EPISODE 18: VINCENT SCHMITT AND YOKO MOTOHAMA
Andy Miles: Hello and welcome to “Akathisia Stories,” a podcast co-production of MISSD and Studio C Chicago.
MISSD, the Medication-Induced Suicide Prevention and Education Foundation in Memory of Stewart Dolin, is a unique nonprofit organization dedicated to honoring the memory of Stewart and other victims of akathisia by raising awareness and educating the public about the dangers of akathisia. MISSD aims to ensure that people suffering from akathisia's symptoms are accurately diagnosed so that needless deaths are prevented. The foundation advocates truth in disclosure, honesty in reporting, and legitimate drug trials.
On this episode, we hear from Vincent Schmitt and Yoko Motohama, parents of Romain, a 16-year-old boy who tragically ended his life in 2021 after being prescribed a high dose of Paxil -- known in France as Paroxetine -- and suffering the effects of akathisia for several agonizing months.
Vincent Schmitt: It’s criminal in some sense to make people believe that the drug is doing good, usually good. We never mention any risk of suicide. And even with suicide prevention lines, call lines – if you call them they will never ask you whether you’re taking any antidepressants, which should be the very first question, at least one of the very first questions you should ask: Are you taking any legal or illegal drug, and especially SSRI antidepressant? They never ask. They never ask. I think this attitude is killing many people.
Andy: We’ll have Vincent, Yoko, and Romain's full story in a moment.
September 20th is International Akathisia Awareness Day, a global observance founded by MISSD in 2019. It’s a day to honor and remember all those impacted by akathisia while spreading critical knowledge to save lives.
This year, MISSD has been actively raising awareness through various initiatives: launching a digital campaign on military bases, reaching Arizona commuters and college students with outdoor advertising, and amplifying veterans' voices in a new public health video addressing akathisia and the dangers of polypharmacy.
Though we're making important strides, there's still much work to be done. Please share MISSD's free resources and consider making a tax-deductible donation to support our vital mission. As a grassroots nonprofit, MISSD accepts no funding from the pharmaceutical industry and depends on the generosity of people like you.
Every contribution helps us educate more people, reach new communities, and reduce suffering. Thank you for being part of the movement to make akathisia a household word.
Yoko Motohama was born in Japan and earned a Ph.D. in computer science. She did postdoctoral research in the United Kingdom and spent a decade in Japan as an entrepreneur importing French wines.
Her husband, Vincent Schmitt, a native of France, also earned a Ph.D. and became a lecturer in mathematics and computer science at the University of Leicester. Now based in France, close to Lyon, Vincent focuses on applied mathematics in the research department of a multinational company.
Romain Schmitt was born October 12th, 2004, in Leicester, United Kingdom, the son of Vincent and Yoko. When the boy was four years old his parents decided to relocate the family — which also included Romain's younger sister — to France, and not long after that to the Japanese countryside. Romain had already learned English and French and now became a fluent speaker of Japanese. After nine years the family returned to France, in 2018, where 13-year-old Romain started the third year of middle school. He had a good mind for math and physics and was interested as well in geography, philosophy, politics, and even nuclear science and energy, which his grandfather taught him about. Romain was also a good swimmer, played rugby and tennis, and aspired to become a professional soccer player, like his idol Cristiano Ronaldo. His love of the game even inspired Romain to master a fourth language, German, so that he could better follow his favorite team, Bayern Munich.
Vincent: I think he was an interesting boy, yeah. He was thinking a lot. He had many interests.
Andy: Yeah. I mean, it’s hard to believe that he did all of that in 16 years.
Vincent: Yeah. We tried to have this mix of education, both Japanese and French, so that they could see both worlds. This kind of international environment — we thought it was good for them to have different vision of the world, yeah. He was quite special. (Laughs.)
Yoko Motohama: He was very fit and he wanted to be in perfect shape and he was doing a lot of sports and it’s quite natural for any other boy that age. He started doing a kind of muscle training.
