Death by Wellness Influencers: Paloma Shemirani

In this episode of "The Present Illness," hosts Arghavan Salles and Alyssa Burgart delve into the tragic story of Paloma Shemirani, a young woman whose life was cut short by misinformation and a lack of standard medical intervention. Despite being diagnosed with a treatable form of non-Hodgkin's lymphoma, Paloma's journey was marred by her mother's influence and a series of misguided decisions that led her away from life-saving treatment. The episode explores the broader implications of medical misinformation, the role of wellness influencers, and the emotional toll on healthcare providers. Join us as we unpack this complex narrative and discuss the urgent need for accurate medical information in today's digital age.

• The dangerous impact of misinformation on medical decisions.
• The emotional burden on healthcare providers navigating misinformation.
• The role of social media in spreading misinformation. (It doesn't have to be this way!)

What's bringing us joy this week?

• Hidden Talent on TikTok

Resources:

BBC Sussex overview of Paloma’s case (Instagram)

Official inquest: Inquest touching the Death of Paloma Shemirani

Cancer Research UK's detailed description of “Gerson therapy”

Anti-vaccine strategy: The narrative around Daisy Hildebrand’s death (the second child to die in the 2025 Texas measles outbreak) was complicated by anti-vaccine influencers like Robert Malone and the Children’s Health Defense (America’s largest anti-vaccine non-profit)

Entrepreneur Media: The Wellness Industry Is Now Richer Than Big Pharma and Sports

Graphic from Nini Munoz showing Big Wellness at $6.3 trillion and the global vaccine market at only in the billions at $78.5 billion.

The Role of Trauma in Mothers’ COVID-19 Vaccine Beliefs and Intentions, Journal of Pediatric Psychology, Volume 46, Issue 5, June 2021, Pages 526–535, https://doi.org/10.1093/jpepsy/jsab043 (no paywall) - - Key takeaway from this paper: Mothers with a PTSD history showed lower confidence and intent to get COVID-19 vaccines for themselves and their children, largely due to higher institutional distrust, suggesting the need for trauma-informed, trust-building vaccine messaging.

Note: the deceased's father, Dr. Faramarz Shemirani, PhD, MSc, BSc, is not a medical doctor. According to their son, Gabriel, he inspired Kate Shemirani's interest in conspiracy theories.

Thanks for listening to The Present Illness with Drs. Arghavan Salles and Alyssa Burgart!

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Credits

• Production by Arghavan Salles and Alyssa Burgart
• Editing by Alyssa Burgart
• Theme Music by Joseph Uphoff
• Social Media by Arghavan Salles

Chapters

• 0:51 The Tragic Case of Paloma Shamirani
• 7:17 Influence of Misinformation on Medical Decisions
• 12:18 Family Dynamics and Accountability in Healthcare
• 22:15 The Impact of Misinformation in Health
• 24:05 The Role of Influencers in Health Decisions
• 26:04 The Wellness Industry vs. Traditional Medicine
• 29:28 Social Media's Responsibility in Misinformation
• 32:13 The Emotional Burden of Healthcare Providers
• 34:28 Understanding Patient Beliefs and Mistrust
• 39:00 The Consequences of Misinformation
• 42:59 The Role of Emotion in Medical Decision Making
• 46:59 Reflections on Patient Care and Responsibility
• 49:55 What's bringing us joy this week?

