https://www.bbc.co.uk/iplayer/episode/m001n39z/panorama-the-antidepressant-story - Panorama - The Antidepressant Story
2023 06 21 - yyyy mm dd
In the UK, around one in seven now take an antidepressant. Globally they have made the pharmaceutical industry billions. When the current generation of drugs was launched 35 years ago, they promised a safe and effective treatment, free from the side effects of older medicines. But have they lived up to those claims?
While many people say they have benefited from taking them, Panorama reveals evidence of some companies trying to conceal concerns about their drugs, following patients who have suffered serious side effects as they continue their fight to be heard.
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A partial transcription of the above follows #mm:ss denotes mm minutes, ss seconds of video running time.
The programme is available on BBC iPlayer for 11 months as of 21-Jun-2023, so maybe 20-May-2024?
https://raypeat.com/articles/articles/serotonin-disease-aging-inflammation.shtml Ray Peat - Serotonin Disease Aging Inflammation
https://raypeat.com/articles/articles/serotonin-depression-aggression.shtml Ray Peat - Serotonin Depression Aggression
"Three years before Prozac received approval by the US Food and Drug Administration in late 1987, the German BGA, that country's FDA equivalent, had such serious reservations about Prozac's safety that it refused to approve the antidepressant based on Lilly's studies showing that previously nonsuicidal patients who took the drug had a fivefold higher rate of suicides and suicide attempts than those on older antidepressants, and a threefold higher rate than those taking placebos."
"Using figures on Prozac both from Lilly and independent research, however, Dr. David Healy, an expert on the brain's serotonin system and director of the North Wales Department of Psychological Medicine at the University of Wales, estimated that "probably 50,000 people have committed suicide on Prozac since its launch, over and above the number who would have done so if left untreated."
The Boston Globe, 2000.
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Narrator – Wendy Lloyd
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#00:05 Archive ?Jeremy Kyle?: This pill could solve all of your problems.
#00:09 Audrey S. Bahrick Interviewer:That’s it. We are recording, are you good to go?
#00:13 Archive ?Jeremy Kyle?: And it may mean the end of depression as we know it.
#00:18 Audrey S. Bahrick: I threw out a lot of my files. I thought I might have been done.
#00:22 Narrator: They were a new generation of antidepressants hailed as the latest wonder drugs.
#00:26 Trish Mathews: It sounded like, you know, the perfect drug.
#00:31 Mark Horowitz: I thought, I’d heard so much promise about these things, I thought this might be the thing to fix everything.
#00:38 Audrey S. Bahrick: I loved being on Prozac.
#00:40 Narrator: Now one in seven of us is taking an antidepressant.
#00:42 Professor Wendy Burn: I see lives being changed by them. I see lives being saved by them.
#00:50 Archive Anne Diamond: Wouldn’t you be tempted to take it, again and again?
#00:52 Narrator: But only now decades after their launch, is a different story being told.
#00:55 Professor David Taylor: I was you know baffled by, you know, how could this be?
#01:00 PSSD Young Female: I require medical attention, but there is no medical assistance to be found for this condition.
#01:03 Narrator: How a patient movement revealed what some drug companies had tried to ignore.
#01:09 Luke Montagu: I didn’t know about any of this. I hadn’t been warned.
#01:12 James Davies: We felt patients on the ground had been vindicated.
#01:14 Professor David Taylor: In the mental health sphere, we’re quite good at making the same mistake more than once.
#01:22 Narrator: Many say they’ve been helped by antidepressants. But for those harmed by them, it’s a struggle to be heard.
#01:30 Audrey S. Bahrick: I’ve been waiting for you to show up for fifteen years. Thank you for coming. It’s amazing.
#01:52 Archive Anne Diamond: Now, it’s 36 minutes past the hour and I’m going to show an incredible drug that imagine a drug that could make everything feel better, that could take away the stress of everyday life, and transform you into somebody completely different.
#02:06 Narrator: That drug was Prozac. One of the first in a new class of antidepressants.
#02:17 Archive ?Jeremy Kyle?: Over nine million people take it here an the number is growing every day.
#02:21 Professor Wendy Burn: The first person I ever prescribed to. She had been depressed for years and basically would hardly leave the house. She phoned up a week later and said, I don’t need to see you, I’m going on holiday. And she took her whole family to Disneyland in Paris. It was just amazing. So they really did seem to me, like miracle drugs when they came along.
#02:47 Prozac Interviewee: I’ve been on Prozac now for about six months and it’s changed the way I think. I’m more confident, I want to go out more. It’s just changed my life completely.
#02:56 ??: All of a sudden here comes somebody that says try these on, try this Prozac on and I tried it on. And for the first time in my life, I went whoa, is this the way reality really is.
#03:07 Professor David Nut (Professor of Neuropyschopharmacology): Prozac had some real advantages. It was the first time we’ve actually been able to prescribe a medicine that didn’t have side effects, or at least it didn’t have side effects that patients complained about.
#03:31 Audrey S. Bahrick: The first thing I remember was cover story where Prozac was called “The Miracle Drug.”
#03:35 Narrator: In the early 1990s Audrey Bahrick was working as a counsellor at the University of Iowa.
#03:45 Audrey S. Bahrick: At the time, I had just taken a leave of absence from my job to go with a partner to another city, and that adjustment was difficult and I decided to seek out Prozac based on what I had read. There was no discussion about what to expect.
#03:58 Narrator: Prozac gave Audrey the boost she’d hoped for.
#04:08 Audrey S. Bahrick: I did feel confident and energised. It was very novel, I was not a person who had a lot of energy before that. I loved being on Prozac.