He had a bit of difficulty waking up in the morning, to be on time in the school. So we put him in a dormitory in the school for just a couple of months, actually, but during the stay I think he learned a lot from friends and he studied the muscle training and also I think he learned about the nutrition from friends or from internet, I don’t know, and he started to have – started to do a kind of special regime.
Vincent: Yeah, special diet.
Yoko: For example, he avoided to take oil or sugar. He liked the chocolate before but he stopped completely and he stopped sugar; no sauce and then no water, no liquid in the food. And he ordered me how to cook, what to eat, which food I need. He started to obsess —
Vincent: Yeah, it was striking. That was really the first time we said, oh, hang on, he’s doing weird things. And that went worse and worse. Before that, no so much — sometimes he was a bit weird because he was distant or whatever but we could not say, really. And he could be very talkative with me so we had good relationship contact, so as long as we could talk and so on, we say, oh, the kid is all right, more or less. But here it was special. I remember that starting during the summer selecting food in the plate, removing the sauce on the pizza. He loved pizza and now he could not eat pizza anymore. So yeah, we started saying, oh, that’s weird. This kind of food habit, obsession with food and diet, yeah.
Yoko: Slowly he started to have a problem. I start feeling that he was quite frustrated about that. And he started having conflict with us, with me especially.
Toward the end of the year, 2020, I found it was getting a bit difficult and then we started thinking to seek help from outside because it’s also the adolescent boy, it’s difficult to discuss with parents, especially with me. He thinks that I don’t understand about him.
Vincent: Yeah, right, OK. So basically he told his grandparents about the problems. The grandparents, they’re my parents; they were quite close to Romain. So that was on a Saturday; he visited them and then discussed with my parents, especially my father, and he said, “I have these obsessive ideas.” So we got alerted by my father, say, oh, hang on, your son has problems, these kinds of problems, and then we could – we discussed with him. And then, because he was asking, Romain was asking, we looked for some help, for some support outside the family.
Yoko: We went to the public service. Nearby there was a public institution to look after this kind of problem. So we went there but it was not – we were not very happy about it.
Vincent: No, we were not satisfied by their work.
Yoko: By their work, yeah.
Vincent: OK. Right? We have to say they considered us as very bad parents, for whatever reasons, and we could not communicate efficiently with them. They considered us as elitist because we lived in Japan and in England. So it was not a good start. And we tried to communicate, of course, to exchange things about Romain because we were really – we wanted this therapy [to work], but OK, by the end of the day, the child was not getting any better. So the situation at home was quite hot, somehow a bit tense because of his habit that was quite invalidating and we didn’t know how to react with this. But we talk about that with him and we understood from him — he was really a clever boy and he could really discuss about his problems. But everybody was trying to do his best and Romain was much willing to get rid of this or – OK, so we were trying to help. So that’s why we seek for another physician and we went to a private one, so that was very difficult to find.
And maybe you can explain. So that was in March ’21, and we visited this guy in Lyon. So Lyon is a big town nearby, OK, so we went to see this guy. And within 20 minutes – so we discussed a bit with the physician before, but within 20 minutes, he said, OK, it’s very serious, Romain; you need to take medicine. And he prescribed paroxetine. We were a bit surprised. We said, OK, this guy is saying so. So we had two opinions from the different physicians; one was saying nothing and he advised us – so that was a guy from the public service. He advised us to have family therapy, that we did. And the other guy in Lyon, private, say, no, no, instantly you should go on drug, on med, and I remember during this interview with Romain, two parents and Romain and the physician, Yoko tried to say, oh, maybe I have some problem with Romain that may be our relationship, and the guy disregarded that and said no, no, take the drug, basically. He say, you should have come before because it’s serious now and Romain should take the drugs. So that we did. That was a big, big, big mistake.
Andy: At the time, did any of you have reservations about him going on the medication?
Vincent: As I told you, Andy, I was just a bit surprised that within 20 minutes, five minutes, he prescribed drugs, but I didn’t have a clue what these drugs are, really, what they really are, and I was as bit surprised, actually, we got two different opinions like that. They both do the same jobs; they are both physicians and so on. But they have two diagnoses or two ways of doing things which are totally different. So I was a bit surprised, but to be honest with you, we were a bit tired and we just trusted this guy.