Transcript

0:00

Hey there, fellow nerds! Welcome to another episode of The Present Illness, the podcast where two physicians try to make sense of a world that's a little febrile and definitely underdiagnosed. I'm Arghavan Sallas, a surgeon scientist in your friendly neighborhood doom scroller in residence. And I'm Alyssa Burgart an anesthesiologist and bioethicist who tracks news and health law cases like their EKGs, full of spikes and surprises, some of which might take us out if we don't pay attention. The Present Illness is where we dig into public health, politics, culture, and ethics with a laryngoscope in one hand and a meme in the other. Okay, I don't carry a laryngoscope, but I know that you do. Big thanks to everyone listening and everyone who's listened to the first couple of episodes and sent us your feedback. We really appreciate it. And a warm welcome to anyone who just stumbled in from the invasion of war-torn Portland. We're glad you're here. We hope you brought your kombucha. Let's get into it. That would be a very Portland thing to do or some coffee or some VooDoo Doughnuts. Okay, here's what I want to talk about today. This is an upsetting story. I just want to say that upfront. It's about a young woman named, good point, good point. It's about a young woman named Paloma Shemirani in the UK who passed away last year. She was 23 years old when she passed away. and she died of a type of cancer that is very treatable, has an 80 % success rate of being treated, and it's called non-Hodgkin's lymphoma. She was diagnosed in December of 2023 and was dead seven months later in July of 2024. And basically the real reason is that her mother convinced her not to pursue official, like, I say official, but standard of care medical treatment. And so she did not pursue chemotherapy, which is what would have given her a high likelihood of surviving. And she did not have repeated imaging over time to see how her disease was progressing. So she didn't know when it was getting worse. And her mom, what I think makes it a little bit harder to understand is that her mom was a nurse. And so she had a really solid background in healthcare. And actually she had been removed from being a nurse during the early part of the pandemic because she was, I guess she became a big kind of influencer and anti-medicine is what BBC called her an anti-medicine um activist in the time of the early parts of the COVID pandemic. So she was no longer practicing as a nurse, but she had credentials, she had education to the point that you would think she would have encouraged her daughter to pursue life-saving treatment. And unfortunately, that's not what happened. And so the reason this is on my mind now is that there was a formal inquest that was done in the UK to try to determine the causes of her death, not the medical cause, but what contributed to her not pursuing medical therapy. And the coroner in their report said that her mom influenced her to not pursue standard of care medical treatment. And part of the reason this is happening is that her brother, her twin brother, Gabriel, has been really trying to find some accountability for what happened to his sister. And he had even brought a court proceeding when Paloma was still alive to try to convince her to accept medical treatment. And I don't think that proceeding was ever completed because she ultimately passed away. you know, for folks who don't know what non-Hodgkin's lymphoma is, I'm not going to do a big explainer, but for her, Paloma, the way it presented for her was that she had a large mass in her chest. And it was already... Yeah, it was already impinging. It's in the media sign for people who are medical, but it was already affecting her blood vessels that were going to and from her heart. And so they were already starting to affect, likely, her blood flow. over time that mass because she wasn't treating it was growing and growing and growing. Well, and and this is maybe I don't know about your experience, but as an anesthesiologist we we have like really Detailed safety protocols for taking care of patients who have mediastinal masses which is the kind of proper term for for what we're talking about here and Because they're so dangerous that if we give too much just a teeny bit too much sedation and somebody for example stops breathing they can actually the mass can actually compress their ability to even get oxygen into their body. So we always try to take care of these folks once that mass can be made smaller, usually with things like chemotherapy like you're mentioning. And so, wow, it's such a dangerous, of all the places for tumor to grow, that is one of the places that as an airway doctor and as somebody who spends a lot of time managing a ventilator, that just gave me chills. Yeah, and you are right, because ultimately that's how she died, was the mass, not from anesthesia, but the mass had grown so much that it was impinging on her airway and she collapsed at her home, her mom's home. And her mom, for reasons that, all the things I've read is just really not clear, didn't call for an ambulance. She called a friend. And it was some period of time, over 30 minutes before, paramedics or really any emergency response folks. Well, I paramedics, sorry. I think there was an earlier emergency response person, but it was over 30 minutes till a paramedic was able to arrive. And I think from what I've read that the mom was trying to do some kind of CPR. I don't know that it was effective. The pulse ox reading that was reported in the coroner's report was 36. So for folks who, yeah, yeah, a normal. That's a not alive amount. Right. For normal folks like you and me right now, it should be over 92. We're both probably at least 95. I don't know. But anyway, it's the saturation of oxygen in your blood and she was at 36. And so that reflects. I was just gonna say it's a percentage. So like a hundred is the maximum. Um, so by the time you will also, the other thing is by the time you get down into the thirties, we know that the pulse oximeter is not as accurate when you get that low. So that's terrible. And I've, I'll be honest with you, I've had a case almost exactly like this. It was horrible. The patient survived, the patient survived because we were able to intervene earlier than this than in this case. but yeah, misinformation and people who, for whatever reason, do not believe in modern therapies for cancer in particular, we see very advanced diseases by the time we see them at all. Yeah, and what I think what's hard, there's a lot that's really devastating about this case. One being that she was so young, obviously, to being that her own mother was a healthcare professional. They refer to her father as doctor in the documents. It's not clear to me, like DR, I don't know if that person's a medical, I didn't see any information on that. It might be out there and I might've missed it. But so there may be a physician involved as well. I don't know. But what happened was, you know, she had, she had gone in for her original hospitalization when she was diagnosed with the lymphoma and apparently had indicated to the physician that she was going to think about chemotherapy. And then at that time she was estranged from her mother. But after she got her diagnosis, essentially she reunited with her mother, presumably because she wanted someone with health knowledge, right, to talk to and it was her mother. You know, I