Show #418 Fraudulent Alzheimer’s Drug Research has led to 20 years down the wrong path – Investigative journalist Charles Piller explains

      

About this show:

How can 20 years of fraudulent science pass? It’s complicated. It’s not just vested interests but humans, desire, ego, hope and poor checks and balances.

“Doctored”, the new book by investigative science journalist Charles Piller, is an arresting deep dive into how Alzheimer’s disease treatment has been set back by corrupt researchers, negligent regulators, and the profit motives of companies for the past nearly 20 years.

I genuinely believe it’s one of the most important conversations I’ve hosted on the show, in a time where many have become blanket skeptics of science – while we explore this hectically fraudulent research: I asked Charles: Is there hope for us to ever believe again in the scientific method?

He walks us through his investigative process after the initial tip off, how he gathered information that was robust enough to draw a conclusion, and then how, despite uncovering this research and nearly 20 years of fraudulent claims, he naintains hope and a lot of trust in the scientific method.

I hope you find the show as powerful as I did and it doesn’t feel too heartbreaking but rather more like we are finally now closer to knowing how we can make progress by carving a new chapter in Alzheimer’s research for cause and cure.

Alexx

Charles Piller is an investigative journalist for Science magazine and his work has appeared in the Los Angeles Times, the New York Times, the Sacramento Bee, and more. Piller has been honored with many national journalism awards, and is the author of Gene Wars, The Fail-Safe Society, and Doctored. He has reported on public health, biological warfare, infectious
disease outbreaks, and other topics from the United States, Africa, Asia,
Europe, and Central America.

Check out Charle’s latest book Doctored here.

 

 

Alexx Stuart

Founder of Low Tox Life and the Low Tox movement

Join me on Insta @lowtoxlife

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About Charles Piller

Charles Piller is an investigative journalist for Science magazine and his work has appeared in the Los Angeles Times, the New York Times, the Sacramento Bee, and more. Piller has been honored with many national journalism awards, and is the author of Gene Wars, The Fail-Safe Society, and Doctored. He has reported on public health, biological warfare, infectious
disease outbreaks, and other topics from the United States, Africa, Asia,
Europe, and Central America. Follow him on X @CPiller.

X: @cpiller
LinkedIn: Charles Piller
Booktopia: https://bit.ly/4151PRZ

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Title show track, by LIOR.

Love the podcast music? You will hear excerpts from Lior’s track “Caught Up”  – go check it out on iTunes or Spotify if you want to hear the whole song or album, Scattered Reflections. Co-written with Cameron Deyell, it’s a great song and I love the reflective energy of it – perfect for the show, right? Enjoy. Lior is always touring, so do check out his website. It is wonderful to hear him sing live, trust me.

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If you would love reading like me or you just simply want to go through the full transcript, you can check below.

[Alexx Stuart] (0:00 – 10:58)
How the last 20 years of Alzheimer’s research may well have led us down the wrong path and caused millions of people unnecessary pain and false hope. That is today’s show, folks. Hello and welcome to the Lotox Life podcast.

I’m Alexx Stuart, your host, founder of the Lotox movement, and today we have an absolute doozy of a show. I came across Charles Piller’s work actually over the years. I’ve seen his name pop up in genetic modification and gene altering research, also speaking on AI.

And what I found most recently was that he was one of the people investigating some of the drugs that were being built off the back of the amyloid hypothesis when it came to Alzheimer’s research and the race to find a reversal and a cure. And now, you know, I’m passionate about this topic. We’ve had my grandmother had dementia, my grandfather on dad’s side as well, and at the ends of their lives, and it is heartbreaking.

And I know people today dealing with Alzheimer’s. My godfather’s wife had early onset Alzheimer’s. It’s tragic.

You’re not only dealing with a disease, but the loss of a loved one who’s still alive in one way. And it is just so much for us to deal with as the people who love them and as the friends who are trying to support the people going through these situations. So Charles is an incredible investigative science journalist by trade, decades of experience, and I genuinely hope that as you listen to this show, we all remember how important our own due diligence is when exploring any topic and whatever anyone is saying about a topic to seek out people diametrically opposed to that point of view or to that so-called fact and find what floats to the top.

Only once we have explored multiple perspectives and avenues, not multiple people saying the same thing. That is different. I’m very grateful for all those painful 10,000 word essays I had to write at university that constantly made you explore perspectives and see what floats to the top to back your conclusions.

And I genuinely believe social media has disastrously altered our ability to do so and made us lazy in a way. We’re very readily jumping on bandwagons and Charles so methodically researches his topics and the people that he interviews so that it is impossible for anyone to think he may have cherry-picked whatever conclusion comes from the investigation. So it just gave me a lot of hope to know that we have people like Charles in the world doing this and to go through the unbelievable revelation that has occurred since 2022 that the research and hypothesis that came out in 2006, so nearly 20 years ago now, has led us down the wrong path.

Now, of course, we’ve had amazing scientists on the show like Dr. Dale Bredesen who has been sounding that alarm for a long time and talking about the importance of testing and cognitive decline analysis, the why, what is playing into the setting of the stage and how there are actually many different forms of causes that play into an Alzheimer’s diagnosis. And so we’ve kind of known this as a community that there just wasn’t something stacking up right. And I hope you enjoy today’s show.

It really is a brilliant way to calmly explore a subject, to understand how we can do that ourselves more. I ask a lot of general questions for Charles’s advice as we all try to explore a world where it becomes harder and harder to see a very clear picture of how things are. And I’m really proud of this conversation.

I can’t say it enough. It’s one of the most powerful shows we’ve ever done. So I will hook into that in a little minute.

I implore you to buy the book Doctored. It is a brilliant book. If you find today’s show interesting and tell me how you go, tell me what you think.

I cannot wait to hear the feedback on this show. Of course, we can’t put this show on without our wonderful partners who help you make low-tox swaps. And we have our major partner Oz Climate.

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And now let’s talk about Alzheimer’s, the last 20 years of research and product development and how on earth we could have gone so wrong. Charles, hello. How are you?

[Charles Piller] (10:58 – 11:00)
I’m well. Thank you so much, Alex.

[Alexx Stuart] (11:02 – 11:44)
Well, not a light topic today. And I’ve had the great pleasure of interviewing neuroscientists, neurologists and integrative doctors over the years who care deeply and passionately about the subject of Alzheimer’s, as well as being a human who has experienced this through family, close friends, as most of us have, unfortunately, in this day and age. And I’d love to start by asking you as an investigative journalist, did this come and find you or did you go looking for it when you wanted to look into Alzheimer’s research?