Andy: You hoped it would help.
Vincent: Of course. Oh, yeah, yeah, yeah. Yeah, of course. And you trust your doctors. We are not doctors so we have to trust doctors. So we did.
Andy: Once he went on the medication, did the trouble that he had with the medication start right away? Did that start to manifest itself immediately? Or was there a period in which it seemed to be helping?
Vincent: So things didn’t happen right away, suddenly, no. No, no. At the beginning, things went well because he could get rid of obsessive habits. I would say that – end of April; that was the birthday of my father. He [turned] 80 years old. And there was a family dinner and Romain was there and fine with everyone. He was eating properly and he had everything on his plate and he loved it. So there was some improvement. It didn’t get rid of all these silly habits, but that was improving. How can we explain that? Is that the drug? Is that the placebo effect? But it did some progress, yeah. Bad things, I think, started in June. And you saw that. [There were] special things happening, maybe two months after the first pill. So the doctor gradually rose the doses, so from 10 milligrams to 20 and then he got 30 milligrams, and eventually he went to 40; the date is the 8th of June, I think. So things were not going so well. So the guy rose the dose to 30 and then to 40. And he eventually get another drug, Tercian, to calm down (the things ?), which is a kind of antipsychotic, for sedation. That was the end of July, yeah.
Andy: Yeah. And you said he started at 10 milligrams?
Vincent: Yes.
Andy: So 10 seemed to be somewhat helpful but then, as they were escalating it, it just kept getting worse.
Vincent: That’s what we saw, yeah. More or less, yeah.
Yoko: It started from 10 and then week after it he increased to 20 milligram, and then soon, later, maybe it was one month, he raised to 30 milligram per day.
Andy: So a pretty quick escalation.
Yoko: Yes, actually. At the beginning, the doctor was more or less aiming at 20 milligram.
Vincent: We don’t know that. We don’t know.
Yoko: Normally 20 milligram is a normal standard pill, one pill, right? But about one month he seemed to improve. We were quite happy. But soon after he started having a sleeping problem, and every time I complained, the doctor raised the dose because at the time I didn’t know why he had a problem, sleeping problem. So I really don’t know why he couldn’t wake up in the morning. So that’s why I asked the doctor, “He cannot wake up; what’s the problem? Do something, please.” So every time he raised the dose.
Vincent: That was more or less in May, June, and there was an important exam for Romain in June, which is a French exam at French baccalauréat, so he had to wake up and to work a bit for that. It was really, for us, we were unsure that he could attend the exam.
And I think here, you phoned the doctor and that’s when he rose the doses to 40 milligram per day, on the 8th of June, yeah.
Andy: So during this time you write that he also became detached, his personality changed, and he gave up his sporting activities, became irritable.
Vincent: We saw that in May. She noticed that. She noticed that. Romain was a bit weird with her, because I was working a lot and I didn’t pay attention so much. I was quite happy with the improvement I saw in April but Yoko kept on telling me ah, he’s not very well; he cannot wake up in the morning. So I say, hang on, his mom is taking to — he’s getting too nervous about that. But yes, slowly – in June he struggled with his baccalauréat, French baccalauréat, some oral exam in June, and yes, he became really weird. He became detached. I remember the day when we accompanied him to Lyon for the oral exam. We had lunch together so we tried to please him; that was over. He did his exam. He was on holidays. And I remember the day he was really – he was detached. Detached, yeah.
Andy: And “irritable with uncharacteristic anger”?
Vincent: Yeah. We had that. I think the first episode, I would put it in May or June. He broke a fan in his bedroom. For no reason. We don’t know. He broke it. And we had these kind of things happening. That happened in July or so and especially in August. So irritability, yeah, yeah. It was sudden. For instance, there was a poster on the wall in the main room at our place and I don’t know why, he had some argument with you, he was not pleased with that, he wanted to get rid of it, and he tore the poster like that. I said, “Hang on, what is he doing?” You see? And five minutes later he was laughing with his sister. “Hang on, what is happening there?”