#04:42 Mark Horowitz: This is me looking very happy with a fuller head of hair getting the prize for public communication because I did a few public education events, in which I talked in part about the benefits of antidepressants for treating depression and other disorders so I was given a couple of prizes. My mum was impressed by it. I went to an all boys school and I was a know it all, I was a smart-ass. I was the shortest in the class. I was the youngest and I was bullied. And I think that had a big effect on me.
#05:19 Narrator: Mark was diagnosed with depression when he was 21. He’s been taking antidepressants ever since.
#05:30 Mark Horowitz: My first one, I was super excited, I almost ran to the pharmacy to fill the script. I remember ripping open the packet, seeing these green and white capsules and thinking, you know, this is a very exciting moment. I was . . . I couldn’t wait to start them. I thought, heard so much promise about these things, this might be the thing to fix everything. I’ve got a different view of them now.
#06:01 Narrator: During the 1990s, these new antidepressants became global blockbusters. Driving up antidepressant prescriptions in the UK by more than 200%. The drugs made billions worldwide.
#06:25 Professor Jerry Rosenbaum: The marketing was massive there was lots of, um, conferences and presentations and , um, you know, lunches and dinners. These were extraordinarily commercially successful launches.
#06:42 Narrator: This new generation of drugs were called SSRIs, Selective Serotonin Re-uptake Inhibitors. They were made by several companies, and had an array of brand names.
#06:54 Professor David Healy: I’m David Healy. I’m a medical doctor a professor of psychiatry, and I’ve worked on the serotonin system one way or the other for over 40 years.
#07:12 Narrator: SSRIs target a chemical called serotonin. It can affect mood, appetite, sleep and sex drive. Serotonin is found in the brain and throughout the body.
#07:26 Professor David Healy: Everybody thinks because it is an antidepressant, that it’s doing something to the brain. But actually in fact it’s much more likely to be doing something to our body.
#07:43 Trish Matthews: I knew a little bit about SSRIs. Only really that they were a drug that you used to help your serotonin levels in your brain. And that seemed to be how they worked.
#07:54 Narrator: Trish Matthews was training as a nurse in the late 1990s.
#08:01 Trish Matthews: I think it was an accumulation of the training and home life and everything else, the pressure of it. I just started to feel really stressed and struggling to manage really. I went to the doctors and I was put on an antidepressant.
#08:17 Narrator: It had long been believed by some that depression was linked to serotonin, but no one knew exactly how. Drug companies though said low levels of serotonin were causing a chemical imbalance in the brain and their antidepressants could fix it.
#08:48 Zoloft Advert: You know when you just don’t feel right. While the cause is unknown. Depression may be related to an imbalance of naturally occurring chemicals between nerve cells in the brain. Zoloft, a prescription medicine works to correct this imbalance. When you know more about what’s wrong, you can help make it right.
#08:54 Trish Matthews: My thoughts were the issue was a chemical imbalance in my brain that needed remedying. You know, it sounded like, you know, the perfect drug.
#09:03 Professor Tony Kendrick: I’m Tony Kendrick. I’m a GP by background. I’m Professor of Primary Care at the University of Southampton. I can remember explaining in the past to patients that these drugs worked by building up the levels of serotonin in the brain, which is why they might take a few weeks to work because the serotonin got run down when they became depressed through whatever reason.
#09:33 Professor Joanna Moncrieff: I think the chemical imbalance message was absolutely key to establishing the antidepressant market and, and to keeping it going.
#09:44 Narrator: Joanna Moncrieff is a Professor of Psychiatry at University College London.
#09:49 Professor Joanna Moncrieff: If you are told that there’s something wrong with your brain and that we have a drug that can put that right, of course it makes sense to take it.
#09:57 Narrator: She was sceptical about these new antidepressants from the start.
#10:10 Professor Joanna Moncrieff: I’ve been working in psychiatry since the early 1990s, and my interest has always been in the role of drug treatments and whether they’re as beneficial as we are usually led to believe that they are.
#10:20 Narrator: Panorama has obtained a confidential document from inside Pfizer. It made the UK’s most prescribed antidepressant, sertraline.
#10:27 Interviewer: Have you seen any of the internal company documents talking about the serotonin theory?
#10:31 Professor Joanna Moncrieff: No. Oh gosh. How fascinating.
#10:38 Narrator: Pfizer wanted to include claims about chemical imbalance in its product information. UK regulators said, that would be “inappropriate information” and asked for it to be amended to “reflect the current state of knowledge, Pfizer accepted the claim was “controversial.”
#10:59 Professor Joanna Moncrieff: It really confirms that there was no consistent evidence in the eighties when this message started to be promoted that there was a serotonin deficiency. But the pharmaceutical industry eventually decided that that didn’t matter and that they could go ahead with this message anyway. Gosh.
#11:22 Narrator: The role of serotonin in depression is still contested. But a review of decades of research led by Professor Moncrieff and published last year found no consistent evidence low levels are linked to depression.
#11:39 Professor Joanna Moncrieff: People were absolutely shocked to find out that, in fact, that these ideas were not proven scientific fact. They were merely ideas, that had never been proven. If you’re told we don’t know what’s going on in the brain. But we’ve got this drug that actually will change or modify you brain in some way. We don’t quite understand how, that’s a much less attractive prospect.
#11:59 Narrator: Despite the lack of evidence for the chemical imbalance claim, Panorama has discovered it remains on half of all current SSRI antidepressant patient leaflets. The UK drug regulator, the MHRA, approves patient leaflets. It says there are, “Several theories on the cause of depression.” And that leaflets should only ever be “supplementary to the explanation provided by the prescriber.”
#12:29 Professor Tony Kendrick: It’s only in recent years that we’ve realised that there isn’t that much evidence for any deficiency of serotonin. We really shouldn’t be talking about chemical imbalance. We shouldn’t be talking about serotonin deficiency. We don’t really understand exactly how these drugs work. But it is not as simple as that.