[Charles Piller] (11:46 – 13:44)
Well, in this case, it came to me. And it was a tip via a colleague, actually, who was approached by an important neuroscientist who had a connection with someone in the field who had been involved in looking deeply into research that appeared to be fraudulent associated with a drug for Alzheimer’s that was in clinical testing. And I think people who are listening must understand that clinical testing is human experimentation with a drug.

It’s very important, very necessary to ensure that a drug is safe and it works well. And so this human testing is part of every drug development program. Now, that said, in this case, there were signs that this particular drug was based on research that was invalid and in fact had been falsified.

And when I learned about this and grew more deeply, as I grew to understand it more deeply, I was able to understand the process that this particular scientist who uncovered these problems went through and what his thought process was. This is a guy by the name of Matthew Schrag at Vanderbilt University who kind of in his own spare time felt that his ethical obligation as a scientist was to look deeply into the potential misconduct associated with this drug being made by a company called Cassava Sciences, a biotech company. And so that’s, I was drawn into it through a tip.

And then for many months after that, it was a process of building a relationship with Dr. Schrag so that he and I understood each other, that we grew to trust each other. And of course, do my own due diligence about his authority, authenticity, and his knowledge to be able to make the claims he was making.

[Alexx Stuart] (13:44 – 15:21)
Can we unpack that a bit? Because I think in this day and age, there are a lot of people who are very suspicious of scientific research. I mean, if I see another front page time cover with a food on it that says it’s evil, and you know, I think, oh, yeah, and then in 10 years, we’re going to find out that actually, whoopsies, no, it’s not.

It’s this or it’s that. And I think COVID has actually made people extremely suspicious and started to understand for many people, for the first time, vested interests in scientific research and wanting to be that save the day company, not just to save the day, but also because of economic pressure to continue to grow profits, thanks to GDP theory becoming kind of law as to how we consider something successful in business. And so now we find ourselves dissing anything that claims to be good for anything or bad for anything. It’s almost like, what is true anymore?

And I don’t even have time to unpack this. And so I’m just going to share something quickly on socials after having read a headline. I wonder, as an investigative journalist, if you can step us through what actually building a case for or against is and what it looks like, and how you stay comfortable with some of the nuances you would surely find along the way.

[Charles Piller] (15:24 – 19:29)
That’s a really excellent question. And I think it’s important, first of all, for all of us to have some skepticism about received wisdom from experts. Now, that said, I want to make it clear from the outset that I personally think science is so vitally important and that the vast majority of scientists, including Alzheimer scientists, are honest, deeply determined people who very much want to do something useful in the world.

And I trust their ethical conduct and their determination, even though, of course, these are people who sometimes make mistakes like all of us do. There is a small minority of people who are deliberately engaging in a kind of misconduct that can distort the scientific record. They might be doing it for profit.

They might be doing it for professional laurels. They might be doing it because they are just looking for a bit of career advancement. And all of these cases have to be looked at with great care.

For me, there’s a couple reasons why I’m extraordinarily careful about stories like these having to do with concerns about drugs that people might take or about research leading to the possibility of a cure of dread diseases. One is that people need hope. They need to believe that the institutions of science are, like them, moving always towards the possibility of finding help for their condition.

And I believe that, on the whole, that’s true. The second thing is that accusations of potential misconduct in the life of a scientist can be career-ending. And I, like any responsible journalist, would want to take incredible care to be sure that the findings that I am making associated with my research and my reporting on a particular person or their work are well-supported and well-justified.

So when you ask, how do you go about this? How do you go about differentiating between conduct and research that’s completely legitimate and might be valuable or might even be mistaken but based on an honest mistake versus work that seems to have been intentionally manipulated. It’s a very elaborate process and it includes two kinds of examination.

One is that I have to be very careful that the experts with whom I’m working, and that includes, in the case of many of the stories that I do, experts who look at scientific images and help me understand whether they are images that have been inappropriately doctored, as the title of my book notes, whether they have been intentionally manipulated to support improperly a scientific hypothesis, or if they perhaps were just misused or mistaken, or maybe they’re completely legitimate images.

So I need to find people who know that part of process extremely well or well-established and credible as forensic examiners. And so I have a pool of people I’ve called on over the last few years who have done excellent work in that realm and whom I trust, but I don’t just trust one of them. I go to several for every story that I do and many for the book that I just wrote.

And the reason is that, just like the scientists, these people are doing the best they can, but they also might make mistakes. And I want to vet their work with other experts in their field to make sure that there’s general agreement about any circumstances I find that are suspect before I talk about them in an article or a book. So that’s step one, vet the vetters, you might call it.

[Alexx Stuart] (19:29 – 20:02)
Yes, and vet them from multiple perspectives. And from what I’ve heard you talk about in other interviews and through the book, it’s important to find people who vehemently even disagree with some of the people that you are working with to see why they disagree, and if that stacks up. I mean, my wish is that we all did this for deeper understanding and for real truth to float to the top.

[Charles Piller] (20:02 – 21:31)
Absolutely. I think that’s a really important point, Alex. And let me explain that process of finding people who stand on different sides of a scientific question, because some of these experiments are oriented in a way that if they are faked, if it’s fraudulent research, they might support a particular hypothesis about Alzheimer’s disease in this case.

And one of the big stories I did a couple of years ago had to do with an experiment that was regarded as incredibly important in supporting the ideas behind something called the amyloid hypothesis of Alzheimer’s. And that just briefly to digress, that hypothesis involves the idea that these proteins called amyloid proteins, they start to clog up your brain in a sense. They become deposited between brain cells, and they come in different forms.

The most commonly understood one is something called the sticky plaque form of amyloids, and these are deposits that are thought to lead to a cascade of biochemical effects in your brain that leads to dementia. And so this is a disputed hypothesis. It’s very important and very well supported by a lot of scientists.

But increasingly, skeptics about this believe that it’s oversimplifying, or perhaps simply just wrong about the cause of Alzheimer’s.

[Alexx Stuart] (21:32 – 21:46)
Yes, I’m hearing some scientists talk about it much more like we’ve started to understand cholesterol to be a messenger that there’s something wrong, and to be trying to fix things rather than to be the bad thing itself.