In July — so he was on holiday. So we knew he had some bad time with his exam. He was a bit anxious. He struggled, really, to pass his exam. And so we left him. He was kind of doing whatever he wanted in July. And then his sleep cycle was reverted. He was awake in the night and sleeping during the day. So though it was marvelous weather outside, as we told you, he was doing some sport – hang on, he was on holidays so there was no need to be anxious or whatever. So, again, we say that to the doctor who give another drug by the end of July. That was Tercian, so it was an antipsychotic, just to sort out this problem. And he had also an episode of — (inaudible) — crisis. He broke a couple of things but I think that we put that in August. He broke it, OK, for silly reasons. Maybe no reasons. Once he got very angry for the use of the computer. He argued with [his sister] and, yeah, he really got angry in a weird way and I thought, hang on, is he becoming a psychotic because – (laughs) – that was strange. And it frightened me.
And I remember that you were quite afraid of him because we could not really predict his reaction, yeah.
I think, at the end, what happened in September, when Romain committed suicide, he was not afraid of dying. I don’t know; I was not in his head, but —
Yoko: Maybe I —
Vincent: Maybe you can explain it, yeah.
Yoko: May, June, July, mainly the problem of sleeping, and occasionally some violence or some irritation could appear. It was August, especially since the antipsychotic drug was added –
Vincent: Tercian.
Yoko: – he spoke very fast.
Vincent: He became very talkative.
Yoko: Very talkative. That never happened before.
Vincent: He was quite shy.
Yoko: I never heard that.
Vincent: He also started betting, betting on football games. So you buy tickets and you bet on the results. So he spent a lot of money.
Yoko: These kinds of things never happened before.
Vincent: There was something very important that happened. On the 15th of August, suddenly we found him in the shower in the evening, sitting in the shower, and he was staring at infinity, could not talk. We tried to talk to him and he took long so we realized that his brain was not working properly.
Andy: And how long was he in the shower when he was in this catatonic state?
Vincent: I would say that lasted 20 minutes, maybe a half an hour. So we realized – he was naked. OK, he has to move. So we gave him Tercian; he had to take 10 drops of Tercian in the evening, so he took Tercian and then he recovered a bit and he could start talking. I asked him whether he understood what was happening to him and he said, no, I don’t understand what’s happening to me; I don’t understand anything; the only thing I know is that I’m fed up with this shit life.
Hang on, he just had one week in the south with his grandfather in marvelous houses and whatever, and he was telling me – (laughs) – his life was shit? (Laughs.) So I said, hang on, what’s happening there? But the important thing, he lost it completely. He lost his mind completely in the shower.
And we eventually went to hospital because he had another crisis on the 27th of August. But we decided that if ever that happened again he should tell us. And actually he had another violent episode – I think that was the day when he broke his phone. So we heard some noise in his room, and I was leaving to play tennis with a friend and I saw Romain coming to me and said, Dad, take care of me; I don’t understand what’s happening in my head. OK? And — OK, so that was it.
So the physician was not here so we visited twice two different doctor and both of them – so our GP realized that maybe paroxetine, the drug, is involved so she wrote a letter for the physician and she said, if ever I also go on leave, because everybody is on holiday in France at that time, if ever you have a problem, go directly to hospital. So that we did on the 27th because Romain had a problem again. So we were waiting to see the physician again when he was back from holidays and that was on the 6th of September, so we could see him. Meanwhile, there were other episodes where Romain did dangerous things. He swam in the lake, very far in the lake, so a pédalo – you know these boats with pedals on the lake? So somebody using a pédalo had to bring him back on the shore. So that was quite dangerous, you see.
So there were things like this. And he was certainly – as I told you, he was certainly disinhibited at the time because he did dangerous things, betting for football, playing with money, and he also — because he broke his phone he also used the phones from strangers sometimes, and he stole the bike from the neighbor – (laughs) – at some point. So hang on, a Japanese boy with Japanese education would never do that; this was not Romain. So of course (with our things ?) we saw now, we realized – at the time time we were just very, very, very surprised.