think that makes sense. And then... Not too long after that, all of a sudden she was vehemently opposed to chemotherapy and she actually was upset with the care she had received at that hospital. Her mother convinced her, well, somebody convinced her that they had treated her without her consent, even though that wasn't true. I mean, it was just a lot of the stuff that we hear about from wellness influencers about hospitals and doctors and they're evil and they're out to get you and that kind of stuff. So it seems like from the information that's available that the mom likely was planting these ideas in her head. And so she not only refused to go back to the hospital, not only refused the chemotherapy, but also refused any monitoring of how her disease was progressing. And the things that are in the coroner's report that I think are worth mentioning are one, that when it came to chemotherapy, she was concerned that it was going to affect her Fertility which this regimen does have an impact on fertility, but she was offered fertility preservation when she was in the hospital but two that she thought that Infertility could cause Cancer. I don't know why she thought that that's not really true to my knowledge in any way m and then three she thought the chemotherapy was going to kill her and so lot of people think that. Well, because chemotherapy is toxic. I mean, that's how it works. It is toxic to our cells and it's a matter of trying to carefully titrate the amount of toxicity to kill the tumor cells without killing the person. And I'm not here to say, go ahead. the other thing I was just going to add to that is that when the survival rates for, as you mentioned, for this particular cancer was around 80 % with therapy, I that means there's 20 % of people who die despite therapy. so I do think that it is a, especially when we are afraid and our decision-making is really indexed on fear. You know, it's not surprising for folks to end up with being very indexed on a particular outcome that may or may not be the most likely outcome. Mm-hmm, right. And it may or may not be the, not the death part, but like infertility, you know, if you're not alive, you're obviously not having children. So, and I'm not saying that to be crass, but like that's, I understand as someone who has had infertility and struggled with it, like I understand that that is terrible. And I wish that she were, I would prefer not even knowing her, that she were here in infertile than to not be here. The other thing that I think is, or at least another thing I think is worth mentioning is her concern about radiation because this has come up with other folks. So originally, apparently she had agreed to monitoring, even when she was gonna not have the chemotherapy is my understanding, but then she decided she did not wanna have any CT scans because she was concerned about the radiation. And, you know, folks may recall Ananda Lewis who was an MTV VJ who had breast cancer and did not have mammograms, screening mammograms, because she too was worried about radiation. And so I want to just say a quick word about radiation in that there is a risk associated with radiation for the development of cancer. It is usually not from a single imaging study or even a couple of imaging studies. And X-rays in particular have a much lower dose of radiation than, for example, a CT scan. And if you're 22 years old and you're concerned about radiation so that you're going to forego CT scans and then not pursue treatment for your cancer. So you're trying to, you're thinking about potentially risk of future cancer while ignoring the current cancer. And I'm not saying this in a judgmental way. I know she obviously did what she thought was best and right, but for other people who are in this situation to be concerned about a risk of future cancer, maybe 10, 20 years down the line. and to let that affect your decision making regarding your current cancer is really dangerous. Yeah. The other thing too is, you know, there's so many things that expose us to radiation. Like, you know, every time you get on an airplane, you're getting exposed to radiation. you know, not everybody flies, but like, you know, the sun exposes us to radiation. Like there, there are many other things that, that also contribute to our radiation exposure. There's also a lot of other things that contribute to our risk of developing cancer that are not, you know, part of what we're talking about here. Yes, and even so, think cancer from radiation is relatively rare compared to other causes. It doesn't mean it doesn't happen. It definitely is a real risk, but it's not like everyone who gets a CT scan is going to get cancer. So what I do want to highlight is what Paloma decided to do instead of pursuing her doctor's advice. Her family knew a person who had previously had a, I think it's pronounced Gerson Therapy Center in Mexico, I believe. And so she had contacted that person. And then she had a practitioner local in the UK who she worked with. for that therapy. So it's a uh therapy that is based on diet in many ways and diet modification and also coffee enemas. And even the person who was helping her had said to Paloma, apparently according to her testimony, that she did not think this was going to cure her cancer. Like she said that to Paloma apparently. But, you know, misinformation, when we want to believe it is really, really powerful. And I think we've talked about this briefly before that the reason or part of the reason this kind of misinformation is so powerful and effective is of course we would like to believe that if we just change our diet, we can cure our cancer. I mean, that would be amazing, right? If we could avoid chemotherapy and just change our diet and do some coffee enemas. who wouldn't do that? Like, I think most of us would be like, yes, sign me up. I don't wanna go through the toxicity, the nausea, the vomiting, the hair loss, everything that is associated with chemotherapy, the infertility, et cetera. But it just doesn't work. But so that's the main thing from what I read that she pursued was that therapy. And in the meantime, doctors, what's interesting to me as a physician is it seems like their system, obviously the healthcare system there is very different from the one here, but it seems like doctors really reached out to her multiple times to Paloma to check in with her, to try to build bridges, to try to at least get a CT scan to see how things were progressing. um And the way that it reads, at least to me in the coroner's report is that Paloma over this period of time, which was only seven months, went from someone who was maybe not sure what she wanted to do, but open to discussion to someone who was very closed off, actually. And the court proceedings that her brother had initiated, it sounds like that made her even more upset and maybe more entrenched in her position, which obviously was not his intent. He was trying to help and try to help her find a path to treatment because he didn't want to lose his sister. In the end, it's hard for me to understand, you know, if you're the mother and your child collapses at your home, why you don't immediately call for an ambulance. I don't know what was happening for those 30 plus minutes. What quality of, I mean, it could not have been really good CPR because of the pulse oximetry reading that we have. And yet, despite all of these things, go ahead. I would say