[Charles Piller] (21:47 – 24:08)
That’s an excellent point that some scientists have certainly made. For example, I think it’s undeniable that there’s a relationship between amyloid deposits and Alzheimer’s disease. Even most skeptics of the amyloid hypothesis believe that there’s something there that has to be looked at.

But simply attacking those amyloid deposits doesn’t seem to be effective, and we can talk about that more in the interview. One analogy that Matthew Schrag, the scientist I mentioned earlier, has used that I think is apt is that if someone comes into a hospital with a stab wound, you know that the knife caused damage in the person’s body, but simply removing the knife does not cure the wound. And so you could imagine that simply removing amyloid deposits from the brain, which is now possible through these so-called anti-amyloid antibody drugs, is not curing Alzheimer’s disease.

So you realize that the idea behind this is complicated and needs examination from a variety of perspectives. But to get back to your immediate question, is that why do I go to people who are both supporters of the amyloid hypothesis and also people who are skeptics of that hypothesis? It’s because what I want to do is ask them, if this particular experiment was based on fraudulent actions, was based on image doctoring, and is faked science, what is the meaningfulness of it?

And if I just went to people who were skeptics of the amyloid hypothesis, since in this case it was an experiment supporting that hypothesis, then people in the field might think that I was somehow cherry-picking opinions in order to support a particular kind of point of view. So I went to people who were some of the most important supporters of the hypothesis in the field and asked them the same questions. Do these experiments look tainted?

What’s the meaningfulness of it? What is the importance of this? And got their perspectives on it as well.

That way, I feel that I’m rock solid in having a story that answers a lot of questions, even before other people are anticipating those questions.

[Alexx Stuart] (24:08 – 24:44)
And this isn’t your first rodeo, looking into some pretty contentious scientific subjects such as genetic alteration and technology, AI and science research and the implications there. I’d imagine there are certain people who don’t love you poking around, Charles. Have you ever, I can’t even believe I’m asking this, have you ever felt threatened?

Have you ever felt like, should I really go down this avenue? This seems a bit scary.

[Charles Piller] (24:47 – 26:27)
Well, I’ve never hesitated from jumping into an important area of research, of reporting for stories. So the answer to that is no. That said, yes, you have to be, you have to take these things seriously.

I’ve been threatened many times. In this realm of research falsification, the threats have been a combination of the normal things that a person like me might get online from online trolls. Being trolled, yeah.

Yeah. I mean, you have to try to put it in perspective and realize that most of this is bluster and threats by people who have a motivation to do that, but are not to be taken very seriously. The threats that I’ve received on this work has primarily been legal threats, which I take very seriously.

You have to as a journalist. And I can assure you that every time I’ve had a legal threat, it’s been terrible. Terrible because it takes an enormous amount of time to deal with.

You have to respond. You have to take it seriously. It’s cost an enormous amount of money from the attorneys for Science Magazine, which is my day job when I’m not writing this book.

And I have to say that I, because I take it seriously, because I take my work so seriously, that I double, triple, quadruple fact check everything in every article and in the book. I don’t get things wrong very often. And none of these threats have come to anything.

Doesn’t mean they’re not pretty horrible to have to deal with, but I’ve never actually been sued over this work at all.

[Alexx Stuart] (26:28 – 26:42)
Wow. And I think that’s a testament to, as you say, that triple check, quadruple check, multiple perspectives, what is floating to the top. And you won’t be able to get me on that because there’s this and this.

[Charles Piller] (26:43 – 28:36)
Let me just add, Alex, if I may, that part of why I’m so careful in any story that might present evidence suggesting misconduct occurred is that I have some empathy for the people who have possibly engaged in these unethical acts. And I know that sometimes they’re facing contradictions that have shown to be hard to resist. And they’re facing temptations that have such benefits in their realm, in their field, in their career, that they take steps to do things that many of us might hesitate to do.

And maybe they themselves felt a contradiction about it in their thinking and in their lives. But they went forward. So they’re human beings, first of all.

But second, the consequences of being wrong when you have an article that accuses someone of misconduct, I don’t want to live with that. I don’t want to live with myself for having improperly accused someone in this way. And consequently, when I do the reporting, I don’t just try to gather the information, have it vetted, and get expert opinions on it.

But I also, of course, go to the subject of the investigation. And I try to get their view on it and to give them every opportunity, not just to respond, but to respond with full knowledge of the research and the reporting that I’ve done, full knowledge of what the claims and concerns are against their own work, so that they have a fair opportunity to respond. And, again, I’m happy to say that I haven’t been contradicted by the subjects of these stories or of the book.

I haven’t been told by them, you got this completely wrong, and you shouldn’t be writing about this.

[Alexx Stuart] (28:38 – 29:11)
Right. And it seems that, and you talk about this in the book, that you actually found quite a few discrepancies when it comes to Alzheimer’s research and that fraudulent practices were common or even normal in some part and to some degree. And like, is this, how does one unpack that and deal with it once you kind of start to realize this is going on?

[Charles Piller] (29:12 – 29:15)
Yeah, I think it’s very sobering.

[Alexx Stuart] (29:16 – 29:42)
It is. I mean, there’s millions of families around the world who live in the hope that this next drug trial or this next drug that comes out onto the market will finally bring their husband back, bring their mom back, bring their grandma back. And then we find out that things can be doctored and all the checks and balances that we thought were there are in fact not good enough.

[Charles Piller] (29:43 – 31:07)
Yeah, it’s a very discouraging picture. Now, let me just say before I describe how I think about that to say that I believe deeply in the importance and efficacy of well-constructed science and scientific experiments, including clinical studies for Alzheimer’s drug development. And again, I think most scientists are people who are very ethical, who are deeply determined to help cure diseases, in this case, Alzheimer’s disease, and are trustworthy.

Now, that said, I think the degree of problems in this field, the amount of misconduct, has been poorly understood until quite recently, and it’s pretty enormous. The thing that I would like to emphasize is that even if most scientists are honest and determined to do the right thing, a relatively small number of studies that are fraudulent, if they are hitting certain pivot points in the field, can be unduly influential and can steer the field in ways that are not just improper, but slow down the pace of progress.

[Alexx Stuart] (31:07 – 32:03)
Oh, I totally agree. We see this in the land of supplements all the time. You’ll see 40, 50 people were studied for a particular probiotic strain, and like a few of them found themselves in a really positive uptake of health benefits.

