BOB FIDDAMAN
[Andy Miles] Hello and welcome to Akathisia Stories, a podcast co-production of MISSD and Chicago's Studio C.
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 author, blogger, researcher, and self-described humanist and humorist Bob Fiddaman. His eponymously titled blog has focused on drug company and regulatory malfeasance since making its debut in 2006. At the time, Bob, an Englishman living in Birmingham, was taking himself off of Seroxat, a GlaxoSmithKline-produced antidepressant known here in America as Paxil. After making a protracted attempt at tapering off of the drug, he eventually decided to go cold turkey, a course of action he strongly advises against.
[Bob Fiddaman] "Within 24 hours, I was pretty much in a fetal position, you know, suffering stomach cramps, head zaps, intrusive thoughts. It was pretty bad. And it took about three months of absolute torture to get through to the other side, but I pretty much knew once I did reach the other side — because I was getting all my empathy, for one; that was coming back, so I’d be listening to music that I’d never really listened to before and really focus in on the lyrics. So, you know, my type of music is rock, AC/DC in particular. I started listening to the Dixie Chicks’ “Travelin’ Soldier,” and was listening to the lyrics and the story and I was crying, and then Martina McBride “Concrete Angel.” I was just crying my eyes out at these lyrics. So for the first time in a very long time I was able to sort of, like, feel things again, feel emotion again."
We'll have Bob's full story in a moment.
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Bob Fiddaman was born in London in 1964, the youngest of three children. In 1967, his family moved to Birmingham where he has lived since, though he now splits his time between England and his adopted home in Panama. Bob married in 1987, divorced in 2006, and has three grown children. In 2006, he created the SEROXAT SUFFERERS STAND UP AND BE COUNTED blog, later changing the name to FIDDAMAN BLOG. Bob has met with the U.K.'s Medicines and Healthcare products Regulatory Agency on a number of occasions but has now ceased contact with them. He has also been a thorn in the side of drug manufacturer GlaxoSmithKline, reporting on numerous inquests and wrongful death lawsuits brought against the company by bereaved families. In our interview, you'll hear about some of these, including Dolin v. GSK, the 2017 trial that MISSD founder Wendy Dolin was the plaintiff in. Bob is the author of a 2011 memoir called The Evidence, However, Is Clear: The Seroxat Scandal, and has recently finished a science fiction novel called No Other Man. [Bob Fiddaman: “It's about angels, it’s about numerology, it’s about demons and it’s about love.] We spoke over Zoom.
AM: So you’re known for your work on your blog. You started it in 2006, and I believe at that time you were on the antidepressant Paxil and struggling to come off of it. So why don’t we start by having you talk about that experience? And you had been on the drug for about six years at that point and had decided that you no longer needed it?
BF: Yep, correct. Yeah, I was prescribed – it’s called Seroxat in the U.K.; it’s called Paxil in the States. It’s important that I mention that because the reason I actually started blogging was because there really wasn’t enough information out there about the Seroxat brand name, and it wasn’t until I stumbled on an article by an American woman about Paxil, which was actually the same drug — that’s when the floodgates opened. That’s when I realized there was thousands of people suffering what I was suffering, which was severe withdrawal on the drug. All I seemed to be getting in searches in the U.K. was how great it was, and these were mainly the drug company websites that I was using. But once I found out the brand name was Paxil in America, I was then able to do searches using that term and stumbled upon all sorts of different stories, lawsuits, and forums where people was helping each other try to get off this particular antidepressant.
AM: Yeah. And why did you originally go on the medication?
BF: I was working for a car company at the time, and I developed osteoarthritis in my hip so could no longer do the duties that was expected of me, so I wanted light duties, you know, to save my hip. In fact, it was the doctor who said, you do need light duties, and also, an orthopedic consultant said, if you continue doing this, it’s going to get worse. The company I worked for at the time wouldn’t oblige and they said, you’ve got to continue doing the job. So my doctor signed me off work. Now, as a result of that, I would still be paid sick pay, but then the sick pay ran out, and the only way to get it back was by going back to work in the same job, but that was causing too much pain. So they stopped my pay and that’s really when the depression kicked in. I wasn’t able to provide for my family. I was married and had three small kids at the time; they’re all grown up now. So that’s when the doctor prescribed me this relatively new blockbuster drug called Seroxat. He knew nothing about it. I knew nothing about it. The only thing that we both knew was what was said on the packaging. You know? And there was nothing about withdrawal issues and nothing about night sweats and everything else that’s associated with it.
