By David Tuller, DrPH
Last week, I spoke with George Monbiot, a British investigative reporter and political activist, who has been a columnist for The Guardian for almost 30 years. He and I have been in occasional communication in recent years over an issue of mutual interest—the scandalous mistreatment of patients suffering from the devastating illness (or cluster of illnesses) known as ME/CFS and, more recently, from Long Covid.
For years, I have been hoping that a prominent British journalist would take on the charlatans who foisted the fraudulent PACE trial upon an unsuspecting public. Last month, Monbiot gratified that desire with a scathing column that correctly characterized the treatment of ME/CFS patients as a “national scandal.” (I blogged about the column here.) As he explains, his interest in the issue was largely prompted by the actions of PACE investigator Professor Michael Sharpe. Three years ago, at an insurance industry gather organized by Swiss Re, Professor Sharpe essentially blamed Monbiot for triggering patient reports of Long Covid by having written about it. (Monbiot’s initial 2021 column on Long Covid is here, and his response to Professor Sharpe ridiculous criticism is here; my blog about the contretemps is here.)
I posted the video of our conversation here. Below I have included a transcript, which I’ve edited for clarity and readability.
**********
DT: Hi, so I’m here with George Monbiot. I’m very tickled to be having a conversation with you. Thank you so much for joining me to discuss this. You wrote a column in The Guardian earlier this year that got a lot of attention and was basically about the sad history of ME/CFS and the research into it and what’s happened. Why don’t you discuss first how you even got into this issue.
GM: Thank you, David, and first I’d like to say thanks so much for your sterling work, which has been a great influence for me and has been very useful in summarizing a lot of the issues, which for journalists like me is absolutely crucial. You know, I try to do as deep a reading as I possibly can, but it’s also really great to have someone laying it out and saying, ‘Here is the situation as it stands.’ And I think you do that fantastically well.
DT: Thank you.
GM: So I first became interested in the issue of ME/CFS as a result of my interest in the issue of Long Covid, and that started as a personal thing. I had what is technically defined as Long Covid in that I had severe symptoms for 14 weeks. I mean, it’s nothing by comparison to what so many people have suffered, but it was a very frightening time because it made me wonder if I was ever going to get out of it. For 14 weeks, I couldn’t walk to the end of the road, and I thought, ‘Is this going to be my life?’ Because as we know it now seems to be the life of many Long Covid sufferers, to have that and even worse.
And then it became clear to me that there are certain aspects of Long Covid that are strikingly similar to certain aspects of ME/CFS. And so I wrote a couple of articles about my interest in Long Covid and what it might do, and about how, through government neglect and a failure to engage with the real long-lasting impacts that Covid can have, we were creating a mass disabling event by allowing it to rage through populations. Following that strand, it became clear to me that there had been massive neglect of Long Covid patients but also of ME/CFS patients.
And I wrote an article about this, and about how poorly both groups have been served by governments and by the medical establishment, and how much more research and investment is required to properly meet the needs of these groups. And this extraordinary thing happened, which was that I found myself featured in a presentation by this man called Professor Michael Sharpe. It was a presentation at a meeting organized by Swiss Re, this huge reinsurance company with a very major interest in medical issues because of all the health insurance payments that need to be made, particularly for chronic medical issues. That can be very expensive for health insurers.
And in this presentation, Michael Sharpe blamed me for causing Long Covid and potentially ME/CFS–that I was causing it by talking about it. I was sort of bringing it into existence by discussing the phenomenon. This made me very worried, because I thought, ‘Well, you know, if I can do that with Long Covid, if I can create it by talking about it, maybe I’ve been doing this with all the other issues I’ve been writing about.’ I mean, you know, perhaps environmental collapse is my fault, that by spending 39 years writing about environmental collapse I’ve actually precipitated it. And the hideous thought arose that I might have caused more suffering than the entire cast of Alvin and the Chipmunks. Anyway, so I was gobsmacked by this.