that even, I mean, if with a large mediastinal mass, I that wasn't, I don't know that it would have mattered how fast you'd called at that point. Like unless you can get that person onto ECMO, so like, you know, heart and lung bypass machine to be able to oxygenate their blood, you know, it's pretty late in the game. Yeah, no, absolutely. Absolutely. And interesting, you I always try to understand what people are thinking, what their perspective is. And I often struggle, but I really do at least try. And, you know, the mom in the documents that I read from the coroner's report even still insists that the reason Paloma died was that she was given a specific medication in that initial hospitalization in December of 2023. and that there had been supposedly some other mismanagement of her, including I believe she was upset about how that last hospitalization after her collapse had happened because she was questioning their use of epinephrine, is commonly used medication when you're trying to resuscitate somebody. And she was convinced that that was, well, I don't know if she was convinced, but she said that she was convinced that that was. what led to Paloma's death. And I think you and I, not on this podcast, but otherwise have talked about how hard it is for folks who have contributed to a loss like this to recognize their own role in it. So psychologically, it makes sense that she would not be able to recognize what her responsibility is here. And by the way, to the coroner, the mom has repeatedly said that Paloma made all her own decisions. and that she as the mother was just there to support her. convenient. Isn't it? Well, the... And I don't mean that in a dismissive way. just mean that even if somebody's making their own decisions, if they're being encouraged to have certain beliefs, especially when someone is sick and there is a person who is helping to provide support, it's very typical to want that person to be happy and to want to be in alignment with that person. so it's not surprising. that that might be part of what contributed in this relational dynamic to these beliefs really becoming more entrenched. Yes, and the coroner's report in multiple places really communicates that the coroner does not believe many of the things that the mom is saying. I mean, the coroner's report is very professional, but as a reader, I'm like, you think she's just full of it because she's defending herself, right? So one of the potential outcomes of this inquest could have been a placement of responsibility for Paloma's death on the mother. And that is not what happened here. um But if you read the coroner's report, the... I mean, this person sounds very, very thoughtful at the corner because she writes that, yes, she does believe that the mom influenced Paloma to not pursue medical therapy and that this is ultimately why her disease progressed and then that's why she died. And she says, I think there were a number of factors involved here. Like this guy at the Gerson Therapy Center, what was he saying to her this whole time? What was the father saying this whole time? There was another person, Andrew somebody that they never got a hold of, but somehow was involved in their lives. You know, there's multiple people who were involved here. Yeah. Right. So that was basically the coroner's conclusion was I can't say that it was her fault, the mom's fault specifically. because there were so many people involved here, but I can say that the mom heavily influenced Paloma's decision making. Sure. Gosh, what a terrible story. I'm so sorry to hear about that. also, like, I feel terrible. mean, I don't, obviously I don't know any of these people. But you know, in my work at a children's hospital, I meet a lot of parents whose children die. And it is not, that is not the way the world is supposed to be. Like, if we lived in a just world, like, all children would outlive their parents. And that is just simply not the case. You and I have spoken previously about how all of us have, you we all have egos and we're interested in, you know, protecting our sense of self and our sense of who we are and who we want to be. And I can only imagine what it must be like to be the people who were closest to Paloma reflecting on how did they get there and you know, obviously some individuals are going to be are going to have the capacity to reflect in deeper ways than others. And that's, that I think also adds this, can, I'm thinking right now of her brother, and how hard it must be, you know, it's really challenging when you have that kind of strife within a family. And because she died, you know, that's a, it's hard to imagine that being a repairable aspect of their life in their family. Yeah, and it does sound like there was previous to all this, a lot of, there were a lot of challenging dynamics, it sounds like in the family prior to all this, which there are in many, families. It also, this situation reminds me also of the parents of one of the children who died in Texas with the measles outbreak, that when they were interviewed, you know, they still after their child had died. They still were firm in their belief that not vaccinating was the right choice. And I think a lot of people, I think a natural reaction to that is to be surprised. Like, how could you say that when your child is now dead because of the choice that you made? And yet, because of exactly what you were just saying, it is very hard. It takes a special kind of person to be able to acknowledge their role in something so catastrophic. It is much more desirable and therefore much more likely to happen for us humans to convince ourselves that we did the right thing and this was an outcome that was beyond our control. That is much easier than to accept that we may have contributed to harm to someone we loved dearly. You know, and the other thing I'll say about this doesn't have to do with this UK case, but Daisy is the name of the patient that you're referencing in the Texas measles outbreak. You know, her family also in the immediate aftermath of her death was surrounded by support from people from Children's Health Defense, which is the organization that RFK Jr took over and is part of his like whole rise. to fame as a vaccine questioner, vaccine hesitancy, fear-mongering person. And it was very interesting to watch that happen in real time to see the propaganda that was coming out supporting an anti-vaccine position. So they really very strategically made that family feel loved and supported and cared for in that decision not to vaccinate, which is very typical in their community. These are not the only parents to not vaccinate their kids in that area. That's why there's such a massive outbreak. And it also demonstrates how for folks who have these beliefs, there are also these forces that are very, very keyed in to maintaining that sense of disbelief against medical care, against medical therapies. There's a huge money-making system that, you know, certainly wellness influencers are capitalizing on and organizations like Children's Health Defense and organizations, uh you know, related to various anti-medicine beliefs. yeah, mean, there's also a lot of money in telling people to turn against medicine because you can sell them all these other things like these Gerson therapies and supplements and so on that we've talked about before. But that's why I wanted to talk about this sad story with Paloma because it ties