So he saw twice doctors in August. They ask, oh, Romain, are you suicidal? I was a bit surprised. I remember (he said ?) no, and that was it. So for us, the situation was safe, but we really saw that something was not good with Romain. So as soon as the physician was back from holiday on the 6th of September we phoned and we had an appointment on the 7th. So basically — we tried to tell you, Andy — we talked to the physician within 20 minutes because I had a prepared list with everything to tell him, and he say – so he looked a bit concerned. So we asked him for a diagnosis and he said a weird thing about a personality disorder or whatever, for whatever he learned from DSM. And he say, but don’t worry; he should go on with school; let him go to school; I will take care; I will change the medication on Friday. OK, “I’ll take care.” And OK, bye-bye, go back home. And basically this week was really awful for Romain. He could not manage to go to school. He was late every time, missing his bus, his train or whatever. And on the Wednesday – so that was the 8th, Romain was at home because he had – Wednesday afternoon he’s off for school in France. So I tried to take this occasion, this opportunity to talk to Romain and he spent all the afternoon swimming in the swimming pool. That was really weird and the neighbors were shocked by his attitude. And I tried to talk to him and he basically was not concerned about anything, very detached. He never answered any of my questions. So I went back home and I realized that actually there was a problem. I was very happy on the Tuesday after the visit at the physician, who say, OK, don’t worry; I’ll take care on Friday. And on Wednesday I tried to talk to my son and it was impossible, just impossible. So suddenly, like, we went up and down; it was a bit like that with Romain. We followed his mood cycle. So all we waited for is his appointment with a physician on the Friday. So Yoko decided to pick up Romain at school.
And tell Andy about Friday, his last day, because he stayed by my grandparents on – he had a crisis on Thursday eve so I called my parents and said please help us and come and have a look at – they decided to take Romain home at their place with them, so Romain spent the night at their place from Thursday to Friday. So on Friday I got a call from my mum on Friday morning saying, oh, your son is fantastic; he woke up fine this morning; he was not late and he was going to school. I said hang on, what is happening? (Laughs.) And then we got this message back from the math teacher, say, no, no, your son is fine.
So on Thursday eve we wrote an email to this guy —
Yoko: Because it’s completely strange and I don’t understand why he’s so tired. So we wrote that email to the professor the Thursday evening, yeah. And we got an answer on Friday morning. The professor said Romain is fantastic; one of the best students; he’s fantastic doing the school.
Vincent: Participating.
Yoko: He’s the most active student in the class. He’s fantastic was his answer. (Laughs.) So we were happy about this [on] Friday morning.
Vincent: Hang on. He’s miserable at our place when we see him, and his grandmum and his professor say that he’s just doing fine. So that was incredible, yeah.
Andy: Would you say that was because he was having ups and downs and he was having good days? Or would you say he was better at faking it when he was with other people?
Vincent: No, no. Yeah, yeah, yeah, yeah. I think Romain made some extreme effort to look well with his mates or with people and so on. And that’s how I explained that. Maybe I’m wrong. But we could see that he was desperate – in a desperate state, yeah, when he was at home. When he was by his grandparents he was much better already.
Andy: Did he continue, during this time, to say things like, Dad, help me, I don’t know what’s going on in my head? Or was that a one-time confession that he shared with you?
Vincent: Just happened once, yes, just once. Yeah, yeah. I tried to talk to him on the Wednesday, so two days before the fatal day, and he was just not willing to talk to me. He was very high, actually, yeah, very, very high. (Inaudible) – disinhibition by the neighbors, actually, because the neighbors, they know us quite well. They say, I look at your son; he was swimming in the swimming pool but he was completely disinhibited. And that’s where – later I realized, when I discussed with them about Romain. But Romain told me exactly that, that he was making some huge efforts to look very social and friendly with other people, and he didn’t do that at home.