When you’re on these drugs – and, you know, I’ve spoken with hundreds of people over the years and they all pretty much say the same thing; you do lose empathy when you’re on them. There’s something that it just strips you of. You know? But there was no emotion. There was absolutely no emotion from me. And of course, as the years went on and when I came off it and did the research on it, I found that it actually kills empathy; you know, you don’t feel any empathy at all, and also, survival instinct, which, if you fall into a swimming pool, your instinct is to swim back to the surface. Well, when you’re on these drugs, I believe a lot of the reasons why you get suicides not just on Paxil but on the other SSRIs is because it kills the survival instinct, so it’s like the foot over the edge of the cliff; the survival instinct kicks in so you step back. Well, when you’re on these, it doesn’t; the survival instinct does not kick in, not for a lot of people, anyway, so they will then take the next step. And I believe that is one of the main reasons why we’re seeing a lot of deaths, suicides, if you like to call it that, on this particular group of medications.
AM: Yeah. So, as you say, you had an awareness that you were, you know, sort of stripped of your normal empathy, but did you attribute it to the prescription that you were on at the time?
BF: No. No. It was really weird because I thought – you know, I just thought, have I become immune to this? Because, you know, the newspapers are pretty much full of bad stories – you know? – and stories like this in particular, and I thought, is it just me getting older and maturing out a little bit, or is it me just in denial and putting stuff like this to the back of my head? Because I don’t want to address it. I don’t want to get angry by it. You know? And then there was other times when I would get really, really angry while I was on it. And that was out of character, as well, for me. I started suffering with noise intolerance. Now, when you’ve got three kids, they will do random things; they will clap their hands or they will turn the volume up on a video game, and just random noises. And these really set me off. It was almost like cymbals crashing. There’s no actual papers on it but when I put a question out to a bunch of people in a support group, a Paxil support group, I was really kind of surprised by the answers. They were all pretty much saying the same thing about this noise tolerance. You know?
AM: So did that contribute to your decision, then, to take yourself off of the medication?
BF: Well, the reason I initially came off – the job issue had been resolved. I’d gone to see a lawyer and the lawyer basically told the car company, this is disability discrimination what you’re doing to this man. And it was decided that they [would] give me early retirement and give me a very, very small pension and also a lump sum of money. Now, that lump sum of money came in handy because I’d gone into debt during my time off work so I was able to fix the house, pay the debt off. And yeah, the reason I actually went to the doctor and said, I don’t think I need this anymore is because these issues had now been resolved.
AM: And did you taper off of it?
BF: Initially, yeah. Initially my doctor had told me to halve a tablet. I was on 40 milligrams a day, which is two 20-milligram tablets. My doctor had told me to take one and a half tablets a day and then go back to two tablets and keep doing it like that. That didn’t work. It just caused me all sorts of problems. And then it was decided that he try the liquid formulation on me, which is a much – you’re able to taper much more slowly on that. But even that was too severe. So he just said, well, OK, come down at your own pace, so I decided round about half a milligram a week. I tried different formulations and the only one that I could – that would agree with me, you know, that would stop me getting the zaps and the anger issues – because you do get angry when you – (snaps) – just suddenly stop an SSRI – was by dropping down half a milligram a week. Now, I did that for a total of about 19 months, and I got down from 40 milligrams per week to 22 milligrams per week. And I’d had enough. I’d had enough of this drug having a hold on me, this regimen every single day. And so I decided to go cold turkey, against my doctor’s wishes. And I’d done all the research on it. I pretty much knew what I was in for and he just said to me – we were emailing one another. He just said to me, keep in touch because, you know, it can be pretty bad.