#12:48 Narrator: The Royal College of GPs says it is important patients wanting to stop or reduce their antidepressant speak to their doctor first. And that stopping their medication suddenly could be “very uncomfortable and potentially dangerous.”
#13:07 Audrey S. Bahrick: When I was taking Prozac I was energised, I felt sharp, I was in a good mood. I had felt more confident.
#13:19 Narrator: Prozac made Audrey feel better in herself. But something else was going on too.
#13:27 Audrey S. Bahrick: I was almost immediately sexually numbed. Within a day my genitals were numb. I was very surprised. I looked at the product insert literature and saw that sexual side effects were very unlikely. And certainly I had never heard of numb genitals.
#13:49 Narrator: Prozac patient leaflets in the US at the time warned small numbers of people might experience reduced libido, sexual dysfunction, and infrequent “impotence.” But no mention of numb genitals. And the numbing sensation wasn’t just physical.
. . . Prozac: . . . 4% decreased libido . . . 1.9% sexual dysfunction . . . infrequent impotence
#14:05 Audrey S. Bahrick: I think my range of feelings was . . . was somewhat blunted. And it’s kind of a mixed bag because if your deeply depressed or highly anxious, if you can take the edge off those extremes, that can be helpful. Unfortunately, I was left with being able to feel more intensely distressed than intensely elated.
#14:33 Narrator: It’s not known how SSRIs cause sexual or emotional numbing, but the two maybe linked.
#14:39 Professor Joanna Moncrieff (Professor of Psychiatry University College London): All antidepressants to some extent seem to have the property of numbing emotions and in some cases it seems this effect seems to be associated with our ability to cause sexual dysfunction.
#14:57 Narrator: Despite drug companies originally saying sexual side effects weren’t common, studies now suggest they affect at least a third of patients while they’re taking SSRIs.
#15:09 Audrey S. Bahrick: I felt confident and well energised and therefore I thought it was an acceptable temporary trade off to be so sexually numbed. There was a particular person that I was Interested in dating. I went off the medication with the expectation that my sexual interests and feelings would . . . would resume as before. I was very confused when things didn’t change. It was very, very hard on the relationship. And you know, I don’t . . . I don’t blame him for wanting to move on. I get it. I stayed fairly hopeful all that time. I thought being healthy, eating well, could help me resolve this. But nothing did. . . nothing did. You know I continued to hope for months and then years. It’s been 27 years.
#16:15 Professor David Healy: We don’t actually know why the sexual problems with these drugs could persist after the drugs were halted. In terms of what serotonin does to us, we . . . It’s extraordinary. We understand so little.
#16:43 Mark Horowitz: A few times over the years, I had come off my medication thinking like I don’t need it any more. And all those those times I felt bad afterwards and concluded that I was better on the medication.
#16:57 Narrator: Mark Horowitz had been taking antidepressants for 15 years. He was training to be a psychiatrist and studying antidepressants for a PhD when he tried to stop again.
#17:11 Mark Horowitz: It led to complete havoc in my life. So, I . . . I had trouble sleeping. I would wake up in the morning in full panic, like I was being chased by an animal, like I was on the edge of a cliff. And that panic wouldn’t abate for hours, until the late evening. I took up running, ten kilometres a day. I ran until my feet bled because it gave me a slight reprieve from that panic sensation.
#17:40 Narrator: Mark knew he wasn’t addicted but he felt he was experiencing withdrawal.
#17:48 Mark Horowitz: So antidepressants are not addictive. Addiction is normally thought of as something extra, craving, compulsion, a focus on the drug, and also a euphoric high. When you stop a drug that you’ve become adapted to, your body and brain will miss the drug, and that’s what causes withdrawal symptoms.
#18:09 Narrator: Nothing in his medical training had prepared him for what was happening.
#18:12 Mark Horowitz: As someone that had trained in psychiatry . . . Was training in psychiatry that had taken antidepressants and had studied antidepressants in my PhD, I thought that I knew everything there was to know about antidepressants. And what I quickly worked out was that I knew almost nothing. And if I had had no understanding then the public had surely even less.
#18:33 Narrator: SSRI antidepressants were launched at a time of growing concerns about addiction to older drugs know as benzodiazepines. These sedatives had bee widely prescribed to treat anxiety and other mental health issues.
# Professor Joanna Moncrieff: This really became a worldwide scandal and brought the prescribing of drugs for mental health problems or emotional problems into disrepute.
#19:02 Archive Reporter: This latest warning about benzodiazepines comes at a significant time just when the pharmaceutical companies are producing a new generation of drugs which they claim will not be addictive.
#19:14 Narrator: This new generation of drugs were the SSRI antidepressants.
#19:19 Advert 1: I am always thinking something terrible is going to happen. I can’t handle it.
#19:22 Advert 2: You know your worst fears. You know, the what ifs and I can’t control it and I’m always worrying about everything.
#19:28 Narrator: Ad campaigns in the US stressed they could easily be stopped.
#19:33 Advert 3: Paxil is non habit forming, I’m not bogged down by worry any more, I feel like me again, I feel like myself.
#19:42 Professor Joanna Moncrieff: From the beginning, the SSRIs were marketed with the message that they were not addictive, like the benzodiazepines, and that they were relatively safe.
#19:47 Narrator: And it wasn’t just one manufacturer. The makers of the three biggest selling SSRIs all said similar things.
#19:50 Prozac Saleswoman: When you stop taking Prozac. You don’t have any reaction after you’ve been taking the medication.
#20:04 Narrator: Depression can be a debilitating condition.
