, the universities have the most to lose and the least to gain by doing a robust, prompt and publicly accessible investigation of those issues. Because there's the embarrassment factor. They could lose money. So we need independent agencies to be able to do those examinations. We need a consortium of experts who would be able to come in and assist universities to do a serious examination that is of great public interest. Same thing goes for the National Institutes of Health. They need to increase their vigilance in grant applications and in the way they monitor their own employees, even their own leaders who might have engaged in possible image doctoring or other forms of conduct in their own work. Just to give you an example, at the National Institutes of Health, the guy who was hired some years back to lead the National Institute on aging was the subject of an investigation that I did. I'm sorry, let me rephrase that. Not to lead that agency, but to become the leader of their neuroscience division, which is the division that is principally responsible for funding Alzheimer's work. This guy was brought in. They did not do any due diligence on the possibility that the images in many of his papers might have been the result of falsification. And my investigation with the assistance of Matthew Schrag and several other leading forensic image analysts showed that in 132 of his papers there were signs of significant image doctoring or other changes or other misuse of images that could have a bearing on his ideas in Alzheimer's and Parkinson's disease. This was the guy who was put in place at the pinnacle of the decision making process for leading Alzheimer's research, development and neuroscience development in our country. Day my story came out, he was moved out of that job, so that's good. But there was no proactive examination of his work by the national institutes before he was hired. They need to get more serious about this. The same way journals, universities, regulators, all need to be more serious about the importance of this.
- [33:33]
B
Do you think AI is going to help? Can you put an image through AI and AI can like be a Matthew Schrag times a thousand?
- [33:41]
C
Well, yes and no. So it's a good question, Kelly. Yes, AI programs now exist. There's a couple of them that are very important that are used by image sleuths like Shrag and others to do kind of a first pass at what might be going on in a paper. They're instrumental to doing that. Then you need human eyes to validate and verify what those concerns might be. So it's a two step process. But by the same token, AI is also a tool for falsification. It's kind of an arms race. And so it's both like any other tool, you have to use it for good. And I think people are very concerned that AI may make things harder. But I also feel very confident that right now there's, you might call it, a kind of a small army of image sleuths out there who in their own spare time and for usually for no payment at all, are going out and examining papers, examining images and trying to call possible problems to attention and getting them to be looked at in a serious minded way by institutional authorities. So if fixes need to be made, they can be made.
- [34:48]
B
I like how you describe that group of people in your book as they're kind of like this, like basement Underground video game. But like they're the heroes. Them and Matthew Schrag are the heroes to be like, dude, they don't have any university grants, you know, they don't have any career on this. But they like, they love data, they love figuring it out. And at the end of the day, like they want accuracy and truth in medical science.
- [35:12]
C
That's absolutely right. And I might add that they've been putting the scholarly journals to shame and forcing the scholarly journals to shame to do better, which is a good thing. But there's a lot of distance to travel in that regard.
- [35:25]
B
Do you think this might be out of your wheelhouse, but something I think of. So I mean, I, I basically am a translator as you are. Right, we're translators. We like take the science and we make it explainable for people to understand. I have access behind the paywalls because I'm in with, you know, medical libraries, I'm a physician. And it's like government dollars, your tax money goes to government dollars, it goes to public universities for people to get paid to do research, and then goes behind a journal paywall that nobody can access. Do you think that's going to change?
- [35:58]
C
Well, I think it is changing to some degree. There are some open access journals now. I personally work for a nonprofit scholarly journal outfit. It's the American association for Advancement of Science, which is the publisher of Science and a number of other related journals, sister journals you might say. And I personally think there needs to be a lot of movement in that way. There are big scholarly publishers who make enormous profits.
- [36:27]
B
Do a 30%, 40% profit on these companies?
- [36:30]
C
Yes. And I might add that it ties into a set of other problems within the publishing industry for scientific publications, and that is the development of these journals that are phony journals that are kind of pay for play and they entice desperate academics or others to pay for authorship on what may be false papers, sometimes not false, but often false papers, and these so called paper mills that produce hundreds, thousands of such papers all the time. And it's a big problem in publishing because it raises questions about the accuracy and believability of the publishing industry overall. And so I think part of the problem is that when such enormous profits are being made and such big walls are being placed around these industries to prevent more legitimate publishers from getting a foothold in a way that they can make a living doing it, it can create other unanticipated problems. So I'm not an expert in that realm, but I certainly agree with you that a lot needs to move in that realm in order for these kinds of information to be more widely accessible to the scientists, doctors and individuals out in the public as a whole who need the information to guide their decisions.
- [37:53]
B
One other thing I want to pick your brain about is the role of like medical websites, medical leaning websites that take papers and then create headlines that are not even what the paper said. They don't explain things at all. If I'm lucky, they'll link a paper. Right? So like this came to mind because it was literally last week somebody sent me a link from, again, it's a health forward leaning website and it said, men scientists now know the amount of times a week you need to have sex to prevent a heart attack. I was like, that's very click baity. Right? So you, they actually pub, they actually linked the paper. So I pulled the paper up and it was a observational study correlating your yearly sexual activity of only certain amounts of sexual activity to risk of death and actually showed if you had more sex, you actually died more than if you didn't. So but to me, I'm like, people don't have time to read these like I do because I'm a nerd and this is like my job is to like call out stuff that's not real and. But it's like it didn't even say what the paper said. But where are people supposed to get their information from if you've got these like, you know, air quote health websites, science websites that are taking published papers and completely manipulating the message, which I feel like is getting more common.