into so much of what we're seeing now, not just with wellness influencers, although yes, with wellness influencers, but also with RFK Jr. himself. um And that was actually pointed out very clearly in the essay that the six former surgeons general published in the Washington Post earlier this week, where they very directly talked about how instead of combating health related misinformation, RFK Jr. is amplifying it. And instead of sharing, yeah. Yes, did you see? Okay, so let's side note. He was in a meeting, I think it was today, where he talked about a fetus being in a placenta. He was like, when you shouldn't take Tylenol when you've got a fetus in your placenta. And just for context, fetuses do not belong inside of placentas. Just to be clear, is anatomically, that is actually very bad for a fetus. have a big problem if you've got a fetus in your embedded inside your placenta. Anyway, so he's, but. you know I mean listen we talked in a previous episode about how you know we could totally have him go through the Responsible Conduct of Research course I'm you know maybe he wants some anatomy lessons maybe he wants to go to medical school we should enroll him tuition free just let's enroll him I think we should because you know what else he said? He said that, sorry, this is a little bit, we'll get back to Well, it's influences in a second, but he also said that we don't have the evidence yet to prove that Tylenol causes autism, but we're going to make the evidence. We're going to make the evidence to give us the proof. And somebody in my comments had said, He's just saying it out like we all knew that he was gonna do that, but he's just saying it out loud And I said yeah, because he doesn't know how research works like he thinks it's fine He doesn't care how research works. I think. Yeah. Anyway. also true. And the reason it's not like a red flag to him to say that is he thinks that's a totally appropriate way to do research, to have a preconceived conclusion and then figure out a way to find data that supports that conclusion. He thinks that that is science, which just to be clear is not how science works. Well, and I think that this is, it is so, even though this might feel like a departure, I mean, it's so relevant to this conversation we're having about this young woman who denied, you know, did not want to receive standard therapies that would be effective for this specific type of cancer that she had. Because there are people like RFK, he's not the only one. And Again, it is big business. It's always really interesting to me as well to hear, know, a lot of the anti chemotherapy, know, chemotherapy is toxic crowd like to say, well, you know, pharma is just trying to make a ton of money off of cancer drugs. It's not incorrect. Pharmaceutical companies are absolutely, their businesses. live in a capitalist society where that is what businesses do. And big wellness makes a boatload of money off of getting people to not use traditional therapies. And I'm so struck by how often that seems to be, you know, like not part of the conversation. Yeah, I mean, there's a slide. Multiple people have shared this slide and I don't remember the numbers off the top of my head. So I apologize for that. Like the pharmaceutical industry is however many billion dollars and then the wellness industry is however many trillion dollars. Like there's they're not even on the same level in terms of the amount of money that's being made. And pharmaceutical companies, neither of us are a big fan, but they do have to go through at least some. approval processes and so on and you don't have to do that for supplements. So there's a big difference in how much they can manipulate people and how much harm can be caused. And I will tell you, this is another thing that people, I recommend people keep an eye out for is because Jim O'Neill, who is currently running the CDC, is a big time libertarian. He does not believe that the FDA should do anything to regulate whether or not medications are effective. He thinks that the idea that the FDA requires things to be both safe and effective is inappropriately delaying Americans access to whatever they want. this is an extension of the whole Right to Try movement, which is again this idea that why should you have to wait for a drug to be approved? You should be able to just try whatever you want, which is a dangerous and very costly thing to do because then it also means that people are not necessarily getting access to things that we know are effective. So there is a huge movement you know, especially from folks who are really interested in as laissez faire of a government system as possible to really turn regular pharmaceutical drugs into more like supplements in terms of the kind of regulation that they face. And I think this is profoundly dangerous and it's going to really compound stories like this where we have patients who are like, well, I'm just going to do this other thing where there's no evidence that it works. Yeah, well, I think that's a great point because that Gerson therapy is a great example of something, you know, I don't know the details of what specific diet she was on, but presumably it was a healthy diet is not going to cause her harm. So it could be considered in this kind of categorization safe, but not effective. And what that did was prevent her from seeking actual effective treatment. And ultimately she passed away. And I think, you know, there's all these RFK is really at the apex of it. RFK Junior is at the apex of it. But there's all these influencers online telling people, as we've talked about before, to not have chemotherapy, to not get a colonoscopy, to not get a mammogram. And I think it's really important to share stories like Paloma's say this is what happens. Because some people will say, that's just harmless. It's just people making videos, you know, and we have freedom of speech. Well, of course we have freedom of speech. Although... our president yesterday said we don't really, but anyway, uh putting that aside, minor detail, but for these influencers, people will say like, well, they have a right to say these things and they do have a right to say those things and they're contributing to a lot of harm for people who they will probably never see and never meet and for the harm they will never be held accountable for. Well, and you and I obviously were constantly doom scrolling and we're out in the channels, we're out in the media, and the attention economy wants people to stay on these videos. when you, our brains are attuned to things that sound different and new, we love something that we've never seen before. And so the algorithm... The algorithms are trained to keep our attention on these things irrespective of what harm they may cause. This actually does not have to be like this. These algorithms can be trained to stop promoting this type of disinformation and misinformation. And we saw, you know, groups like Facebook try to do some of that during COVID-19. The reality is, you know, there, has to be a commitment to prevent this kind of harm. But I don't know, I'm not seeing it. I'm not seeing it in these companies. seeing it, think all these platforms to my knowledge have backed off of any responsibility for that. I think you're absolutely right that there had been at some point an attempt at content moderation in that way. And now, I I guess I shouldn't say that backed off completely. Now