Andy: Yeah. Yeah. And I know you were going to talk a little bit about that last day and –
Vincent: Yeah, yeah, yeah. For friends, for his friends – we met his friends and could chat a bit. We didn’t want to present too much. But they say no, we don’t understand; Romain was perfectly fine, very friendly, even five minutes before his death.
So there was a camera in the station and when the police looked at the camera he was having fun with his friends, just five minutes before dying.
Andy: So there’s video of that.
Vincent: There’s a video, yeah, yeah. That’s part of the files that goes to court now because we took legal action, yeah. Yeah, yeah, And so in the end – to tell you about the end because everybody saw that from the camera – we were told by witnesses. He stood up suddenly. So he was on this bench with his mates, he stood up; the sequence took 20 seconds, just went down on the rail, facing the train that was coming. Very, very quiet.
Andy: And making plans right before.
Vincent: Exactly, yeah, yeah. So the thing is we met his friend that was with him during the day and they made plans for the weekend to practice sports and to work on school work together, yeah. They had plans for the weekend, yeah.
But the thing is for about two or three weeks we tried with family to understand what happened. We made hypotheses and so on and we didn’t find anything really that made sense.
Andy: When you got this news and were confronted with this information, this reality that your son had died – for months you had been dealing with a serious situation and you knew that things were not quite right with your son, but was this an outcome that you ever expected or feared?
Vincent: No. Thank you, Andy. No, we never put the suicide into the picture for the reason that he was (fooled ?) by physicians that gave him some drug, so we really thought and we were told that the situation is safe. So of course – would we have thought that there could be a danger, a risk, a suicidal risk, we would have acted completely differently.
Yoko: We didn’t (find ?) any danger, any risk. The only ones I heard that were suicide were in the GP. The night doctor asked a question to Romain – including Romain. We are a bit shocked to hear that word because we never heard – thought about that risk. So we totally, totally, totally had no idea why that happened, no risk, no danger that could happen, but I didn’t know anything about that drug but –
Vincent: Drug was not an option. Drug was not an option.
Yoko: I didn’t know anything about that drug.
Vincent: We saw the physician on the Tuesday and he say, OK, don’t worry, he has to go to school, I take care, I will change the medication on Friday.
Yoko: Yes, but nothing to do with suicide.
Vincent: He asked the question, is Romain suicidal, I remember – (inaudible). Romain never say so. So there was the sentence he pronounced on the 15th of August, “I’m fed up with this shit life,” but I could – (inaudible).
Andy: So up to this day that we’re talking about, there had not been a time when you started to suspect that the drugs were making things worse.
Vincent: No, no, no. Until it happened, no, no.
Andy: Yeah. But after his death, then you started to have to pick up the pieces and figure out what happened.
Vincent: When he was on medication, he took some medication, some time he was a bit foolish or whatever, or he has this kind of manic episode. And I thought it could be drug-related. But I didn’t think that was necessarily a bad thing and that was dangerous.
Two weeks after, two or three weeks after –
Yoko: The death?
Vincent: – the death, Romain’s death, I wondered about the drug. So the drug is paroxetine and here I had a look on the vidal – so vidal is a medical dictionary for professional, and I had a look at the label of paroxetine. And here what did I read? All the symptoms that we mentioned to you: irritability, aggressiveness, not disinhibition but they say if you have these kind of troubles, agitation and so on, that was Romain’s case, or insomnia, you should contact the prescriber. And there was also mention in the label, suicidality for youngsters. People (who are less than ?) 25 years old. So I said, hang on, what is that? They’re all the symptoms that Romain had and suicidality. OK, I googled and I say “paroxetine and suicide,” and suddenly I got all these elements of the story of paroxetine with so many suicides that happened with the drug. And we also found quickly the trial in the United States, 2012, where GSK was condemned for concealment of security data – (inaudible) – and with fraud. And so they tried to hide –
Andy: “Fraud and concealment of safety data” —
Vincent: Yeah, yeah, yeah. Concealment of safety data I think are the terms of judgment yeah. So we saw that. So, hang on, this happened in 2012 and now are – no. So there was a question there. So I googled a bit and I found the name of Irène Frachon, who is a famous whistleblower in France for Mediator. I could exchange emails to her and she sent me to someone quite specialist of SSRI drugs, antidepressants, and that is Ariane Denoyel; she’s a journalist, and she introduced us later to Professor David Healy. With David Healy, who is a specialist with this drug, we got plenty of information too. So we started realizing because we got expertise from David Healy that the drug is really dangerous, could be really dangerous. We had David’s version, on the one hand, and we wanted to – we don’t want to believe what David says. We want to get convinced. And he say it’s a clear-cut case and it’s (therapy ?)-induced death, due to akathisia and disinhibition, basically. So that was his explanation. So OK. Very quickly, when we realized that the drug could be the cause of Romain’s act, gesture – so what we did, I phoned to the police and say, please have a look at the autopsy, look for the drug. So that’s what they did. And on the report there was a sentence that he could have had impaired judgment due to paroxetine that could explain the gesture. So that was written.