And then a whole company might be created or a whole line of supplements, only to then find out that a particular probiotic, it turns out, ain’t so great for people with neurodegenerative diseases, that very one that was supposed to save the day for gut health. And we see this everywhere. And I think it is part of it, like the human desire for success and our little hope spike that we might be the person to save the day.

Does everyone want to be the hero? Does that play into it more than we might think?

[Charles Piller] (32:03 – 33:28)
I think the motivations are varied, but yes, I do agree that there is this sort of great determination among many in scientific fields to make that big discovery, to have the professional acclaim and prestige and the awards and the kinds of benefits that come from great success on top of, of course, the ultimate success, which is helping thousands or millions of people with a cure for a dreaded disease. Alzheimer’s, for example, is such a stubborn, terrible, and heartbreaking ailment.

I mean, even compared to many of the other illnesses that have been the greatest sources of debilitating illness and death among the elderly, Alzheimer’s has proved to be in a way the worst, the most difficult problem to solve. Even things like heart disease, stroke, diabetes, problems that have haunted elderly people and people of all ages to some degree for many, many, many years. Those illnesses have been tackled effectively by a combination of drugs, lifestyle changes, surgery, radiation, all kinds of things have been helpful.

In the case of Alzheimer’s, it’s kind of a black box still.

[Alexx Stuart] (33:28 – 33:29)
There’s still a lot of mystery.

[Charles Piller] (33:29 – 33:32)
And you lose your person. That’s exactly right.

[Alexx Stuart] (33:32 – 34:21)
That’s the real kicker. Like even with your very sick person who’s in the bed and going to die soon in a hospice of cancer, you’re still in relationship. They’re still with you.

And, and that is for me, the really tough part of Alzheimer’s when you’re on the phone to your and she thinks you’re a little boy or, you know, and it’s just, it’s so much harder because you lose the relationship as well. I’m not trying to belittle any other disease by the way, but I think the human connection piece is, and the loss of self is truly one of the most heartbreaking aspects of why this makes it so bad.

[Charles Piller] (34:21 – 38:08)
And it makes it terrifying, not just for the people who maybe are having the early stages of Alzheimer’s symptoms, but also for their loved ones who are caring for them and living through it as well. So when you see circumstances of research being faked or drug development being done purely manipulated for profit, it’s very, it’s very discouraging. And you, you see that the kind of the complacency in the system that allowed those things to happen is pretty much inexcusable.

But let me just backtrack just slightly and tell you one little story, human story in a sense about how people get caught up in these things. So one of the characters in the book is this scientist, her name is Lindsay Burns, and she was the chief neuroscientist at a company called Cassava Sciences, which had been developing a drug called semufolam, which is a supposed to be a Alzheimer’s drug that would cure the disease. And Burns, she’s a really interesting person.

She was just sort of a star at everything she taught. She was, literally was, won a silver medal for her for rowing. And she went on to be trained in neuroscience at Harvard and at Cambridge University in Great Britain.

And, you know, these are elite institutions that show her incredible promise as a student and knowledge in the field. And she went on to work with this company developing what at first seemed to be one of the most innovative and promising drugs that had been developed for Alzheimer’s in decades. And yet, as information gradually came out that this drug was based on apparently falsified science, one of the chief scientists, her colleague with whom she developed this drug, was indicted for fraud.

Eventually, the drug failed, and the company stopped all of its existing trials. And, of course, the value of the stock in that company plummeted as a result of that. And it looks like it’s pretty much on the rocks as a result of it.

Now, the reason I bring up this subject of Lindsay Burns is that she’s a person who one could imagine had the best of intentions from the beginning. And one could imagine was someone who was used to succeeding in the world, used to be a world beater, and used to be someone who could excel at whatever she touched. And very inspiring person, I might add.

And yet, the expectation of success, and the self-confidence, and the perhaps the fear of failure might have motivated some of her actions. Now, there is, of course, the whole financial economic part of it, too. When you, like she, had so much profit to be made from the success of something like this, even before it ever comes to market, because there’s an enormous amount of money to be made from changes in the value of stock based on expectations of success of a drug.

And so, she and her husband, who was the CEO of this company, made an enormous amount of money based solely on changes in the value of the stock from their own holdings in the company, Cassava Sciences. So, you see, there are powerful motivators, personal motivators, and financial motivators that sometimes lead people into areas where suspect or even fraudulent research can occur.

[Alexx Stuart] (38:10 – 38:20)
And can you describe the moment where you were convinced it was fraudulent when it came to this drug, and that the research had been doctored?

[Charles Piller] (38:23 – 41:16)
Yeah, it’s a good question. I can use this and also tie it to some serious questions about whether the regulatory powers were doing their job in an effective way in this case. So, when I started to learn about this drug, a lot of work had already been done about it.

So, I mentioned this guy, Matthew Schrag, who had created what we call a dossier about many of the basic science experiments leading up to the drug. So, just for listeners who are not familiar with how the science of drug development works, usually there are laboratory experiments, sometimes involving test tube work and sometimes involving animal studies that begin to flesh out the way in which a drug operates and whether one could hope that it could have beneficial effects in people. And then after that, you go into testing in a very small number of people.

These are called phase one tests. And just this is purely to see if the drug is not harmful. Yeah, not outright toxic.

Exactly right. And then it goes up into testing for both safety and efficacy. But these laboratory experiments, the first level of proof of the possibility that this might be a good drug, were ones that were found over and over and over by Matthew Schrag to have been based on apparently doctored images.

Wow. So, right at the phase one level. Even before phase one, just in the lab.

Just in the lab. Before any people even took these drugs, there was evidence that the studies associated with them that led to the approval of the drugs for these phase one safety studies, that that work in the lab was falsified. Strong evidence that that was the case.

And so, personally, I felt after that I had vetted Schrag’s work, after I had vetted it both with forensic image analysts to validate the idea that he had, that there were doctored images. And after I had vetted it with experts in the field who understand the meaningfulness of these changes. In other words, were these changes done to, sometimes they say beautify an image to make it look better, but not fundamentally change the results of an experiment.

A bit of scientific Photoshop. Yeah, exactly. Right.

Exactly. And believe me, Photoshop is very popular among people who are messing with the images in this way. Oh my goodness.

Yeah. You think it’s a joke, but it’s really true.