DT: He was essentially calling you a super-spreader.
GM: Exactly. He called me a super-spreader of Long Covid by talking about it. I thought, ‘How do you create Long Covid by talking about it?’ And for me, that opened up Pandora’s Box. It was a discovery for me of this remarkable school of thought that Sharpe represents of the ‘biopsychosocial’ model, which is effectively saying that these devastating chronic illnesses are all in the mind that these are hypochondriacs, these are people who are imagining they’re ill, and people like me are encouraging them to imagine they’re ill, and that these aren’t physiological conditions, which seemed to fly in the face of everything I was learning about both of these sets of conditions.
DT: And learning from your own experience as well.
GM: Yes, exactly, frm my own experience. Like everybody suffering from those conditions, the one thing I wanted above everything else was to get better. You know, I wasn’t willing myself into that state. I was doing all the things which might have helped me to get out of it. Though basically it was just a question of sitting and waiting. That really was the only thing which was going to get me better. And all the sort of things which might intuitively make sense, like ‘I’ve got to push past it, I’ve got to exercise my way out of it.’ Far from helping, that actually makes you a lot worse, so I was very careful not to do that because I’d been reading a bit of the proper science on this subject.
DT: These people seem to have the idea that millions of people around the world want nothing more in life than to lie in bed and fulfill their ‘sick role’ and that they don’t want to get better. It’s kind of an extraordinary notion. .
GM: Well, this was what struck me more than anything, and the utter cruelty and ignorance of the position. Not least because I’ve got a couple of good friends who suffer from ME/CFS, and both of them were super active before they were struck by this illness. They were very dynamic, energetic people who had so much to offer and were doing great creative things. Actually, both of them were authors, but they did lots of other things as well, and they had these visions of all the things they wanted to achieve. And then—bam!–this condition hits them and they can’t do that stuff, and the despair they experience as a result of that is off the scale.
As you’ll be aware, there’s one study of the conditions of the life of people with ME/CFS, and by comparison to people with stage four lung cancer. And the people with stage four lung cancer have a higher quality of life than people with severe ME/CFS. They’re really saying that’s what people subconsciously want. They have this whole idea that you’d get better if you wanted to. In my article, I quoted something you’ve picked up on—a nurse in one medical paper saying “the bastards just don’t want to get better.” That is so far from my experience and the experience of my friends.
DM: So just to clarify–that’s a quote from a qualitative study of the people involved in delivering the intervention to very severely impacted patients. And so when they did this qualitative study, one of the quotes was that really astounding one blaming the patients explicitly for not wanting to get better.
GM: Yeah, it’s so scandalous. It’s the sort of thing you would expect in the 19th century. In 19th-century medicine, so much of it was about blaming the patient, about the underclass being inherently unhealthy. There were all these horrible prejudices, particularly in psychiatric medicine. And to see those now still surviving in the 21st century and some of the people promoting that idea getting all these honours and positions and chairs and government posts and all the rest of it, and you think, ‘This is crazy.’ I mean, what the hell is going on here?
And it seems to me that what is going on is that they tell a very convenient story, particularly for governments who don’t want to pay big welfare bills, who don’t want to be supporting people with long-term conditions–people who just can’t work. They cannot support themselves economically because their condition forbids it. It’s very much in the interest of government to deny that and to try to push them off the benefits rolls, and to ensure that they have to somehow fend for themselves. And so it seems that people who tell this completely false and highly misleading story make themselves very popular with governments even if there is no factual basis for what they’re saying.
DT: Well, one of the things that’s kept me interested in this is that this the research is so bad. We don’t really need to talk about the PACE trial, but let’s just say it’s really, I think, a fraudulent piece of work, but one that was published by The Lancet and accepted at the highest levels in the UK and in the US, too—I don’t want to exclude my own country. This was accepted as quality work, even though it’s been used in epidemiology classes at Berkeley as a case study of horrible research. So it’s extraordinary to me that this emperor-has-no-clothes mentality seems to have infiltrated the entire academic, medical, and government structures of the UK. I find it completely mind-boggling.