#20:07 Zoloft Salesman: Zoloft is an effective antidepressant that is well tolerated
#20:15 Narrator: And both the pharmaceutical industry and the medical profession wanted to rebuild confidence in drug treatments after the scandal of benzodiazepines and the side effects of older antidepressants.
#20:23 Professor Wendy Burn: At that time people were not getting treatment for depression. Very few people were actually getting antidepressants and there were lots of people who were just thinking that they had to live with it. GPs at that time were reluctant to prescribe them, probably, partly because of the older ones having so many side effects.
#20:45 Narrator: The Royal College of Psychiatrists and GPs with funding from the pharmaceutical industry ran an awareness campaign in the 1990s called “Defeat Depression.”
#20:56 Professor Joanna Moncrieff: This is the message that the Defeat Depression campaign came out with. Patients should be informed clearly that when antidepressants are first prescribed that discontinuing treatment in due course will not be a problem.
#21:10 Narrator: Professor David Taylor is chief pharmacist at one of the UK’s leading mental health hospitals, The Maudsley in South London.
#21:20 Professor David Taylor (Head of Pharmacy Maudsley Hospital): When we started with SSRIs, we had the idea that they were effective, and we were aware that they caused short term side effects.
#21:31 Telephone Receptionist: Hello, medication helpline.
#21:34 Narrator: The Maudsley ran a helpline in the 90’s for people taking psychiatric drugs.
#21:42 Professor David Taylor: It was striking that we got so many calls from people who were having quite severe problems stopping antidepressants, and that those problems seemed to go on for weeks or months. I remember we . . . we debated whether or not we thought that it was possible for those withdrawal effects to last that long. Or was it the case that . . . That it was some kind of psychosomatic disorder.
#22:08 Narrator: Before the drugs were launched, they were tested by manufacturers in clinical trials to assess safety and effectiveness. In early trials withdrawal symptoms weren’t closely studied.
#22:14 Professor David Taylor: To my knowledge, this wasn’t looked at particularly carefully in the trials that were done. You only needed to do studies for six weeks. So, we might not have seen withdrawal after that short duration of use.
#22:30 Narrator: For many drugs, the longer you take them, the more likely you are to experience withdrawal when stopping.
#22:45 Professor David Taylor: Medicines are licensed before long term studies have been done. And again, this is about balancing the need to get effective medicines to patients and the risk of discovering something after we’ve licensed those medicines.
#23:02 Professor Joanna Moncrieff: There are very few trials that have lasted for longer than six months and almost none that have lasted longer than a year. Really, we can say that everyone who takes these drugs for more than a few weeks is taking part in a huge, unregulated experiment to find out what the long term consequences of doing this are.
#23:25 Narrator: Panorama has discovered as evidence of withdrawal symptoms grew one pharmaceutical company wanted to keep what it knew to itself.
#23:35 Interviewer: So can I get your take on a few of these documents?
#23:38 Narrator: James Davies is a psychologist and campaigner on psychiatric drug harms. He’s looking at a confidential Pfizer memo from 1996. In it, staff discuss what the company will tell regulators in Norway about its drug sertraline.
#23:51 James Davies: It says we should not volunteer to describe the withdrawal symptoms, but have an agreed list prepared in case they insist. So, some of the withdrawal reactions they are listing here, we’ve got sensory disturbances, sweating, nausea, insomnia, tremors agitation, anxiety. It’s quite clear from this document they know that these effects exist, that they are hugely problematic. But this isn’t translating often into the information that patients on the ground were getting, presumably because it would affect the economic profile of these medications.
#24:46 Narrator: Pfizer says its been “monitoring and reporting all adverse event data to the licensing authorities in line with its legal and regulatory obligations and updated sertraline labelling as required.“
The MHRA, the UK’s drug regulator, said in 2003 it asked manufacturers to “conduct retrospective analyses of their clinical trial data.” It says it “. . . led to more detailed information” on “withdrawal” being added to SSRI labelling.
#25:19 Professor Jerry Rosenbaum: I’m Jerry Rosenbaum. I’m a professor of psychiatry at Harvard Medical School.
#25:26 Narrator: During the early 1990s, doctors at one of America’s most prestigious hospitals also began noticing withdrawal symptoms.
#25:35 Professor Jerry Rosenbaum: We had some pretty dramatic cases in our clinic of people with emergency room visits. We saw people have these symptoms, it was pretty clear.
I think at the time we thought it was rare.
#25:47 Narrator: One of the professor’s team was working on an industry funded trial for a new antidepressant that also targetted serotonin.
#25:53 Professor Jerry Rosenbaum: He did something I guess the drug company didn’t necessarily approve of, which is after the study was over, he followed the patients as they discontinued and published the paper about the symptoms that emerged during that period.
#26:07 Narrator: They published data (American Journal of Psychiatry, 1997) showing that 78% of those who’d taken the drug (venlafaxine) for eight weeks had some withdrawal symptoms within three days of stopping. Professor Rosenbaum went on to publish a study of three other antidepressants.
. . . Patients Experiencing Withdrawal Symptoms . . . 14% Prozac . . . 60% Sertralin . . . 66% Paroxetine
For two of them, sertraline and paroxetine, more than half of patients who’d taken the drugs for between four months and two years experienced withdrawal symptoms when they stopped.
#26:36 Professor Jerry Rosenbaum: The interesting thing is like in all of psychiatry, there was tremendous variation. I mean, there is a small group who had terrible effects in a large group of people who didn’t notice it. You know it’s something that doctors needed to be aware of because some of the cases that we saw were of people who were told there’s no problem stopping these medicines.
#26:52 Narrator: Highlighting evidence of withdrawal symptoms didn’t go down well with the wider medical profession.