[Alexx Stuart] (41:16 – 41:19)
I just kind of realized it wasn’t. Okay.

[Charles Piller] (41:20 – 43:12)
Yeah. Continue. And so once I went to those two steps, one is vetting Schrag’s image work to make sure that that was indeed correct and well and accurately done and analyzed.

And then going to subject matter experts to make sure that they agreed that not just were the doctored images there, but they were images that had a fundamental effect on the outcome of the experiment. In other words, you can’t believe the experiment because of the doctoring of these images. And so once I had that, I felt sure that the basis for this drug was really at the very best was deeply suspect.

And so for me, that was clear. Now, here is what is so troubling about the way in which this situation evolved. The FDA had all this information as well.

That’s the US Food and Drug Administration, the authority that was responsible for approving the use of this drug in clinical experiments, experiments with people. And they had all the same information. They had all the scientific evidence showing that there was a strong basis for believing that these experiments were fraudulent.

And the funder of a lot of this work, the National Institutes of Health, the US agency that funds a lot of biomedical research, they also had all of this information. But years went by without either of those agency taking any action. They took no action to step in and question and challenge the experiments.

The company just continued to present information that appeared to make the drugs look very successful and very promising in their early clinical experiments and made enormous amounts of money in the process.

[Alexx Stuart] (43:14 – 43:27)
Wow. So is part of where this has broken down, the NIH not doing their due diligence to check that the science was correct?

[Charles Piller] (43:28 – 43:55)
I would say both agencies, the Food and Drug Administration and the NIH, both fell down in their responsibilities. Now, personally, I think that these are both agencies that have been incredibly important in US drug development and global drug development. NIH is the main largest funder of basic research associated with Alzheimer’s research in the world.

[Alexx Stuart] (43:56 – 44:26)
But wouldn’t that be then important that this agency and the FDA be squeaky clean and be shown to not possibly be able to have anyone working there that would benefit in any way personally or share portfolio-wise from information going one way or the other on these sorts of medications?

[Charles Piller] (44:27 – 44:41)
Yeah, that is very important. They do check for financial conflicts somewhat carefully. It’s complicated.

I’ve done a lot of reporting on that as well.

[Alexx Stuart] (44:41 – 45:10)
I don’t want to come across as taking a default suspicious line, but we do know that there have been revolving doors where people leave industry, join government, leave government, join industry. For me, that’s part of one of the credibility issues that has allowed for the proliferation of almost a darker side of suspicion where then lies can be told about good research as well.

[Charles Piller] (45:11 – 50:25)
I couldn’t agree with you more, Alex. That is a really serious problem in drug development and in drug regulation. Now, my perspective on FDA and NIH is that these institutions are so vitally important to both research and drug development that we have to do whatever we can to make them better, not to tear them down.

Right now, there is a kind of movement in the United States, particularly with the incoming Trump administration, to some people who are in his orbit believe that what might be the way to do is to kind of, in a sense, so quote, unquote, clean house in these agencies and completely kind of tear apart certain aspects of their work. Personally, I think that would be a huge mistake because there’s so much value there. That said, we can’t let them off the hook.

I mean, if they do not get criticism and urging of reform from people who are very supportive of their overall role and the importance of their job in our society, then they’re going to get torn down by people who are trying to just tear them down for other reasons. Consequently, I think it’s incumbent on the NIH and the FDA to simply do a better job, to be less complacent. Let me give you an example.

So this is a pretty shocking example. It’s one that I talk about in some detail in the book, and I’ve written about in the pages of Science Magazine. It involves a guy who, until quite recently, was the head of the neuroscience section of the National Institute on Aging.

Now, that is one of the sub-agencies within the NIH. The NIH is the National Institutes of Health. It’s one of the institutes.

In that job, he was arguably the most important person in setting the agenda for how Alzheimer’s research would be oriented, what kinds of things would get funded, what kinds of things, what directions the field would take in the country and maybe even in the world. He was certainly among the most important. This is a guy who had an illustrious past of research, 800 papers.

His work was one of the most influential of anyone in the field. He was judging best by the measure of citations in the scholarly literature on many important subjects in both Alzheimer’s and Parkinson’s diseases. His work was the most highly cited of any scientist in the world for many years.

And his name? His name is Eliezer Mosley. Dr. Mosley was selected for this very important programmatic post within the National Institute on Aging, the post of heading up their neuroscience division because of his illustrious work, because of his great reputation in the field, because of his prolific research. Now, the investigation that I did of Mosley that was part of the book and was also published in Science has to do with Mosley’s apparent practice of image doctoring in his work going back more than 25 years. Oh my gosh. And it was the case that was the most shocking.

The image analysts with whom I worked, who looked at hundreds of his studies, found 132 studies that were tainted by apparent image doctoring. And these were some of them very influential studies in the field of both Parkinson’s and Alzheimer’s disease. And so this is the guy who was placed at the pinnacle of authority and the pinnacle of judgment associated with Alzheimer’s at a time when Congress in the United States had devoted many more billions of dollars to the disease than it ever had done in the past.

And what he himself was calling a golden age of Alzheimer’s research. So you had this guy who we found to be engaging in just flagrant apparent image doctoring in his work for many years. So to me, this captured the complacency of this agency in a way that you could never even imagine could have been that bad.

Now, even worse, I went to the agency and I said, do you vet any of your high-level hires for the possibility that they have misconduct in their past before you hire them? And do you think the possibility of image doctoring is something that you should be looking at in these high-level officials? And their answer was, not only did they never do that, but they didn’t think it was going to be beneficial.

[Alexx Stuart] (50:25 – 50:29)
Now, to me, There’s a human resources red flag.

[Charles Piller] (50:29 – 50:48)
Wow. It’s utterly bizarre. And I think it reflects a kind of complacency and arrogance that is beyond acceptable, you know, beyond acceptable for people like citizens, taxpayers, people in the world who are depending on these agencies.

[Alexx Stuart] (50:48 – 51:21)
And for the families, I mean, the father and son story at the start of your book, I mean, those people came to life for me. I felt like I was reading the Alzheimer’s version of Dark Waters. You know, it’s like really, you know, I’m just getting goosebumps now thinking my last time on the phone with my grandmother and, you know, just the many stories of friends.

These are the people that come to my mind that make me literally want to cry when I then hear this.