So from that point the police called me back and say, oh, it’s serious; look, we left things open so if you want to file a complaint later you will be able to do so. But they started believing, on the justice and police side that, there could be something. They didn’t try to close the affair. So there was – (inaudible) – David’s report. This. So from that we tried to have a different opinions, of course, because we wanted to make our own opinion about things and we started asking doctors. And here – (laughs) – that was a big, big disappointment.
Yoko: We asked many French doctors.
Vincent: French doctors, yeah, yeah.
So some of them were upset, some of them had some kind of very silly, ready-made answers. I was a bit shocked because we are scientists somehow so we are used to read scientific reports or whatever, even if it’s not mathematics. So basically they say things like, no, it cannot be the drug because the drug is only dangerous between day 10 and day 14. Hang on, that does not seem to make sense to me. We tried to get them involved and to make some reports that we could use for legal action, and even if the report says that the drug is not involved we would have been happy to consider the opinion, but they didn’t want to be in that. “No, I can’t say anything, I’m not expert,” or whatever, but they’re not expert but they prescribe the drug massively. So that was really weird. They said things like, I don’t know, suicide is a mystery; you should give up, or whatever.
You would not believe this story could exist but actually it’s very common. Romain’s story is very common, actually. We see very similar things.
Andy: Yeah. I mean, you found that other people had stories that were very similar to his.
Vincent: Oh, yeah, completely.
So, Andy, this is politics but this story changes completely because we discovered the way society works. We are very naive people. I love science, mathematics. I thought that science is doing good. OK, so we trusted doctors and so on. But actually, the system itself is not safe (at all yet ?). You’ve got, of course, industry. You’ve got the academia, academics, key opinion leaders. You’ve got doctors and they listen to their peers which are key opinion leaders, OK, and you’ve got also insurance company, you’ve got associations, and all that is talking, making noise, and so on. And now the thing is that we ask regarding the industry, if you ask – we ask GSK about the drug. “Is the drug dangerous?” Basically, that was the question. The answer, yes. If they cannot do anything else than to say yes, it is. And if I ask them, do you think in the case of Romain the drug could have caused the suicide, they would say, you have to ask this question to doctors; we won’t answer that. And if you go to doctor, the guy say, either I can’t tell you anything. And key opinion leaders say – actually, they really do some advertising for the drugs; they’ve been doing that for 30 years, saying that the drug can save lives, all these kinds of slogans that are actually wrong. And they tell their peers, the practitioners that the drug is safe. So you hear from your common doctor that the drug is always safe. They really have that in mind that the drug is safe, yeah.
So we discovered that of course usually academic papers are not written by academics. Actually it is written by company specialized in writing medical papers, and the industry decide who is going to write the paper and in what journals. And we’ve heard proof of that — (inaudible). (Laughs.) Basically these key opinion leaders in academia, they don’t write papers; they are just advertisements. They are invited by media – when there is a TV show about antidepressants they are here and they are saying, ah, we are doing good with drugs, and so on. We never heard – so the thing is, apart from the leaflets, apart from the industry, if you ask, you will never hear about the suicide risks and link to antidepressants – not by doctors, not by TV programs, no, no, no, no. Usually no, no. So it’s a lie by omission. It’s criminal in some sense to make people believe that the drug is doing good, usually good. We never mention any risk of suicide. And even with suicide prevention lines, call lines – if you call them they will never ask you whether you’re taking any antidepressants, which should be the very first question, at least one of the very first questions you should ask: Are you taking any legal or illegal drug, and especially SSRI antidepressant? They never ask. They never ask. I think this attitude is killing many people.