GM: In general, I’m a great supporter of science. I feel that empiricism is absolutely essential. In fact, we see far too little of it in society and we see far too little in the environmental movement, which is my main focus. Often we’re swayed by wishful thinking rather than by actual facts and numbers and research findings. The evidence should guide our moral reasoning, but I’m also aware that in many fields the evidence has been twisted, distorted, deliberately pushed in a particular direction by commercial imperatives or by political imperatives. And we’ve seen a long history within science of false results or false findings driven by commercial or political interests.
It’s a very dishonourable history and it’s one that all good scientists seek to distance themselves from. And it’s not to diss the principles of science, and it’s not to diss the importance of science, to say that sometimes science is done very badly. And sometimes something being done very badly is not just a simple mistake. It can be consciously or unconsciously as a result of certain pressures, and in this case it’s clear that science has been done spectacularly badly and continues by some people to be done spectacularly badly, and it gets harder and harder to see that as an honest mistake.
DT: So this brings us perhaps to the role of the Science Media Centre in London in disseminating this perspective, and the journalists who parrot the Science Media Centre line as it has been on this. You previously had looked at the Science Media Centre many years ago, and I don’t know how much you’ve looked yet at their role in this particular instance. But I’m curious how you see their role in all this.
GM: It’s an extraordinary thing that the Science Media Centre is treated as a respectable organization, even as part of the establishment. But they arose from this utterly bizarre group called the Revolutionary Communist Party, which was founded in the late 1970s at the University of Kent by a group of people centred around a man called Frank Furedi, a teacher at the University of Kent who’s now working for Victor Orban, the Hungarian far-right autocrat. This was always a far-right movement which very cleverly disguised itself as a Communist movement. It’s a really bizarre, weird 1970s group but with a history of endless splits and internal side warfare. But they hit gold when they realized that they could smuggle this sort of far-right agenda into the left simply by saying, ‘We belong to the left, we’re Communists.’ And it caused utter chaos and confusion on the left and was highly effective at disrupting and disturbing left movements.
It’s a sort of devious tactic that Steve Bannon and Dominic Cummings and people like that have gone on to develop. These far-right figures have finally come home to roost in their far-right places. One of the leading lights of it was Claire Fox, who became a Brexit party MEP for Nigel Farage’s party and was eventually put into the House of Lords by Boris Johnson as a Conservative lord on the advice of his special advisor Munira Murza,
who is another member of the same network
DT: Claire Fox’s sister, of course, Fiona Fox, was the long-time head of the Science Media Centre.
GM: Yes, she co-founded it, and so this group took over almost all the infrastructure of science communication in the UK. It was an extraordinary thing, this remarkable coup—a whole series of groups, like Sense about Science, that they took over, which clearly to me was a concerted program. They recognized that this interface between science and media was going to be absolutely crucial in determining how we see ourselves and in the political direction that the country takes.
Now a big part of the ideology of the Revolutionary Communist Party, this far-right organization, was extreme individuation of blame and responsibility. You know, there’s no such thing as a social failing, there’s no such thing as a structural failing, a systemic failing, a state failing. It’s all about you–if something goes wrong, it’s your fault, and you and you alone have to pick up the pieces. They quite overtly at times said, ‘We should get away from this whole idea of there being victims, there’s no such thing as a victim, this is just a myth created by these do-gooding liberals, and you’re basically on your own and that’s how you should be.’
And this was a guiding ideology behind the foundation of the Science Media Centre. But if there’s one group of massive suckers in the world, and I say this as a journalist, it’s journalists. You can sell anything to a journalist as long as it aligns with the interests of power. You can’t sell anything to a journalist, however well-evidenced, if it bangs up against the interests of power. But if is in the interest of power, they’ll believe anything. Read The Telegraph, watch Fox News, read The Daily Mail, they’re just absolutely full of complete nonsense from wall to wall.