they're doing this community notes thing, which is not an effective way of fact checking. But that's what both Instagram and Twitter are doing now as... Proxy for content moderation, but I 100 % agree with you There is no reason that these platforms should push these videos the way they do or even allow them to be there I mean, these are choices that are made freedom of speech doesn't mean freedom of access to every platform that exists, right? And that's why if folks remember Certain people were banned from Twitter And it wasn't because they can't say the things that they want to say, it's that there was a choice made by the leadership at Twitter that they were not going to say it on that platform. Because these are actually private spaces. Like people don't think of them that way, but they are actually companies and companies actually can refuse to serve certain people. But the problem also is that, you know, on these social media platforms and I, I mean, listen, this young woman who died was 22 years old when she got diagnosed, 23 when she died, like she's probably online, right? Like, I mean, there's, it'd be highly unlikely for her to be living under a rock with no phone. But the reality is that as users of these platforms, we are not the customers, folks. Like the advertisers are the customers. You are the product. Your attention is the product. And that is where, you know, for influencers who are making this, you know, anti-science, anti-medicine materials, they are driving your attention and it's leading to harm. Yeah, and I do think that these platforms should have a responsibility for that. I understand that it's difficult and I understand that that's why they stopped trying because it was too hard to do and everyone's gonna complain about you're doing this and you're doing that, but. don't think it's because it was too hard. I think it's because the content that gets the most attention includes a huge amount of this wellness content. And that's how wellness products are getting sold. And those companies that are selling wellness products using social media, they are the customers. We are not the customers. Yeah, no, mean, you're absolutely right about that. Yeah, so it's... um I don't know that there's an answer. certainly think that, I don't know, I'm an ethicist, so like, I probably have very unrealistic ideas about like, I think that everyone should be really responsible for the benefits and harms that they cause in the world or encourage in the world. And this is why I would be terrible at running some sort of bazillion dollar corporation, because I would be like, I think we're hurting people. Maybe we should not do that. I am under no illusions that that will be the future of social media. be. That's the thing. It could be. And if anyone listening has a lot of money, I want to create that because I've been thinking about this for a long time. Like I think that the problem as you've laid it out so clearly is capitalism. And if we had people, founders, inventors, whatever you want to call them, of an app that was dedicated to not amplifying disinformation. in having consequences for calling people slurs, it is possible to do, but the problem is it's not going to be the most profitable version of that app, right? And so we have in these handful of, you we a very limited set of platforms. Across these limited set of platforms, we generally have people who are seeking out the most profit possible. And that's their job. That's what they were appointed to do. That's their responsibility. And so that's what they're doing. But it doesn't have to be that way. It is possible to create a different product where the value that you're providing is not overwhelming people with like AI videos and nonsense that's not true and things that are just meant to rile people up without giving them any solutions. Like it doesn't have to be that way, but these are choices that have been made. And if you put different people in charge, we can make different choices. So all I need is some money and a couple of developers. Anybody wants to send those my way, you know where to find me. But I am serious about it. I've been thinking about this for a long time because you know that I spend a lot of time on these platforms. create a lot of content. So I see a lot of the harm. And I am just so frustrated that nobody, none of these billionaires cares to do the right thing. They could afford to lose a little money and do the right thing, but they choose. not to. The one thing I want to say going back to Paloma is that, because I feel it's my error and not having mentioned it, is that this was a smart young woman. She had graduated from Cambridge not long before this all started. And I want to emphasize that because this isn't an issue of people who are uneducated getting manipulated by people who are, which often the wellness influencers also are not, super educated. But it's that the propaganda is so effective that really anyone can be taken in by it. but the other thing that I think is also really important here is, again, I completely agree with you. It is an incorrect assertion when folks are like, well, just, know, people believe this stuff. They're stupid. They're dumb. That's the problem. Absolutely not. People who are very intelligent are actually some of the most likely people to believe conspiracy theories, to buy into misinformation. And part of that is because folks can be, especially if they don't also have a balancing level of skepticism, which is, I think, something that I notice much more in folks who who aren't as susceptible. But there's been a bunch of studies showing that, like, yeah, people who are really intelligent, you're particularly at risk. And that's actually part of what's even harder, right? Because folks who are really smart assume that they will not be susceptible to incorrect information. So it's a... Now what we do know is associated with beliefs in misinformation and disinformation is trauma. So people who've had psychological trauma, people who have had really negative experiences. For example, there was a study looking at whether or not mothers were willing to get their kids vaccinated. uh I believe this was during COVID. I think it has to do with COVID-19 vaccine. And women who were mothers who had had negative experiences in the healthcare. space. They had been mistreated. They had been traumatized. They had birth trauma. Those were some of the folks who were most likely to be very skeptical of vaccinating their children and very much question the evidence that was presented to them in a way that was everybody should have questions. not implying that people who have questions shouldn't, but folks who were less likely to believe the evidence that was presented to them. Yeah, and I do think that's part of what happened in this specific example as well, because the narrative that after that initial hospitalization, the narrative that Paloma started to develop or that was developed for her, you it's a little bit unclear, but was that the initial folks involved in initial hospitalization had done inappropriate things. And so part of how she got to believe that it sounds like she believed that she didn't have cancer was that there had been reference while she was in the hospital to a differential diagnosis in terms of the subtype of non-Hodgkin's lymphoma that she had. And somehow it got twisted into this idea that cancer was only