Andy: Well, in the United States advertising and marketing for these drugs is everywhere. If you turn on the TV you’ll see these “inspiring” ads where people are, you know, taking these drugs and they’re “living their best life” because of these drugs. What is the climate in France like in terms of advertising and marketing of these drugs?
Yoko: I think the market — in France it’s forbidden to market –
Vincent: To advert, prescribe drugs. But they do so.
Yoko: But – but – the doctor can talk about the disease and possible treatment on TV or journal, wherever. So again, we hear everywhere “antidepressants save life,” everywhere.
Andy: Yeah. So even though advertising is not allowed, the message is still loud and clear.
Vincent: You use it – yeah, that’s the point: You use key opinion leaders, that we say, I’m doctor, I’m practicing, I do science, I represent science, and I tell you that it’s working, it’s working, yeah, yeah, yeah.
Andy: Yeah, there’s this whole ecosystem and a lot of blame to go around. But what about the prescribing doctor himself?
Vincent: Yeah, so prescribing doctor is of course responsible, because in the case of paroxetine there is a – it’s not recommended. It’s written, “not recommended” and “you should inform patient about the suicidal risk,” which is clearly stated in the leaflets. So prescribers should inform you. If they don’t do so somehow – and they are responsible for what they are prescribing, of course. Yeah.
Andy: Is he more responsible than the company and the corrupted academia?
Vincent: I’m really angry at the prescriber, of course, but I’m really angry at corrupted academia; behind that there is industry. I think the one we had was really stupid, I’m sorry, and we were more stupid to trust this guy. All these guys are doing the same and it was basically his excuse when we had a chat during this conciliation meeting. “What I’m doing is just fine; everybody does that.” OK. So yeah, yeah, responsibilities are everywhere. We should take time; we have to understand many things. We should be quick because there are other people dying still, and doctors keep on prescribing this crap. So this has to stop. So even if these stories, like Dolin case is very old, all these stories have been ongoing for 30 years; there are still people getting killed by that. So we have to stop it. And we have to recognize responsibilities because it’s a society problem; it’s a health system problem. So it has to change. I’m pretty sure that these kind of things happen not only for SSRIs. (It’s symptomatic ?) of big problems, systemic problem.
Andy: In the notes that you shared with me, you said that the biggest revelation and disappointment for you was the discovery that experts lie.
Vincent: Yeah. (Laughs.) Yes. Maybe, yeah. I was shocked because – (laughs) – I always considered myself as a scientific; I have very good relationship with scientists, mathematicians, and here I discovered doctors – hang on, hang on – (laughs) – hang on — so the guys, they don’t know I’ve been in academia and they are telling me absolute bullshit. I’m very furious about that because it killed my son. Yeah, yeah. Yeah, I’m very disappointed. Yes, yeah.
Andy: That prescribing doctor, he didn’t seem to have interest in doing any therapy except putting the drugs in his system.
Vincent: The sessions were about 20 minutes long. It cost a fortune. And I think there was no therapy, really. I’m not sure this guy knows about Romain’s life, yeah, anything about Romain’s life. But I would not say so. I will wait for the next meeting and see. But yeah, you’re right on that. We’ve been told that 20 minutes for a therapy session is not enough.
Andy Miles: You've been listening to the “Akathisia Stories” podcast. We'll have another episode soon. If you'd like to share your own story for this podcast, please email studio.c.chicago@gmail.com, and please share this podcast, rate it, and subscribe.
I'm Andy Miles, and I'd like to thank Vincent and Yoko for their time and candor, Wendy Dolin and Kristina Kaiser for their dedication, and I'd like to thank you for listening.