- [39:21]
C
Yeah, boy, if I had a solution to that, I'd be a billionaire. Perhaps I do not have a solution to it. But I, I want to say that I think your audience, which is a pretty sophisticated audience, probably understands very, very well that you need to go for trusted sources of information. And I think the tragedy of this, the difficulty of it is that people are not just being misled, but they can be really harmed, directly harmed, and sometimes their lives endangered by false information on the web about serious illnesses. And so I think the goal of legitimate journalists in this field and the kinds of people that I am proud to work with and call my colleagues, are trying to translate this information in a way that's understandable, discernible to most people and to create sources of information that people can call upon to get a reality check.
- [40:20]
B
Yeah, I mean I think that's substack being one thing. People really want fact based information. They're willing to go to good sources to get it. And it might not be mainstream media anymore.
- [40:32]
A
One thing I was thinking in reading
- [40:33]
B
your book is like, I was indoctrinated by the system. I paid money to get a medical degree from the system. I went to the University of Minnesota for many years. And I read your book, and I'm like, holy crap, there's holes everywhere. I'm not thinking, burn it down. But I certainly understand people who aren't in the system, seeing the big money being made, seeing these big institutions protect people who are committing fraud over and over and over to keep the dollars going, and they want to burn it down. It's hard to see the overall benefit when you just realize, like, oh, my God, is this just a big money laundering scheme at some point? Not to be dramatic, but can you give us hope in the system as far as, like, can we right this ship?
- [41:23]
C
Yeah. Well, you know, one of the reasons I wrote this book is that, in a way, Alzheimer's is a bit of an exception among the major killers out there. When you think about things like heart disease, cancer, diabetes, stroke, various other big important causes of death, particularly in the elderly, you see that we've made tremendous progress in battling those, tremendous progress in reducing people's symptoms and sometimes even curing people from things like cancer and heart disease and what have you. And that is because we have a robust, multifaceted, and amazing system for developing remedies and understanding science better. So that's because we have great institutions, institutions that I respect and that I think people should respect. I do not subscribe to the idea that there's some sort of terrible cabal of people who are secretly trying to harm us or that these institutions, as you say, have to be burned down to the ground and rebuilt from scratch. Do not subscribe to that in the least. I respect these institutions, but basically we need to be realistic. They're human institutions. They've made mistakes. They need help. They need people to set them back on track. And there's a new administration coming into Washington, as we're all aware, and they have some radical ideas, many of which I do not subscribe to. But one thing that I do subscribe to is giving these organizations a critical look and trying to help them improve their activities and their stringency of ensuring that drugs and treatments for dreaded diseases are looked at very carefully. That's an important goal that could benefit the public and don't need to burn it down, but you do need to make it better. I love that.
- [43:16]
B
Final thought before we leave is you say people pitch you ideas all the Time. So what I want to know is why hasn't this been done? And do you know if somebody's working on it? But the Women's Health initiative, the big NIH study that came out in 2002, basically scaring the population. That hormone cause cancer. It's created enormous damage. The amount of depression, bone fracture, heart disease, dementia, that's gone up because we took hormones away from women and then didn't give them back. We know the WHI was wrong in how it applies. We know not all doctors wanted that to go to the media because it hadn't been peer reviewed or published yet. We know that there's like a big expose book or documentary waiting to basically put your journalistic lens on this and be like, holy moly, we screwed up. Let's learn from this so we do not do this again. My question is, who's going to do that? Do you know of anybody who's working on it?
- [44:13]
C
Well, I'm ashamed to say that I'm very naive about this, but it sounds really important and naturally I'd like to alert some of my colleagues about it and see what's going on. But no, I don't.
- [44:23]
B
I'm afraid all of my listeners are going to be like, charles, you got to help us.
- [44:27]
C
Okay, well, they can find me if they want to. I'm always open to tips, Charles.
- [44:33]
B
That needs to be done. People.
- [44:35]
C
I'm always open to hearing from people. Be grateful to hear your thoughts and ideas and tips, of course. And you can reach me. I have a new website, charlespiller.com easily. Find my contact information up there and really appreciate your questions, Kelly. And the things that you're thinking about are things that I'm thinking about.
- [44:54]
B
So for anybody who wants a whodunit and who likes science and who likes underdogs, doctored is coming out February 2025. Thanks for coming today.
- [45:05]
C
Thank you so much.
- [45:07]
A
Thank you for listening to this week's episode of youf Are Not Broken. If you want to dig deeper with me, sign up for my Adult Sex Education Masterclass where you learn adult things like communication skills, anatomy lessons and desire types, and how to talk to your doctor about sexual health concerns. If you want the Adult Sex Education Masterclass for free, join my monthly membership for more in depth exclusive content, more time with yours truly, a private podcast, coaching and educational empowerment. And you can watch my interviews live and get them immediately without advertising. Head over to www.kellycaspersonmd.com for the membership and Adult Sex Ed Masterclass members. Get the Masterclass for free. This podcast is presented solely for educational, entertainment and informational purposes only. I am a doctor, but not your doctor in this format and all of my platforms and guests including on this podcast are not giving individual medical advice or practicing medicine. See and consult with your own care team for your individual needs and concerns. This podcast is not intended as a substitute for the care and advice of a physician, doctor, therapist, or other qualified professional. This podcast does not constitute the practice of medicine, in case you were curious about that and no doctor patient relationship is formed. But I still love you. Using the information on this podcast or any of my platforms is at your own risk. Until next time, Remember, you are not broken.