So I threw the bottles of liquid away, and within 24 hours, I was pretty much in a fetal position, you know, suffering stomach cramps, head zaps, intrusive thoughts. It was pretty bad. But I knew that I had to go through this to get to the other end. Now, I’d never recommend this to anybody. In fact, I’d advise against it. It was just that I pretty much had had enough by that time. You know, I was traveling as well at this time and I didn’t – I was fed up of saying to people at airport what these syringes were for, because that’s what you get; you get liquid syringes, oral syringes, and you put them in your mouth. There’s no actual needles on them. But of course, every time you produce them, eyebrows would be raised and I didn’t want to do that anymore and I thought, you know, I can beat this. And it took about three months of absolute torture to get through to the other side, but I pretty much knew once I did reach the other side — because I was getting all my empathy, for one; that was coming back, so I’d be listening to music that I’d never really listened to before and really focus in on the lyrics. So, you know, my type of music is rock, AC/DC in particular. I started listening to the Dixie Chicks’ “Travelin’ Soldier,” and was listening to the lyrics and the story and I was crying, and then Martina McBride “Concrete Angel” – I was just crying my eyes out at these lyrics. So for the first time in a very long time I was able to sort of, like, feel things again, feel emotion again. And I do remember walking over the park and just looking up at the clouds and just hearing birds sing. And that brought me to tears as well because I’d been in this bubble for six years – I call it the Seroxat bubble – where I was just, you know, going – or just trying to focus on getting off the drug and not allowing anything in.
What you have to remember is I was put on an antidepressant for work-related issues. There was nothing sort of, like, mentally wrong with me, you know, apart from the fact that I was frustrated at work by not allowing me light duties. That’s not a mental illness. And a lot of the times many people are prescribed these drugs for life events, you know. They just can’t handle something that is currently going on in their life, be it a relationship problem, a split, or a job problem, or debt. Often people are put on these and all they’re designed to do is paper over the cracks. They never get to the root cause. And that might seem a good thing for somebody because it’s great to go to bed at night and not have to worry about mounting debt, and again, that does happen. When you’re on these drugs, you tend not to care about anything, including the problems you may have been prescribed the drug for. So in that sense, they work, but it’s not getting to the root problem. You know?
AM: So at what point did you reach out to the British regulator for help?
BF: Yeah, the MHRA, which is the British equivalent of the FDA. I think I may have been off. I may have done the withdrawal and the cold turkey by the time I got in touch with them. I first got in touch with them pretty much when I started writing the blog, so 2006. And I thought, oh, well, these are the people to get in touch with. I hadn’t heard of them, didn’t know of them up until this point, and so when I wrote to them, just asking for some advice on this particular SSRI, yeah, I was getting stonewalled.
AM: And what do you mean by advice?
BF: I just wanted to know if anybody else was suffering withdrawal in the U.K. because I’d already seen that people in America was. And I was kind of naïve back then. I thought, well, maybe the tablets are made different over there; maybe Paxil, although it’s got the same brand name and generic name, Paroxetine, maybe it’s made different. But, of course, you know, that was when I was just starting out on it. And yeah, some of the responses I was getting was – they really wasn’t giving me anything, and so I’d keep asking the same question over and over, and I think they ended up calling me “vexatious,” and I had to Google the word vexatious; I didn’t know what it meant. And I thought, who am I dealing with here? They’re here to serve me.
AM: Serve you. Yeah, exactly.
BF: Yeah. And it was at that point – I’ve always loved writing. You know, I used to write at work and I used to write little comedy sketches, you know, for the management and the workers, and you know, they used to go down pretty well. So I thought, OK, this seems like management here, sort of looking down on a poor little patient. So I kind of took that – some kind of really sarcastic and I lampooned them a little bit. You know? And it was then I thought, well, this is the way to go because it was good release for me; it was helping other people; people were saying, good on you going after them. And then they was actually writing back to me because they were seeing what I was writing and then they tried to be a little bit more open with me without actually opening all of their doors and giving me the truth. So that went on and on for quite a while, until I made demands of them and said, I want to see your CEO, I want to see him face to face, I want to sit down with him, tell him my story, and tell him that there’s other people out there that are suffering in the same way that I did and I don’t want that to happen. And eventually I got that meeting.
AM: So what I’ve gathered is that you had already started the blog at that point and it was more a blog that was documenting your experiences, but then it sort of took a new twist and you became more of, you know, a sarcastic kind of writer, where you were lampooning this government agency.