And so all the nonsense which is put out by these dark-money junk tanks, these so-called think tanks. Media report it verbatim as if it is something real. So everything the Science Media Centre said just gets accepted right across the spectrum of journalism as being true, because they think it’s science. And part of the problem is that there are very few scientists in the media, there’s a few specialist reporters, there’s a few people like me with a science background. But on the whole those who make the decisions–the editors, the newsroom staff, they’re not scientists. They’ve got a humanities background.
When someone comes along and says, ‘You know, this is science, we’re representing science,’ even if they themselves have no scientific credentials, which is the case with Fiona Fox and the whole of the rest of that Revolutionary Communist Party group, if they can speak the language of science and they can say we’re linking you up with these eminent scientists, there’s no questions asked. It just, ‘All right, that’s science, okay, we’ll just report that as is.’Right at the beginning the Science Media Centre recruited Professor Simon Wesseley, now Professor Sir Simon Wesseley, who was one of the leading exponents of this biopsychosocial model, which basically says it’s all in the mind.
And it was a good deal for him because he gets massively boosted and his position gets massively boosted in the media. But it’s also a good deal for the Science Media Centre, because by associating with eminent professors like him, with people with high standing, particularly with government, they make themselves look respectable. Whereas in reality they’re anything but. And so there is this sort of mutual back-scratching going on between the two, kind of a symbiotic relationship. And the most extraordinary things happened. So for instance they put out these pure biopsychosocial interpretations of ME/CFS and recruit journalists to parrot that line.
DT: As I’m well aware, having been the subject of one of these articles by someone who was a bestie of the Science Media Centre and actually appeared in promotional materials for their 10th anniversary. To me, that journalists are appearing in promotions for the Science Media Centre for their 10th anniversary bonanza seemed extraordinary.
GM: I know, that’s not a good look at all. And also that journalists were just taking their word for it about the purported harassment faced by these researchers as well. So the
story became not ME/CFS patients being very badly served by the current state of medical science, which is obviously the story anyone with any proper journalistic instincts would immediately see, but instead that these poor hard-working scientists are being threatened and abused by ungrateful ME/CFS patients. Well, okay, maybe some people sent some bad emails and that shouldn’t ever happen.
DT: Let’s acknowledge that that undoubtedly happened and that there were undoubtedly unpleasant emails or phone calls or things that happened from a very tiny cohort of troubled patients.
GM: But let’s be honest, it happens to journalists as well. Because I was very much against the Iraq War, I got a death threat at least once a day throughout the entire period during and immediately after the first Invasion. And I mean very lurid death threats. Often I didn’t take any of them seriously. You can either choose to take that stuff seriously or you could just say this is the bollocks that comes with e-mail and social media and stuff. It just goes withg the job. And I’ve had it all my working life, from when I was first a journalist in 1985—endless abuse and threats and stupidity and insults and all the rest of it.
It’s not good and no one should ever do it, but is that really the story, and did it even stand up in many cases? They were just taking the word of scientists and researchers that they’ve been threatened and abused. Maybe they had been, but you should still be looking at the evidence and asking what exactly was said and who exactly was saying it and is it exactly like they say it is.
DT: And those stories in the press never reported on or actually examined the concerns about the science. They just skated over those and presumed that because Sir Simon or because Michael Sharpe or because someone else distinguished said something or other that the science was incontrovertibly correct.
GM: What they were doing in all cases was simply taking the Science Media Centre word for it. It sounds like a respectable organization. I mean all these junk tanks sound like respectable organizations–the Institute of Economic Affairs, the Cato Institute, the Heritage Foundation, they’re all just founded by dark money, by very dodgy people with dodgy agendas. But they give themselves a grand name and journalists say, ‘Oh yes, that’s obviously a very serious, respectable organization.’ And then the most amazing thing is this journalist from the Today programme, who basically just repeated what the Science Media Centre was saying, was put forward by the Science Media Centre for a major journalism award, and he won it just for reciting their claims.