[Charles Piller] (51:23 – 52:06)
Yeah, I would just say, Alex, it can be very discouraging to dive into these issues. And what you have had historically is failures by these major federal institutions, failures by universities to adequately police their own professors, inadequately investigate when problems associated with misconduct have arisen, and failures by scholarly journals to adequately look at papers that might have fraudulent information and to pre-vet them so they didn’t pollute the scientific literature.

So these are all really bad problems. But I don’t want people to think that that reading this book is purely doom and gloom.

[Alexx Stuart] (52:06 – 53:35)
No, it’s definitely not. I also want to, I also want to say that because I think you, you’re bringing this to light because we need to actually recalibrate the entire body of research that’s done on the topic. I love that you mentioned lifestyle intervention as well.

I’ve had Dr. Dale Bredesen on the show a couple of times, whose work has been seminal around prevention and management of symptoms through lifestyle discoveries and support. So, and you do actually spend the later chapters of the book talking about, well, what now, where now, and what are the positives and what can we do? So yes, I, it’s just that I think if, if we truly understand how poorly certain agencies have looked after certain topics because of holes in the way they do everything from hire to monitor to fact check themselves, that we need to know that as fact while also not assuming that everyone is bad.

I don’t want us to become blanket skeptics because I think that’s also harmful to both the human spirit and to the great scientists who are doing work purely earnestly for the benefit of humans experiencing awful health conditions.

[Charles Piller] (53:36 – 54:10)
Absolutely. And I couldn’t agree with you more, Alex. And I want to say that this is something I think about every day because my work has had some impact on the field and it has sometimes been misused by ill-informed commentators who have suggested that because some Alzheimer’s research was faked, then no Alzheimer’s research is trustworthy, or even by extension that no scientific research is trustworthy.

This is utter foolishness, utter foolishness.

[Alexx Stuart] (54:11 – 54:55)
But how do we rebuild the trust in a media culture that sort of does headline education at best half the time and, and isn’t willing to actually spend hours on long form journalism anymore? I think for me, that is one of the most heartbreaking aspects here is people develop suspicion, but then don’t do the work to look at the entire picture and go deep before calibrating their suspicion to the appropriate percentage of suspicion that is worthy versus being blanket suspicious. Does that, am I, I don’t want it to sound waffly, but I think I got it across.

[Charles Piller] (54:55 – 55:58)
I think you did. And I think my answer to that is that I believe strongly in speaking to all kinds of people about this. And so just like I’m talking to you and you have a complex, nuanced understanding of this subject, because I know from your background in the podcasts that you do, that you’ve encountered the complexities of a lot of these health issues.

And what I try to do is to reach people where they are a bit. And that means even talking to people that might have ideas about maybe the government or about scientists that are quite contrary to what my own beliefs are, but to help them see the different perspective by not just assuming the worst and to reach people where they are. So I’m going to try to get this word out to a wide range of audiences, to people who might be predisposed to think that we should just destroy all these agencies.

[Alexx Stuart] (55:59 – 56:01)
It’s all crap and nothing’s right. And yeah.

[Charles Piller] (56:02 – 57:17)
And I got to say that to me, one of the things that made me so proud to be involved in telling some of these stories has to do with some of the courageous scientists who I’ve met along the way. Of course, the person who is a central character in my book, Matthew Schrag from Vanderbilt University, he’s an example of someone who has a great deal of integrity himself, who does research in the field and whose work I think is of possible future importance in attacking the root causes of Alzheimer’s disease. And he, his belief, and I think one that a lot of scientists increasingly share is we’ve got to do something to clean up these problems, to go at this in a way with a love of the kinds of portions of this world that are really truly beneficial and helpful.

And with a deep determination to make them better and more effective and to support the people whose objectives are honest and well developed. And that is the whole point here is to make the research go faster and better, not to tear it down.

[Alexx Stuart] (57:18 – 57:48)
Yeah. And do you feel like in the years that you’ve spent unravelling this tale and focusing in on this drug and that agency heads, not so great past in the end, that the entire Alzheimer’s research movement was based on for way too long. Do you feel like in that you have seen any change, shifts, hope start to appear?

[Charles Piller] (57:49 – 1:00:15)
Yeah, I do think so. I think I’ll answer this question in two ways. One is related to the dominant way of looking at Alzheimer’s, the so-called amyloid hypothesis that I mentioned earlier in the podcast.

This has been such an overwhelmingly dominant idea in the field that it has to a large degree crowded out opportunities for other kinds of research of other promising ideas. And I don’t mean that no other excellent research has been done. Some has been, but a lot of it has been starved for funds, meaning that it’s been starved for progress.

And I think to a small degree, that’s beginning to change. There are other ideas like having to do with possible infectious agents causing Alzheimer’s disease and a variety of other thoughts, including inflammation, other causes of inflammation that could result in dementia that are being studied in a careful way. For example, another idea that I think your listeners of the low-tox world might find of great interest is Dr. Schrag’s work at Vanderbilt has partly to do with these structures within the brain called lysosomes, which are kind of the, you might call them the garbage collectors of the brain. They help process waste products that are coming out of neurons and that remove them, sort of degrade them in a way so that they’re no longer toxic. And he thinks that dementia, including Alzheimer’s and possibly other kinds of dementia might have an origin associated with lysosomes. So it might be a function of making the lysosomes operate better and faster and more effectively.

So I’m just saying these as examples. We don’t know what the solution to Alzheimer’s is, but what we do know is that the overwhelming dominance of the amyloid hypothesis, while it’s still there and it’s still, in my view, a problem in the field, it’s not the only thing that’s going on. There’s lots of other ideas that are beginning to percolate.

So that’s one thing. The overarching issue of falsification of research.

[Alexx Stuart] (1:00:16 – 1:00:19)
Yes, I wanted to come back to that as well. How do we fix that?

[Charles Piller] (1:00:19 – 1:03:14)
Well, you know, like so many things these days, given the way in which the internet operates, part of the reason why this has been a problem that’s been so hard to solve for so long is that one is that people didn’t have access to the higher resolution images that would enable a person who’s skeptical of an experiment to look closely what was done. And it’s very, very important to have reasonably high resolution images. In other words, images that are sharp enough to see the details and to understand whether something might have been inappropriately doctored in that image.

So that’s step one. And because of the ubiquitous online presence of all these journals and all their images, it’s much easier to do that today than it was years ago. So that’s step one.