BF: Yeah. Well, it was that, and then it completely changed for me only a couple years in; I think it was 2008. At the time it was all about me; it was all about, I want to know why you granted a license to this drug and it caused me all these problems. And then I heard a story about Sara Carlin, a young girl from Canada, who actually killed herself on this very same drug. And I followed her story with interest in the Canadian press and then reached out to her father and he got back in touch with me and we just started talking. And I realized then that my god, kids are on this. And with all the problems that I had on it and I thought, how can a young kid go through what I went through; this is terrible. And then I learned that they’re not recommended for children but doctors prescribe them anyway, the off-label prescribing thing, and I thought, well, this is really, really wrong. There was lots of things I was learning as I was going along. You know? And then — yeah, and then that’s when I pretty much became a hard-ass on it, you know, once I realized this was killing kids. More and more people would start getting in touch with me after reading the articles I wrote on Sara. And I thought, you know, something really needs to be – I need to sit down with these people. I knew that I wasn’t going to be able to change the world or anything like that, but I needed them to know how I felt and that this was happening on a huge scale all over the world.
AM: Yeah. So you got interested in this case to the extent that you started covering sort of day by day the developments of the inquest and you were providing sort of an angle on the coverage that wasn’t really found in the commercial press.
BF: Yeah, I was with speaking with Sara’s father every night and it was exhausting for Sara’s dad, Neil, and his wife, Rhonda, because they were going to the coroner’s court every day and, you know, they didn’t expect the coroner’s court to be full of a team of GlaxoSmithKline’s lawyers. This is just a coroner’s court; this wasn’t a trial. So it was really, really exhausting for them and then he was telling me about the witnesses that was giving evidence there, you know, and then I’d researched the witnesses and those that was in favor of Paxil, saying it was a great drug for children. I’d research them and then I’d expose them. I thought, you can’t just get up there in front of a family and tell this family how wonderful this drug is when it’s killed their daughter. And remember, she should never have been given it; it was prescribed off-label. You shouldn’t be putting a family through this, so I’m going to give you a taste of your own medicine. And again, I would find stuff on them that they’d done in the past, and I’d put that up with the day’s events, and that was, you know, to support Neil and to support Rhonda and really for this terrible injustice of this girl that took a rope into her basement, tied it around her neck, and killed herself. And she would not have done that if she hadn’t have been on this drug. It was the drug that made her do it, despite what GlaxoSmithKline say.
Now, this wasn’t a trial, the coroner’s inquest; it was to try and determine what do we need to do about this drug in this particular age group, and in fact, when it was all done, I think they made something like 14 recommendations to Health Canada, which is the Canadian equivalent of the FDA, and to this day, not one of them recommendations has been implemented. I hate the word or I hate it when I see the word “recommendations” because it means nothing. Recommendations mean nothing. You can say, yeah, OK, I accept that and then you can just do nothing about it, you know.
You can’t – suicide or suicidal thoughts – akathisia, for example — (snaps) – can – (snaps) – just be switched on like that and it can be switched off again. You can have an intrusive thought the one minute and then the next minute it goes away. Or you can have an intrusive thought and then you carry out that intrusive thought. It’s impossible to monitor that, so just by saying, making a recommendation that, you know, there should be more monitoring — it doesn’t work like that when you’re taking these drugs. Like I say, it’s just a momentary thing where you can flip. You can’t stop somebody from taking that step over the edge. You can’t do it — virtually impossible.
AM: Yeah. So during the inquest and the discovery that was involved, you know, in this case, was there any mention of akathisia? And was that a term that you knew at that time?
BF: No to both. There was no mention of akathisia at Sara’s inquest and there was no — I wouldn’t have known what the word meant. I’d heard it before but it was just described as feeling like you’ve got spiders under your skin. Now, I’d experienced something like that during my time on Seroxat and a lot of pacing up and down. But I never knew what it actually was, and I didn’t until some years later when the word came out again and that’s because now I was a proper researcher, if you like; I thought, well, I need to know what this is, and that’s when I kind of delved into it and thought, ah, maybe that’s what I had when I was pacing up and down and –
AM: And when you were experiencing those symptoms, was that during the regular course of your taking the medication, or was that only during the withdrawal?
BF: Withdrawal.
AM: OK.