#27:00 Professor Jerry Rosenbaum: It wasn’t a message that despite our, you know, position in this august institution got out very well. I also personally got some negative feedback from colleagues about focussing on that issue. Saying that I was an adverse force for the field, that we worked so hard to get antidepressants, you know, acceptable.
#27:24 Narrator: Pfizer no longer holds the license for sertraline. GlaxoSmithKline still makes paroxetine. They both say patients shouldn’t stop treatment abruptly. Any decision to stop should always be taken in close consultation with your doctor. With limited research available, doctors were learning about antidepressants through experience. For the Maudsley’s Professor Taylor it was his own. He’d been taking antidepressants himself.
#27:58 Professor David Taylor: I stopped taking antidepressants more than 20 years ago now, and I had in mind mild, transient, short lived and it was anything but. It was really quite an unpleasant experience, and that’s probably an understatement. I was quite shocked by it. I gained from the experience and was better able to appreciate what other people were telling me. In the mental health sphere, we’re quite good at making the same mistake more than once. And I suspect people felt that we wouldn’t let that happen again. We wouldn’t allow an introduction of a group of drugs which seemed to work really well but then later found that it was difficult for people to stop them. But that has pretty much what’s happened with SSRIs.
#29:01 Trish Mathews: I think I was probably 18 months down the line of taking the antidepressant, when I thought, “I’m fine. I feel fine. I think I can come off this.”
#29:15 Narrator: 23% of women in England are now taking an antidepressant. Trish first tried stopping hers in 2000.
#29:21 Trish Matthews: Within 24 hours I felt absolutely dreadful. I couldn’t hardly lift my head. I was, you know, it was like the whole . . . Felt like my blood pressure dropped in my boots. I could hardly function basically. I think probably in my mind that it was all my, the symptoms, coming back, that I must have been worse than what I thought I was. And I rang the doctor and she said, “ I think you have to go back on it.”
#29:53 Narrator: Withdrawal symptoms can be similar to those of depression and anxiety. They are sometimes mistaken for a return of the condition the drugs were prescribed to treat.
#30:02 Professor Tony Kendrick (Professor of Primary Care University of Southampton): Change in mood, change in sleep, anxiety, panic those – kinds of symptoms are quite common. There are also physical symptoms. So dizziness, changes in digestion, strange physical symptoms which people call brain zaps. Because of this overlap it is often quite difficult to know in the early stages of coming off an antidepressant whether a person is simply getting withdrawal symptoms or they are becoming depressed.
#30:39 Trish Matthews: So this is the pattern really for the next 20 years coming off for a short time and then having to go back on again
#30:39 Professor Tony Kendrick: The problem for many GPs, and I do sympathise having been a GP myself, is that if you start to reduce the dose and somebody comes and tells you that they are feeling depressed, you may be tempted to say, well that this just proves you need the antidepressant. And we won’t try and reduce it again. Because you are fearful that they will get a relapse.
#31:16 Narrator: There are now more than 8 million people in England taking an antidepressant including SSRIs. Antidepressants are also prescribed for other conditions including chronic pain and obsessive compulsive disorder. Figures obtained by Panorama show more than two million people (Source FOI to NHS Business Services Authority, April 2023 (figures for Jan 2018 – Dec 2022)) have been taking them for 5 years or longer.
#31:37 Professor Tony Kendrick: Antidepressant prescribing has been increasing year on year since the early 1990’s. And it is the longer-term prescribing that is driving the increase. And it just keeps going up.
#31:53 Professor Wendy Burn: People are staying on antidepressants for longer and longer. And we don’t have long-term studies that support that. And you know, the drugs do have side effects. You shouldn’t just stay on them without ever thinking about coming off them. I would suggest anyone who is on an antidepressant should have their treatment reviewed every 6 months. Again, you must never stop an antidepressant without discussing it with your doctor.
#32:17 Archive Presenter: Imagine a world where every word ever written could be viewed instantly in your home via an information superhighway
#32:25 Narrator: By the early 2000’s the Internet began connecting people who were experiencing problems with their drugs
#32:34 Adele Framer: I already knew about using the web I was an early adopter of the Internet.
#32:39 Narrator: Adele Framer was working as a software consultant before she says antidepressant withdrawal forced her to quit. Her doctors thought she was relapsing
#32:49 Adel Framer: It was clear to me that I was not having a relapse because I had never experienced those symptoms before. They were really strange
#33:01 Narrator: Adele set up a support group called “Surviving Antidepressants”
#33:06 Adele Framer: Almost everybody that comes to my site has been told they have relapsed. They have been told they are withdrawal symptoms they are depressed anxiety or whatever. This is a very universal experience.
#33:19 Audrey S. Bahrick: The internet changed everything for people who were experiencing psychiatric drug harms that were undocumented. We found each other. All along I believed I couldn’t be alone but I never had any evidence that I wasn’t alone. That was a very lonely journey and it became progressively more isolating. Mostly, I just wanted to be believed. Then in one of my routine searches on the Internet I found, oh, my gosh, some one that had started a support group for people who had enduring sexual dysfunction after stopping SSRIs
#34:10 Narrator: Audrey began publishing some of the first ever academic papers on her condition. It has become known as PSSD, Post SSRI Sexual Dysfunction.
#34:22 Audrey S. Bahrick: A large part of my motivation was to put out some papers into the world that could be downloaded and brought to their physician or brought to their prescriber. I don’t want anybody to ever have to go through, what I’ve gone through.
#34:48 Mark Horowitz: So this is me writing in May 2019, “Hello, I feel so depressed and depersonalised and fatigued, at times I am not sure what to do with myself. If it is withdrawal then I really hope it can’t last too much longer because it is sapping my will to keep going.” So that reminds me of how upsetting it was. I’m in a better place than I was then, but it was a very hard process. It’s a bit upsetting to read.