Step two is that there has been a proliferation of what are these so-called image sleuths. And these are sometimes technically astute people, people who are perhaps scientifically trained, but not always. Sometimes people who are just technically smart and curious and adept and skeptical who might be looking at images and have the skill to examine them closely and to examine the details in these images in a way that doesn’t require them to be the greatest expert in Alzheimer’s disease, but just requires them to be able to use their own eyes and some online tools to be able to distinguish between faked images and real images. And because this has become a kind of a crowdsourced issue, you now have a website in particular called PubPeer that some listeners may have heard of, which is a place where these studies are discussed and questions are posed by people who examine them and say, we’re seeing something in this image that doesn’t look right.

Can the authors of the study take a look at it and respond to the questions? And it’s become a forum for bringing out possible problems and also clarifying when perceived problems are actually just fine. They’re just artifacts that the questioner didn’t understand.

And so these are all ways that the process of examining research has accelerated. So you have both the acceleration of research examination and you have the beginning of proliferation of other types of research beyond the emblem hypothesis that I think are both enriching the field and helping police the field in a way that was less possible in years past.

[Alexx Stuart] (1:03:14 – 1:03:46)
Yeah, fantastic. Thank you for that hopefulness on the technical front. And just as I was doing my research before our chat today, I saw that eight days ago, a phase three trial of the drug that you feature in your book has not come up with any goods that anyone could find to warrant its wide distribution.

And I thought that was timely. Did that make your book or was it too late?

[Charles Piller] (1:03:46 – 1:05:48)
I’m afraid it was just barely too late, but obviously that’s an incredibly important development. So the drug you’re talking about is semiphalum from cassava sciences. And so I mentioned earlier in the podcast that from the very beginning, from the basic laboratory studies that looked phony to so many scientists proceeding through the clinical trials, the human experiments that looked as if they were based on fraudulent experimentation.

And from the financial manipulations that resulted in a $40 million fine from the federal government to this company, the indictment of one of its key scientists for alleged fraud in his science associated with this company and their drug. All of those things had for years been having people say, FDA, you’ve got to stop this. You’ve got to stop this experiment.

It doesn’t make any sense. It’s exploiting the people who are enrolled in the clinical trial, thousands of people taking this drug that doesn’t seem to have any hope of success. And the company kept protesting and saying that their drug was really well-founded and it was going to be a great success.

And so, as you mentioned, a few days ago, it was learned that their phase three clinical trial failed. In other words, the final, theoretically, one of the final steps before possible approval for marketing to patients, it failed utterly and the drug is basically dead in the water now. So you see that these critics from the outset were correct in their assumptions.

And yet, over the course of this period, a lot of patients were taking the drug. A lot of money was made by a lot of people. And it’s a tragic, tragic story, but one that I have to say, finally has come to its logical conclusion.

[Alexx Stuart] (1:05:51 – 1:06:46)
And this is another reason why I think there is a swell of mistrust from people in science and why trust the science hashtag that was, of course, popularized as a sarcastic hashtag during the COVID times has really taken root in a lot of people’s beliefs that we just can’t trust any science anymore. And because time and again now we’ve seen companies benefit, make tons of profit, then we find out afterwards it’s harmful. And that during trials, there were signs that it could be harmful or simply ineffective and cause unfounded hope for millions of people.

And it’s happened with this drug. So do you have a sense of hope around that changing anytime soon in medical research?

[Charles Piller] (1:06:47 – 1:10:31)
I do. I mean, I want to say that medical research has been one of the greatest gifts to humankind ever. It has extended our lifespans, made life better for so many people, cured many dread diseases.

And the on balance has been an enormously effective, helpful way of operating. The problems with medical research, including the ones that I’ve talked about in my book, these are serious problems. And they mean that things go more slowly than they should, or people are exploited in certain ways.

What people need to do is demand better and can demand better without deciding that we have to burn the whole house down. And so I wanted to mention briefly two things. One is there’s a Chem-B, one’s called Kinsula.

And these are drugs that are so-called anti-amyloid antibody drugs. They are designed to attack amyloids in your brain. And they have been described as causing a very, very minor slowing of cognitive decline in Alzheimer’s patients who have taken them.

However, they come with very serious risks of death even and potential brain damage from swelling and bleeding caused by the drugs. So they’ve been approved. And you might think to yourself, well, maybe these risks really are worthwhile to take these risks because of the benefits.

And that’s every patient has to make that decision with their doctor. But the issue really is that what is the benefit from these drugs? And many neuroscientists and neurologists who treat patients with Alzheimer’s disease have said that the benefits have been so subtle and so small that they might be imperceptible to patients, family members, and doctors.

And so for so minor a potential benefit, many health agencies, including Australia’s, have refused to allow those drugs to be marketed in their countries. Some like the United States have approved drugs, but the uptake of them has been slow because of the hazards and the cost. There are tens of thousands of dollars per patient per year.

So this is an example of something where the drug process worked in a sense in an effective way in the way that it’s designed to work, but you still end up with a very discouraging outcome. I think that that’s going to get better over time. As more creativity is injected into possibilities for Alzheimer’s research and as new knowledge is gained, there will eventually be better drug candidates.

So I don’t think it’s all doom and gloom. I do think that in the meantime, patients who have Alzheimer’s or who are concerned about possibly getting Alzheimer’s in the future can help themselves by engaging in healthy lifestyle habits, in concentrating on other elements of their health. If they have obesity or high blood pressure or cholesterol problems, these all can be risk factors for dementia later in life.

Treat your illnesses that you can and take seriously the importance of fitness and healthy eating habits and all the things that I think you and your listeners believe are very important. They are important for Alzheimer’s as well.

[Alexx Stuart] (1:10:31 – 1:12:16)
I mean, one of the other things that’s so important is the environmental toxin piece, whether it be chemicals that different trades are using in their jobs that has been found to be a potential risk factor. I myself have been a long time up and down sufferer of mold illness and the neuroinflammation and neurotoxicity that certain species of mold. I now know if I see that one on the report yet that matches my symptoms where I forget words and I drop things and I thought I had a terminal illness.

I just needed a clean building and some antifungal medication. We’re learning some really interesting things about environmental factors and neurodegeneration, including Alzheimer’s, which I find, yes, it’s scary, but it’s also excellent because we know more now. And how do we design better?

How do we maintain better? How do we wear better PPE if we work in certain trades? You know, you see tradies.