DT: Right, and they cited that in their account of their work—‘Oh, we gave him this story, then we nominated him for the award, and then he won the award!’
GM: Yeah, they were completely open about it. Then they boasted also about how they put Sir Simon Wesseley forward for the first John Maddox Award, which was set up by their sister organization Sense About Science, which was set up also by members of the Revolutionary Communist Party. So they put him forward for that award and he wins this award, and then all the journalists say, ‘Oh, wow, Sir Simon Wesseley has won the John Maddox Award, this is ultra-respectable, these are knights of the realm, these are these are good people who cannot be challenged.’
DT: Yes, and he won the won the award specifically because of his ‘courage’ in standing up for science against, you know, these horrible activists who were challenging him. I think we’ve seriously covered the Science Media Centre. I’m curious what the reaction to your recent Guardian piece was.
GM: So the piece got a massive and very supportive reaction from ME/CFS patients and those who advocate for them, who you know have been so badly served by the media. There have been so few people who have said, ‘Actually, this is a greatly neglected and abused community of patients who are just not receiving the care that they deserve, they’re not receiving the research and the investment which this condition merits.’ There’s a huge number of them and they are suffering massively, and yet that is just not being heard.
So a lot of people were very glad to see that article, and they expressed that gladness, which made me happy. Because you always want to try to do something useful, and as a journalist you know you’re never quite sure whether you’re speaking into a void or not, and whether you’re actually helping things to get better or not. And so that was good to see. I was really struck by how muted the pushback was. I was expecting, you know, that whole sort of Wesseley/Sharpe/Science Media Centre brigade to really pile on, but I think they’ve realized the jig is up. I think they’re now seeing that you just can’t keep pushing this any longer. And it was because of the expert advice I got from several people, yourself included, who are all experts in the field, and I’m evidently not.
For instance, calling it a ‘real’ illness. Of course psychological illnesses, as you and others pointed out, are ‘real’ illnesses. But physiological illnesses are not the same as psychological illnesses. Sometimes they overlap but sometimes they’re entirely separate. You and others were extremely helpful about getting the terminology right and clearing up some of my confusions. I think because we nailed it down there was really no room for them to pick up specious points or say he’s calling it this when it’s actually that. They had no room to maneuver. And it seemed to me from their responses very clear that they had nowhere they could go with this, and so they had a very limp and muted response to it. Because if they had said anything else they would have been so blatantly in conflict with scientific principles that they would have made life much harder for themselves than it was already.
DM: To clarify the point about ‘real’ or not ‘real’ illness, they really rely a lot on this. If you say this is physiological, part of their pushback is always, ‘Why are you denigrating mental health and why are you insulting people with mental health?’ And it’s such a red herring. Nobody has seriously questioned whether mental health issues are completely horrible and just awful experiences. But they take that and that’s their pushback, and it’s just ridiculous, and insulting as well.
GM: And also, of course, many people with ME/CFS do have very serious mental health issues. Why wouldn’t they? If I were bedbound or even housebound it would very seriously impact my mental health.
DT: Especially if nobody believes that you’re sick.
GM: Exactly. There was a Swiss study I cited in the piece showing that the greatest driver of suicidal ideation amongst ME/CFS patients was not being believed, was being gaslit by people who were telling them, ‘You’re just imagining all this, this is a psychosomatic condition.’
DT: How much do you think that the Long Covid situation has impacted perceptions of ME/CFS and perhaps brought more attention to it and to the fact that there is such a thing as post-acute viral illness, that this is something that happens after all viral illnesses and that it should not be a surprise that it’s happening now?