BF: Yeah, it was during the withdrawal. And of course, if you skipped a dose during withdrawal, if you happened to be away or something like that, you know, with friends and you didn’t bring your tablets or your liquid with you, you’d get really jumpy and edgy. And there’d been occasions when I’d gone to the pharmacy and they was out; they had none left. And so as it got worse and worse and worse and when I was withdrawing and think, I need my drugs now, I’d go and pick the prescription up and said to myself, if they haven’t got them in the pharmacy, I’ll probably trash the pharmacy. That’s how bad it was. I would make sure that if they didn’t have them there, then somebody would have to drive in a car to bring them to me while I waited in the shop, and I thought, if they don’t do that, I’ll trash the shop. Now, this is what Seroxat does to you. It makes you really, really angry, and you don’t care about the consequences. You need your fix. You really need your fix. A lot of people don’t – you know, don’t like saying it’s an addictive drug.
AM: Yeah. And then the Dolin case, which you also covered for your blog, also involved GSK and Paxil.
BF: Yeah, what a surprise, eh? (Laughs.) Yeah, well, I’d heard about Wendy Dolin – again, that was just through – I was always on top of things, you know, and so I’d heard about Stewart killing himself and I knew that Wendy was going after them and I think I did write something prior to ever meeting Wendy or prior ever to reaching out to her. I just started, you know, going for it and go, here we go again; here’s another one.
And of course, it was the job of Wendy’s attorneys to take them through a lot of pharmaceutical terms and a lot of stuff about clinical trials, so they painstakingly went through exactly what akathisia means and how GlaxoSmithKline in clinical trials would hide any instances of akathisia and would often code it using something completely different. So if a person in a clinical trial suffered akathisia, the reporters of that clinical trial would often write something else down when they really should have wrote, this person is suffering from akathisia. But GSK have got a history of doing that, as have other drug companies. They recode. They recode something to keep it away from the regulators, the FDA, and for people when they’re going through disclosure in litigation, but lawyers are way too clever for them now, you know. They left a paper trail and, as you know, they’ve been sued many, many times because of it.
So yeah, I reported on it every day, which kind of gave people a window into it, those that couldn’t be there, and again, you know, that got an awful amount of coverage, you know, people sharing it on Twitter and Facebook and stuff and places like Mad in America. You know? And of course, because I’m the guy that writes sarcastically, I didn’t let up. You know, I didn’t – I don’t want to be a professional journalist and not add certain things; I want to tell it how it is, and so I did during the trial. You know, I would kind of mock their performance, the GSK attorneys’ performance. And I don’t care what GSK think about it. You know, they’ll always think bad of me.
I had a whistleblower come up to me in California. I was out there for an awards show. And after the show, this woman came up to me and she says, hey, Bob Fiddaman, and I said, yeah. And she said, I’m part of a whistleblowing lawsuit and I can’t really go into that but I can tell you, because I used to work at GSK, that every time you write something about them they cringe. And yeah, that made me feel good. That’s payment for me. You know?
AM: And you mentioned the book you wrote, which tells the story of your experience on and with Seroxat. How did that come to be? Why did you decide to write that book?
BF: I wrote it because I wanted – there was always the fear hanging over me that I could be shut down at some point; they could shut the blog down. They’re so powerful that they could do that. And I thought, well, I need this in print. So I basically went back to when I started the blog and I also went back to a bunch of emails that I had when I came off cold turkey, because I was emailing my doctor. And I thought, you know, there’s a pretty good book here, not only can it help people realize that they’re not crazy, this is a drug thing, it may also help people — if I explain what I did, how I tapered, it may help people and doctors come off the drug without any problems. And I kind of stress throughout the book, do not go cold turkey, even though I explain that’s what happened to me.
[Andy Miles] If you'd like to find out more and get the best information about this important topic of akathisia, the MISSD website is a great place to start.
[Wendy Dolin] "If you go to our website, the section that says What Is Akathisia? you will see the two MISSD videos, as well as we have an educational PDF that you can print off. We also are on Facebook and Twitter. If you like this podcast, learn more about akathisia and just send it to your contacts. And this is the way we spread our message. And I hope that people will really look at the signs and symptoms of akathisia. They’re listed in the videos, listed on the website."
[Andy Miles] That's MISSD founder Wendy Dolin.
You've been listening to the “Akathisia Stories” podcast. If you'd like to share your own story for this podcast, please email studio.c.chicago@gmail.com, and please share this podcast and subscribe.
I'm Andy Miles and I'd like to thank Bob Fiddaman for his time and candor. And I’d like to thank you for listening.