one of the diagnoses on a differential diagnosis for her. And so she started to believe that they hadn't investigated the other things on the differential. And so she didn't even have cancer and so she didn't need chemotherapy, et cetera. And I just wanna say in case there's some non-medical folks listening, a differential diagnosis is a list of problems you think might be happening. It's usually when you first are interacting with a patient and they're telling you the symptoms that they have and what kind of problems they've been having and you start to think of what medical problems might cause this set of symptoms that I'm hearing about. And that would be your differential. And so the whole point of a differential is that they're not all things the person is experiencing. There are a list of things you think the person might be experiencing. then with labs or imaging or additional questions, you kind of narrow in on what you think the actual diagnosis is. And so if someone thought that lymphoma was one on a list of multiple things they might have, you can see why they might be like, well, why aren't they investigating the other things to make sure I don't have the other things before deciding that I have lymphoma? But that's not what actually happened in this case. It's that they knew she had lymphoma because they had a biopsy. You know, they had biopsy this tissue. knew she had a pathological diagnosis of lymphoma, but what they didn't do was like additional stains on the specimens to determine which subtype that she had, which would not have, according to this coroner's report, would not have changed her initial treatment course. It might've affected a secondary treatment if she had gone through the initial treatment that was recommended and hadn't had success, then it might've. been helpful at that point to do this additional testing. Anyway, I know those details are not super important to most people, but the point that I wanted to make is just that she was somehow convinced that this term differential diagnosis, when it was used for the subtype of her lymphoma, somehow actually was about her overall diagnosis and then decided that she didn't even really have cancer. And of course, if you don't think that you have cancer, you're not going to seriously pursue treatment for cancer. And you know, I can also understand how comforting it must have been to let herself believe that she did not have cancer because cancer is really scary. and this is one of the There's so much mistrust and distrust that almost every conference I have been to or applied to submit something to or whatever, almost all of them for the last year or so are pretty much all on how do we address fractured trust between healthcare providers and patients. And the problems I think is that, know, it's not just, this is not just an information problem. Right? Like this is an emotional problem. We make decisions. It's not, it's, always interesting to me when folks will be like, well, I'm not an emotional person. I'm very rational. We're all emotional people. Like that's literally how we stay alive. Our emotions are part of what trains our brains to remember things and tells us what's important and tells us when we're safe and when we're not safe. And, or at least gives us clues. And it's part of how we build memories. And it's part of how we build connections in our brains and I think a lot of us as clinicians, you we were not necessarily trained. When I think about like ethical guidance, for example, there's so many things, for example, about ethical analysis of cases that are extremely focused on a very narrow set of like rational approaches to these questions. And that has, I think, been a major problem in both medical education and ethics education is that we actually have to attend to people's fears. Because when we are not attending to their fears, when we are not taking those fears seriously, when we are not taking people's questions seriously, it is so easy for folks to, they're gonna find someone who will. And it is so easy, the algorithm knows, it knows you, and it's gonna feed you the things that are gonna make you feel better. And that's the thing that we're seeing with AI, right? Like AI is gonna give you the answer that makes you feel better, that you like. I do want to just say Gabriel, Paloma's brother, he states very clearly that the reason he has been pursuing this, the reason that he wants someone, basically their mother held accountable is he doesn't want to see other people going down the same path that Paloma went on. And unfortunately, I think we're seeing more and more people do that because of exactly what you just described. Because they come to see us, we're very like, here are the facts. This is your diagnosis. These are the treatment options. Here's the risks and benefits. And all of that is true and accurate. And it's devoid of emotion. And we can hold people's hands. I'm not saying that we're totally uh unemotional people as physicians, but obviously we do the... There's a wide variety of bedside manners. Yes, and we do the best that we can. All of us, I really feel, are doing the best that we can. And that doesn't mean we can address every fear because a lot of times we don't have an answer for the question. There are a lot of things that are unknown and we will tend to say, we don't know that. Like even these, you know, who's gonna survive? We can say 80 % of people with this condition will survive with this treatment, but we have no ability as of today in 2025 to say, you. are going to survive or you are not going to survive or what are the chances for you as an individual? We have population level statistics, but we don't really have the skills yet or the tools yet to say for an individual in front of us, what's likely to happen to that person, right? We have some pieces of information we can use, how advanced the disease is, cetera, but there's a lot that we don't have. And so when people hear that, it's obviously not reassuring when someone says, I don't know. I don't know how much longer you have to live. don't know. for you as an individual, whether you will survive this. And we will tend to be very fact-based. And then they'll go online and they'll find someone who's gonna tell them, oh, don't listen to that. All you have to do is eat these things and take these supplements and your cancer is gonna be cured. and certainty feels so good. So good. I think the other aspect, you know, as a, as a clinician, I mean, I get these kinds of questions, not, not about cancer care, because that's not my specialty, but you know, around anesthesia, especially like high risk cases we do. And, know, I have to tell people for certain things like, know, you have a high risk of these certain negative side effects happening, or you have a high risk of having this very negative outcome. And these are the things I'm going to do to try to prevent those. And these are the things that I'm going to offer. but I'm telling you about it because I know it's a risk and it's my responsibility to have this conversation. And that can be really difficult for people to receive. It's very hard for us as clinicians also when you're when you're working with a patient or a family that that has especially really deeply ingrained beliefs that are not in alignment with any evidence that we are aware of. Any evidence that exists, one might say it is the amount of time and emotional