GM: Well, I can think of my own experience. Because until Covid came along, I had taken a binary view of infectious disease. It’s something that either kills you, or you get better. It’s one or the other. And if you get better, then everything’s fine and life carries on as it was before. If you don’t get better, you die. That that was how I saw it, and I was very naive in seeing it that way because I’d never really thought about it much. I’ve had quite a few infectious diseases like everyone’s had, and I’ve recovered from them and life’s got back to normal. You just assume that’s how it is.
But I think a lot of people, as a result of either having Long Covid or knowing someone who has it–and many of us know lots of people who have it or are hearing a lot more about it in the media–began to recognize it’s not as simple as that. There is recovery, there is death, but there’s something in between, which is not recovering or not fully recovering but suffering a different set of symptoms than the initial ones you had as a long-term sequelae of that infection. So I think quite a lot of people have undergone that change in mindset, like I have, of recognizing that this is a lot more complicated than the sort of popular misconception of how infectious disease operates.
DT: I think it’s also different because Long Covid has come in epidemic or pandemic form. It’s one thing if you see sporadic cases of someone who has a viral illness, and it’s happening here or there and not all at the same time. Now you see a worldwide phenomenon, with millions of people reporting very similar things, and either you think it’s mass hysteria and that all these people are so fraught with anxiety, depression, post-traumatic stress disorder so they’re having these sort of symptoms, or you actually think something is physiologically going on that’s triggering these symptoms and we need to figure out what it is. I don’t quite understand the motivation to go one way when the other way seems much more obvious or makes much more sense in any kind of normal world.
GM: Well, as I’ve gotten older, I’ve begun to understand more and more how our moral boundaries are not created entirely by rational decision-making and how we’re influenced by deep themes–what the brilliant cognitive historian Jeremy Lent calls ‘root metaphors’ and cultural themes of which we might be completely unaware. I’m sorry to say that one of those is misogyny, and one of the very striking characteristics of both ME/CFS and Long Covid is that they disproportionately affect women. And there’s a very long tradition in medicine, but also in the wider culture going back many centuries of a disbelief in women, of not believing what women tell you, not believing the symptoms that women might have, not believing the suffering that women might be undergoing.
Medicine’s always been, or until recently has been, super male-dominated, and that luckily is beginning to change. But that legacy is with us still. And what we’ve seen in the history of scientific reporting on ME/CFS is some deep misogynistic strands–you know, not believing in it because it is largely women who suffer from it, and therefore it must be a hysterical condition and it must be all in the mind because women aren’t rational, women can’t reliably report their symptoms, women really don’t actually know what’s going on in their own bodies. This whole sort of long-term denigration of women’s experience and disbelief in women’s experience, I think, often entirely unconsciously still guides some decision-making even at the highest levels.
DT: Well, we’ve talked for a while now, and I like to keep these videos relatively short. So the final question–what comes next for you in this line of reporting?
GM: I want to properly investigate the role of the Science Media Centre, which I’ve touched on very briefly. That brings together these two strands of interest for me, because as you say way back in the early 1990s I’d started investigating this Revolutionary Communist Party group and the false claims it was making and the devastating impacts it was having on environmentalism. It managed to populate the media with claims that it was all imaginary, there’s no such thing as an environmental crisis, etc. So it brings together that interest with my more recent interest in ME/CFS and Long Covid. The denialism and minimization that has been pushed by the Science Media Centre is very much of a piece with the issues that they’ve pushed going way back, so I want to look more closely at that and at how journalists are just such total suckers for these narratives, and how we ought to–excuse my language–just grow the fuck up and actually be led by the evidence, not by what people with impressive-sounding names are telling you.
DT: I will look very much forward to that. Anything final you want to say before we end?
GM: It’s a great pleasure to talk to you, David, and I guess the one last thing I want to say is, look, we can theorize all this, but there are very large numbers of people suffering to an absolutely outrageous extent. Most of them women–not all of them, of course–often with very long-term conditions which have absolutely horrendous impacts on their well-being. And the fact that this is not one of our very top medical priorities is itself a massive scientific scandal.
DT: I would agree with that. And thank you very much.