I see these young men walking around when they come and do things on houses. One of them came down from a roof once in a place I lived and he was just had a sheet of lead under his naked arm. And I was like, dude, do you realize how neurotoxic lead is?

He’s like, oh, yeah, she’ll be right, mate, walked off. And I just think there’s a whole world of things that make our biology strained. And then there can be those genetic factors that then show us the report card on that strain in different ways.

One being neurodegeneration. Yeah, absolutely. Yeah, I think it’s a huge part of it.

Agree.

[Charles Piller] (1:12:17 – 1:12:27)
Your point is very well taken. I mean, I think we need to be thoughtful, open minded, and both skeptical and respectful of people.

[Alexx Stuart] (1:12:27 – 1:12:33)
Skeptical and respectful. I love those two words together, Charles. They’re not together enough.

[Charles Piller] (1:12:33 – 1:14:11)
I couldn’t agree more. And I want to maybe leave people with a message that I think some people might feel intimidated reading about complex scientific subjects. And look, I write, I’m a journalist, I write for a general audience, but I do work for one of the top scholarly journals in the world.

And consequently, you know, some people might think, oh, well, this material is too complex for me. Or they might think that they need some kind of advanced degree to understand everything. What I’ve tried to do in the book is to tell the story of problems in the field and hope in the field, through the eyes and through the stories of individuals who have lived through this, both the people on both sides of the equation, the heroic people who have uncovered and rooted out these problems, and people who maybe are just human beings who went astray and needed a course correction in their lives, and maybe did terrible things that need to be greeted with both concern, but also to some degree with understanding and hopefulness. And I think what I’ve tried to do is tell this story in a narrative that is filled with scientific information, yes, but also approachable by anyone.

You have the right to understand these issues well. And it’s our responsibility as journalists to convey them in a way that’s accessible. And that’s what I’ve tried to do.

[Alexx Stuart] (1:14:12 – 1:16:09)
I think you’ve done a great job. I didn’t feel at any point that I couldn’t get a handle on it. And yes, some people may say I have a head start having interviewed over 400 doctors and journalists and scientists in my time.

I get that. But it’s storytelling. It’s not reading a science journal.

That’s definitely what I felt as a reader. And yeah, I think it’s so important that we read books like this to deeply understand issues and the spectrum, and to understand that we have a system that sets people up to do the wrong thing, because of a multitude of pressures. Now, and a system that like maybe people listening could relate to.

I’m so busy. So I’m always buying the takeaway and not worrying about the vegetable oils or the fact that it’s not organic or the fact that so the system has made you so busy because you need the double working mortgage three job type situation. That means you just don’t do the best job at certain things that would be optimally done a different way.

And I think the system is pressuring science in quite a similar way, the more I think about it. And systemic change is so important. And I sometimes wish I could say to people who are just blanket skeptical these days, is get off social media and go talk to your local representative about reversing Citizens United.

That’s going to be a far more important act to clean up the system that you hate. But people don’t know so much and don’t have historical context of how we got here. They just jump in at a particular time where a particular issue becomes important to them on a very personal level.

And then it becomes really understandable why they then become blanket skeptics.

[Charles Piller] (1:16:10 – 1:16:31)
So, you know, I agree completely with you, Alex. I think those are very wise words. And again, I see my responsibility as meeting people where they are.

Yes. And trying to trying to be helpful in the way that I can be to refute wrong information and to help people understand the complexity of some of these issues.

[Alexx Stuart] (1:16:32 – 1:16:49)
And can I ask you a personal question to finish, Charles? How do you let it go? How do you just then come home and have a nice meal, catch up with friends?

Can it sometimes consume you to do this work where you find it difficult to let go?

[Charles Piller] (1:16:50 – 1:17:19)
I have to admit that it can be all consuming and it’s very hard to let it go. In order to do this sort of thing successfully, you have to be a little obsessive. So I concede to being a little obsessive.

But I also value the importance of letting down and taking a real break and unplugging. And I’m planning to take a vacation soon and looking forward to kind of being able to refresh in that way.

[Alexx Stuart] (1:17:19 – 1:20:32)
Nice. Well, I love that for you. I think you deserve it after this incredible body of work.

And I appreciate your work. I look forward to seeing the book out in the world. And I think everyone should read it.

Thanks for joining me, Charles. Thank you, Alex. I hope you loved today’s show as much as I loved bringing it to you.

I want to remind you that if you are someone who craves a low-tox community that is judgment-free, full of empowerment, has health professionals and building health professionals that can support you as well as me in there answering questions multiple times a week, I want to invite you to join the Low Tox Club. For the price of less than a cup of coffee a month, you have an annual membership for $49 Australian. So it’s about $30 US or Euro that allows you to have a member masterclass every single month with a health professional or global expert from the podcast where we have them to ourselves for an hour to ask questions and deep dive further.

You have the beautiful supportive chat group. You have Q&As with me, me answering questions. We read books and talk about them and a whole bunch more.

You can head to lowtoxlife.com, hit the explore tab and join the club is the very first option on that list. Of course, we have over 10 evergreen courses that you can jump into anytime, whether it’s navigating everyday low-tox swaps with our Go Low Tox signature course, whether you have kids and you’re wanting to know how to best support them with our low-tox kids course, whether you’re planning a family and looking at a healthy low-tox preconception journey, reducing inflammation, especially the chronic kind without inflammation ninja course, many, many other courses. You can again, head to lowtoxlife.com, hit the courses tab and you’ll see all of the options, which includes a business course, my low-tox method program. A lot of people don’t know, but I was doing a lot before starting low-tox life in 2009.

And I was a business consultant across hospitality, health, retail and cosmetics. I have been in business consulting for a very long time. So I absolutely adore helping people move into the low-tox space or develop their low-tox businesses.

So that’s a way I can support you. And then of course, there’s our wonderful social media communities at lowtoxlife on Instagram. And of course the website with over 250 gluten-free recipes, blogs, downloadable PDFs to help you navigate wanting to get rid of synthetic fragrances in your school or office.

I could go on. So head to lowtoxlife.com, see what takes your interest or fancy. And thank you so much for being a part of our podcast community.

I love, love, love reading your reviews. I appreciate every follow and subscribe. And I want to just remind you to finish off that if there’s anything you heard that you found interesting from a medical or scientific perspective, it is intended as education only.

Please always chat to a health professional who knows you and your situation best. I’ll see you next week. Bye.

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