#35:23 Narrator: At the time UK guidelines advised steadily reducing or tapering an antidepressant dose over 4 weeks. They said withdrawal should be generally mild and short lived.
#35:36 Narrator: Mark had already tried to stop his antidepressant but couldn’t, so he looked for advice online and found Adele’s site.
#35:45 Mark Horowitz: Online, I was getting advice from retired engineers and firemen and housewives. I was clear who the experts were. People said it took months to come off. It took more than a year for some of them, and it took several years for quite a few of them.
#36:01 Adele Framer: A lot of people had experienced withdrawal from these regimens where the doctor would tell you to cut in half then half a gain. So we knew that that kind of tapering was not working. So we figured let’s do 10%. So that became a sort of a word of mouth type of recommendation. Where gradual tapering meant 10% reductions.
#36:27 Mark Horowitz: I could see a lot of people coming down by very small amounts of their drug as they got down to lower doses, by smaller and smaller amounts. And the reason they were doing that was because they felt the withdrawal symptoms became more pronounced at lower doses which was what I think is a bit surprising. You might think you are on less of the drug, it would be easier to come off. But I heard it again and again people saying it is these small doses that are particularly hard to come off.
#36:55 Narrator: Many drugs don’t come in such small doses. So some people who were struggling found creative solutions
#37:02 Mark Horowitz: They were grinding up tablets with nail files and measuring them with jewellers’ scales. They were making liquids by crushing them and making liquids and using syringes to measure them out. They were opening up capsules to count beads. As I followed their guidelines and slowly came off, it was a lot easier than when I came off more quickly. So tiredness, memory trouble, concentration issues started to improve which was, I should say, you know a huge gift to me.
#37:28 Narrator: Mark then teamed up with Maudsley’s Professor David Taylor together they wrote the first (05-Mar-2019 published on line Lancet Psychiatry) paper on how to ease withdrawal symptoms by tapering the dose very slowly. It was published thirty years after the launch of Prozac.
#37:46 Mark Horowitz: The way I see it is, you know, half the field is empty. In psychiatry, all the papers all the textbooks, all the research is all about how to start the drugs. There is almost no research and guidelines how to stop the drugs. To me it is the same as allowing cars to be sold without brakes. We should know how to start the car and how to stop it.
#38:13 Luke Montagu: I remember very clearly when I first went into severe withdrawal looking it up on the Internet and I was absolutely horrified because I saw that so many people were suffering the same thing. And I didn’t know about any of this. I hadn’t been warned.
#38:28 Narrator: Luke Montagu took Prozac for more than a decade.
#38:33 Luke Montagu: When I stopped the Prozac and I had these severe withdrawal reactions, I thought that was evidence that I was really ill and that I needed the drug in order to survive. I used to think of myself as being held together by pieces of chemical string. I remember thinking about that at the time, and we just didn’t know that it was withdrawal. And of course that then led to the misdiagnosis of more things that were wrong with me for which more drugs were added.
#39:05 Narrator: By now he was on another antidepressant. When Luke tried to stop taking all the drugs a few years later, he says the withdrawal was so bad, he couldn’t leave home for three years.
#39:17 Luke Montagu: I could at least read online and I could go to websites. And it was really the volume of people online suffering in the same way, with the same story. A story of being left on them long term, coming off them, suffering horrendous withdrawal, and the critically, having that withdrawal denied, having the harms denied by the doctors. And that was my story, exactly that had happened to me. And that made me think that really there was a profound problem with the system, and that if I was going to recover, I was going to try and do something about that.
#39:58 Narrator: Luke contacted the psychologist James Davies
#40:03 Luke Montagu: He and I got together and we thought, what can we do to help? The critical thing was to get to the experts because ultimately, if things were going to change, we needed to change the opinions of experts.
#40:13 James Davies: ( Author “ Cracked: Why Psychiatry Is Doing More Harm Than Good” There was something that always perplexed us, and it was this massive disjunct between what the guidelines were saying, that antidepressant withdrawal is usually mild, self-limiting, resolving over about a week, and what we were encountering online.
#40:30 Narrator: James and Luke wrote a letter to the Times newspaper (23-Feb-2018 Stigma And Efficay Of Taking Antidepressants), saying antidepressant withdrawal can be disabling for many patients. It was 2018, and it started a public debate with the then-president of the Royal College of Psychiatrists.
#40:47 Professor Wendy Burn: I replied, saying that antidepressants did work, and also talking about withdrawal and saying that withdrawal wasn’t really a problem. And I didn’t really expect anything to come of that. It was really quite a kind of casual Sunday letter to send a letter to the Times, which when you’re president you do quite a lot. But people got really upset and really angry.
#41:08 Luke Montagu: I think Wendy found herself in a really difficult position, because on the one hand, she had a lot of members, a lot of psychiatrists who had promoted this story that antidepressant withdrawal was mild and short-lived. And then at the same time she had all of these patients and campaign groups coming to her and saying, “This isn’t true at all.”
41:34 Professor Wendy Burn: I was realising that the college had got it wrong. So then we had to work out how to put things right.
#41:42 Narrator: She asked two experts who’d both experienced withdrawal themselves to help.
#41:49 Professor Wendy Burn: We had a lot of input from different people. But two of the big influences were Professor David Taylor and Dr Mark Horowitz.
#41:57 Narrator: They produced a patient information leaflet on withdrawal (Stopping Antidepressants – Royal Pharmaceutical Society) and how to taper the dose.
#42:03 Professor Wendy Burn: We thought, if patients are getting withdrawal symptoms, they can show it to their doctor and say, “Look, the Royal College of Psychiatrists says that withdrawal is a thing and this is how you might experience it.”