energy that is required to to be with that patient with that family through this process. It is astronomical. And one of the things that I hear in, for example, ethics consults that are around families that have deeply entrenched beliefs that are not factual is that people are like, but I also have to take care of these 25 other patients and I'm spending hours and hours talking to these people about things that have no basis in reality. And I know that I need to do it because I know that it's important to save this child's life and to make sure this child has the outcome that they deserve. And I also now don't have enough time to take care of all those other patients that also deserve those things. So that I think also really adds to the uh moral burdens that come for clinicians who are really trying to lean into these relationships to build that trust and the exceptional frustration and the emotional exhaustion that comes from having these discussions over and over and over again. Yeah, and I mean the BBC did an interview with a physician who I am not sure if he, I think he was involved in her case, but he might not have been. He might just been commenting on it, but he was saying how cases like this will stay with all the healthcare workers who interacted with her for a long, long time because it was a preventable tragedy. I mean, largely preventable. Of course, again, we don't know what would have happened to her specifically if she had pursued medical treatment, but It's really hard to work so hard to try to convince someone of what is real when they have really bought into something that's not. And it's our duty, and I think most of us take that very seriously, and it's really, really hard, especially when we're not successful and then that person has a terrible, terrible outcome. Absolutely. And you know, as I watched that clip, and immediately I had a series of cases from my career that immediately came to mind. Some of those patients died, some of those patients lived, some of those patients we were successful in getting them to treatment, and some of them we were not. And that doctor is absolutely right. Because these are the things I always I, lot of times we'll talk to trainees about how we have, like little ghosts that we carry around with us of, you know, our past mistakes of, patients who didn't survive of patients that, we made a medical error or anything like that. And a lot of these, they're really these memories, these, these emotional components, they're, driving us to try to prevent harm in the future. And I'm glad that oh we don't forget these cases because I don't think that we can move forward and try to repair these fractured relationships with the public without having that without bringing those with us. Yeah, people often say surgeons carry with us a graveyard of all the patients we've lost. And I think that's very, very true. I'll tell you, know, we try to be funny. I mean, we're usually pretty funny and I'll be honest, this was a heavy chat.. Yeah, yeah, I tried, but I didn't find many moments where it felt appropriate to bring in levity today. No, because none of us want to make fun of people who are in this situation. Right. I mean, that's I don't I don't make fun of patients. That's life goals right there. um That's just that's just being a good doctor is not making fun of your patients. Thank you for doing all that labor and reading that long, long inquest. We will put a link to it in the show notes if you too would like to follow. Arghavan's path and read the inquest. And we'll put some links to some other resources too. What's bringing you joy this week? I'm so glad you asked because I've been dying to tell somebody about the Hidden Talent. Yes, it gets to be you. And then hopefully people will listen to that episode and it'll be them too. I somehow fell into, you you fall into these like spaces on social media platforms and somehow, sometimes you don't know how you got there. This is one of those. There's a, if you search in TikTok, maybe also in Instagram, I don't know. But if you search in TikTok for hidden talents, what you will come across is, video after video after video of people trying to sing songs that they have no business singing. they're very earnest about it usually. And the premise is that they're trying to see if this hidden talent, their singing talent, can be an option so they don't have to do their job anymore. And they become a massive artist. And so far I have not come across one who should quit their day job. But people are filled with humility and willing to laugh at themselves and put out some very interesting takes on music that we all know. And so, yeah, it has brought me some laughs and it probably will to anyone else who gives it a go. It reminds me of, what was that show, and I'm so bad at pop culture, which is terrible, but what was that show, the singing show where like people, like interview hundreds of people. It was like the very first, It's not America's Got Talent. oh, yes, you got it. It was here in the brain. I just had to like pull that thread out. Yeah, American Idol. I remember that there was, they would have a lot of folks in, know, audition, if you will, who were clearly not going to make the cut, but by God, they were funny. It's true. Same vibes. Same vibes. Anyway, I can talk about it for a long time as I watch too many of these videos. But for a laugh, check out Hidden Talents on TikTok. How about you? What's bringing you joy? what is bringing me joy? Well, I already said Jesse Wells last week, so I guess I have to come up with he's still on my list, though. But yeah, I've been playing more piano, which is really fun. I took up piano in my 40s. And like I, I'm really, I really look forward to doing that, because it's something that doesn't have anything to do with, with health care. And it doesn't put me on social media more than I'm already on there. And yeah, I'm enjoying that. I'm really trying to not lose that connection with the creative things in my life. Okay, great. Episode three, done. That's it for, yes. That's it for this week's episode. If you didn't like what you heard, this has been the House of Pod. If you liked it, don't forget to subscribe to The Present Illness. Leave us a review, tell your friends, your primary care doc, your family. mean, anyone you know really, just send them our way. We have really appreciated those of you who have sent this to your friends. We've been delighted to be connected with them. You can follow us. We are on all the socials. We're on the blue sky. We're on the TikTok. We're on the Instagram. You can follow Argevan at ArgevanSalasMDPhD and ArgevanSalasMD. There will be links in the bottom of the show notes. I can be found at Alyssa Burgart or BurghardtBioethics with an X at the end. We post smart stuff and we're out to have a good time. And we'll be back next week with more headlines, hot takes, and doom scrolling, hopefully wrapped in some more laughs next week than we had this week. Yeah, we need a funnier topic next week. Until then, agitate, hydrate, take a nap, and we will see you next time on The Present Illness. And before you go, last little words of caution, don't take advice from random people on the internet. This show is for informational purposes. It's meant to be fun, and it's certainly not medical advice. Please take your medical questions to a qualified professional. All right, we'll see you next time.