(from 20 mins in):
Lauren: So Simon, in the late 80s, you worked as a trainee psychiatrist in the National Hospital for Neurology in London, and that marked the beginning of your research into chronic fatigue syndrome. What interested you in the condition to begin with?
SW: It doesn’t have a natural home. So, Lauren, if you, on your way home, start to have a heart attack, you will see a cardiologist. And if I, if this interview is so terrible that I give you post-traumatic stress disorder, you would see a psychiatrist. That’s how it works. But if, in *this* condition, it’s not clear who you should see. Nobody claims it and therefore there’s no obvious safe place for patients to be, and the backstory comes from these newspaper headlines that were, even then, saying things like, “Virus research doctors finally prove shirkers really are sick”. So the view was that you were going to be considered a shirker, a malingerer, making it all up. And I suppose I thought, p’rhaps naively at that time, that we could do some good here, because I thought, well, we can’t treat people worse – they weren’t getting any treatment at all. But it became, as I mentioned, the controversies that were there never went away, and it became an unpleasant area to be specialising in – not clinically: the patients were fine and to this day I still see them – I must have seen, I don’t know, well over a thousand by now, and I wouldn’t do that if it wasn’t rewarding. But the public side of it became very toxic.
Lauren: Yes, I mean, you never discovered a cure, but certainly pioneered some treatments, with some success. [SW: Yes] But you received hate mail, even death threats.
SW: Well. It… That’s true. But that wasn’t really the problem. These things happen to lots of people. It was more the constant scrutiny, the pressure, the stalking, the referrals to regulatory bodies – it was that kind of thing that was the most difficult to bare, and I just…
Lauren: Where was that coming from?
SW: It was coming from some groups of people, not, as I say, not from my patients at all, but from the groups who didn’t want you there because of what you represented. And, certainly, you can understand why people get very cross and very frustrated and feel denigrated by that kind of dichotomy: if my problem was remotely psychological or social or psychiatric, it would mean I’m not ill, it would mean I’m actually making it up. And I think it does come down to that fear. And it’s a reasonable fear that people had, but it wasn’t reasonable, I think, to project it onto myself and my colleagues, who were not part of that and who, ironically, *we* were the people in hospital who *did* believe that this was a genuine illness.
Lauren: It must have been an incredibly stressful time for you going through all that, and your colleagues. You said there was a moment that you remember clearly, that it was time to stop. [SW: Yes] What happened?
SW: It was in 2000 that I was at a meeting in America – at NIH – National Institutes for Health – which is epicentre for medical research around the world – certainly the biggest – and it was, you know, unpleasant – the atmosphere was very hostile, and I remember taking the decision there that I just thought, I don’t want to do this any more, I don’t want to have to defend what I do, and so I took that decision, went back to the airport afterwards and for the first time in my life I got upgraded. I thought that must be a sign from heaven that this was meant to be.
Lauren: So Simon Wessely, by the mid 1990s, you’d turned your professional attention to Gulf War Syndrome…