#42:14 James Davies: For us, it was a significant U-turn. This was the first time a major psychiatric organisation like the Royal College of Psychiatrists had stepped up and acknowledged a problem that had been there for a long time. We felt patients on the ground had been vindicated.
#42:32 Professor David Taylor: I think now people accept that a small minority of people will have significant difficulty in stopping antidepressants and they’ll get withdrawal symptoms which are severe. In as much as they are difficult to tolerate and they can go on for a very long time.
#42:52 Narrator: Professor Burn is no longer president of the Royal College. She’s still a practising psychiatrist and personally regrets that severe and long-lasting withdrawal wasn’t recognised sooner.
#43:06 Professor Wendy Burn: I can’t really explain why it took so long. Perhaps partly because of the overlap between relapse and withdrawal. I don’t know, I can’t really explain it.
#43:17 Interviewer: Do you feel like there’s an apology that should be made?
#43:20 Professor Wendy Burn: I guess, yes, if there’s anybody watching who gone through withdrawal and it wasn’t recognised, then I’m very sorry.
#43:29 Narrator: In the US, Audrey had been trying for years to get recognition for the serious sexual side-effects of SSRIs.
#43:42 Audrey S. Bahrick: I vigorously reached out to dozens of health journalists, every major newspaper in a big city. I wrote to them. All those efforts resulted in just a couple nibbles, but no follow-through.
#43:55 Narrator: It appeared no one wanted to listen.
#43:42 Dr David Healy: You know, you think to yourself, sex, the media will be interested in sex. It was just the opposite. You know, you mention sex and the media shutdown. The message has tended to be, “well if we raise something like this, it’s just going to scare people away from treatments that might help them.”
#44:18 Narrator: By 2019, there were 93.6 million prescriptions in the UK for all types of antidepressants. The number had almost doubled in a decade. Now even rarer SSRI side effects were being more widely discussed. People suffering with post-SSRI sexual dysfunction also began to find each other and raise awareness.
#44:47 PSSD Young Male 1: I think everyone who suffers from PSSD, me included, wants people to know what this medication can cause, what it can do to you. Because we weren’t warned.
#44:59 Narrator: The UK’s medicines regulator has been receiving reports of persistent sexual side effects since 1991. Two internal reviews later concluded there was insufficient data to issue any warnings.
#45:12 Professor Joanna Moncrieff (Professor of Psychiatry University College London): We don’t know much about the prevalence of PSSD. There haven’t been any systematic surveys. We don’t know how common it is, but what I would say is that even if it is quite uncommon, antidepressants are being used so commonly now that that would still amount to a substantial number of people.
#45:37 Narrator: The regulator says it’s now received 403 reports of PSSD. On social media there are many more.
#45:47 PSSD Young Male 2: It’s absolutely horrendous. It flipped whatever plans and future I had for my life upside down.
#45:56 PSSD Young Female 1: I almost laugh at the fact that I used to think I was suffering until I got this.
#46:01 PSSD Young Female 2: I require medical attention, but there is no medical assistance to be found for this condition as it is under reported and under studied.
#46:07 Dr David Healy: It’s probably not unique, but probably relatively rare that you get a problem as serious as this that’s put on the medical radar by the people who have the problem rather than the professionals.
#46:19 Narrator: An acknowledgment that sexual side-effects can persist after stopping the drugs was finally added to SSRI patient leaflets in 2019.
#46:31 PSSD Male: And I just feel like I’ve been completely done over by the medical community. They’ve updated their packaging but it still doesn’t reflect the fact that you can be permanently chemically castrated.
#46:41 Dr David Healy: To this day we’ve got doctors simply not believing people when they say that this can happen to them. So that’s still the experience of a lot of people. It adds to the awful problem. This isn’t saying that you won’t recover. We need to hang to the hope of recovery and the fact that there is more research happening. So, this hope is hopefully getting stronger.
#47:07 PSSD Young Female 3: All I can do is just hope that my body knows what to do and it can go back to the way it used to be before I took this medication.
#47:20 Narrator: In 2021, the number of antidepressant prescriptions in the UK reached 100 million. With one in seven of us taking them, understanding the benefits and the risks is more important than ever.
#47:37 Professor David Nut (Professor of Neuropyschopharmacology): They’ve actually saved the lives of many hundreds of thousands of people. They’ve allowed people to cope with what is becoming more and more stressful society. And it might be a lot worse without them.
#47:53 Narrator: While many doctors report their patients often improve on antidepressants over the last 15 years, how well they work has been increasingly called into question.
#48:07 Erick Turner: My name is Erick Turner. I’m a former FDA reviewer and before that a research fellow at the National Institute of Mental Health.
#48:16 Narrator: When Erick Turner joined the US regulator, the Food and Drug Administration he’d been prescribing antidepressants as a psychiatrist. He’d also researched them as an academic.
#48:28 Erick Turner: When I came to the FDA, it was the spring of 1998. I thought I knew all about how well drugs work. And once I got there, I found out that I didn’t know much of anything.
#48:47 Narrator: Working at the FDA, Dr Turner got to see confidential drug company data from their clinical trials. Those trials measured antidepressants’ effectiveness by comparing the drug with a dummy pill, or placebo.
#49:01 Erick Turner: And right away, I saw a number of, you know, negative studies where the drug didn’t beat the placebo. And I was, you know, baffled by, you know, how could this be? That was a shock to me, because looking at journal articles and psychiatry journals it appeared that the drugs always were superior to placebo and I had no reason to think otherwise.
#49:23 Narrator: To gain approval from regulators companies usually need to show at least two successful trial where their drug beat placebo by a significant margin. What Erick was seeing was how many attempts companies needed to achieve that.
#49:37 Erick Turner: And then I spoke with my boss about this. I said, “What’s going on here? What’s with all these negative studies?” And he kind of chuckled. “Oh, yeah, basically it happens all the time. Yeah, but you know, 40% of the time these studies will fail.” And, yeah, I didn’t see the humour in that.
#50:00 Narrator: Erick Turner began scrutinising studies published by the drug companies and their trial data only the FDA got to see.
#50:09 Erick Turner: If you look at the FDA data, you find out that the fact is, that it’s roughly half the trials are negative, it did not beat the placebo, and only half were positive.
#50:19 Narrator: In 2008 he published the first evidence of how many antidepressant trials were unsuccessful. He found the effectiveness of a range of antidepressants had been overstated by between 11% and 69%.
#50:34 Erick Turner: If you exaggerate the benefits, make the drug look more effective than it really is, by suppressing negative studies, then that’s going to alter the risk-benefit ratio right there. By that time, clinicians have been prescribing Prozac and Zoloft and Paxil for many years, and they probably were quite comfortable with them and felt that they then knew what they needed to know about these drugs.
#51:06 Narrator: In 2018, a leading academic and his team published a review that had taken six years to complete. Their aim to settle the debate over the effectiveness of antidepressants.
#51:20 Professor Andrea Cipriani (Department of Psychiatry, University of Oxford): Part of the controversy is the influence of industry in this area, because in the past we know that there was a push for prescribing drugs and trying to market these drugs as a quick fix and easy solution, and they are definitely not.
#51:40 Archive: Scientists think they have finally answered the question. In a huge study, they analysed more than 500 clinical trials, including previously unpublished data held by drug companies.
#51:53 Professor Andrea Cipriani: This was the largest study ever carried out in mental health.
#51:57 Narrator: Professor Cipriani’s analysis of trials involving people with depression showed, on average, more improved substantially with an antidepressant than a placebo.
#52:06 Professor Andrea Cipriani: We know that antidepressants are better than placebo, but the difference is about 15% from placebo. So it’s not a huge, dramatic difference.
#52:17 Narrator: Around 40% of patients improved on placebo. Around 55% improved on the drug, giving a 15% difference between the two.
#52:29 Professor David Nut: The difference between placebo and active treatment can be the difference between life or death, if it happens to be that it gets you above being suicidal. We have to look at the benefit risk. The benefit risk for SSRIs actually you know, is really rather remarkable, I think.
#52:48 Professor Andrea Cipriani: It is an average effect, but it doesn’t reflect what is the reality, which is some people don’t respond at all and other people respond to a lot of medication. This is why we need to get rid of the one-size-fits-all approach.
#53:05 Narrator: Professor Kendrick co-wrote the latest NHS guidelines. For adults with more severe depression, antidepressants remain an important treatment option. But in less severe cases, GPs are now recommended not to prescribe antidepressants unless patients request them.
#53:25 Professor Tony Kendrick: We now teach students and trainees to hold off on prescribing antidepressants if possible. For mild depression most people get better, whatever you do over a few months. So, if you can hold off, then you don’t start people on antidepressants and then they’re not going to get problems further down the line trying to come off them.
#53:43 Narrator: The companies behind the most widely used SSRIs in the UK say that many clinical trials and studies by independent researchers show their drugs are effective, that they been taken by millions worldwide for potentially devastating and sometimes life-threatening conditions and that they’ve helped patients globally. They say as with all medicines, SSRIs have potential side effects which are clearly stated in the prescribing information. They say their drugs are considered to be safe, with a positive benefit risk ratio, by doctors, patients, and regulators around the world.
#54:34 Narrator: Trish has been slowly tapering off her antidepressant for three years.
#54:37 Trish Matthews: I feel that the last dose of my SSRI will probably be within about the next two to three weeks. I do think there will be traces of issues for a while and I’m prepared for that. I just hope, maybe a year’s time or something like that, I can think of you know, that’s all gone and I’m sort of . . . This is me as I am, you know. So that’s, that’s what I hope for, yeah definitely.
#55:19 Narrator: Mark’s now been reducing his dose for five years. He’s hoping to stop completely in the next few months.
#55:28 Mark Horowitz: The history of psychiatry is of drugs being put onto the market, being told that they’re effective, there’s minimal side-effects and they’re easy to stop. And again and again, it has turned out, years later, that none of those things are true.
#55:49 Dr David Healy: What matters are the regulatory conditions. And at the moment, to my knowledge, there isn’t a regulatory demand that new drugs are tested in terms of the long, very long-term use and the likely long-term effects or the effects of withdrawing them.
#56:04 Narrator: Millions of people around the world continue to take SSRI antidepressants. For many, the benefits still outweigh the risks.
#56:13 Professor Wendy Burn: I believe very firmly, as does the college, that antidepressants are helpful. And I’ve seen, throughout my long and extensive career, I have seen people benefit from antidepressants. I see lives being saved by them.
#56:35 Professor Jerry Rosenbaum (Professor of Psychiatry): I think that, you know, yes, the SSRIs will be history at some point. I think they were more helpful than not. But not everybody was helped, for sure. Lot’s of people weren’t.
#56:47 Narrator: It’s more than thirty years since the wonder drugs of a generation promised safe, effective treatment for depression. But the story has turned out to be much more complicated. And for those who’ve been harmed by them, it’s been a long hard fight to be heard.
#57:11 Audrey S. Bahrick: So you’ve asked what I think my life might have been like if this hadn’t happened. It’s a really painful question. It’s really hard to contemplate. It’s left an indelible mark on my life that’s been huge. But nobody’s life is predictable. I’ve retired now and threw out a lot of my files. I thought I might have been done.
#57:44 Interviewer: And how does it feel talking about it now?
#57:46 Audrey S. Bahrick: I’ve been waiting for you to show up for 15 years. Thank you for coming. It’s amazing.
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