Of AIDS and ME.
Interview with a public health mensch.
I recently had the chance to speak with public health journalist David Tuller, a personal hero of mine, for a piece I’ve been doing on the parallels between HIV/AIDS and my own disease (ME/CFS). David started out as an AIDS activist in New York City in the 80s for the historic advocacy group ACT UP before going onto become a career journalist — contributing to the New York Times for decades and editing the San Francisco Chronicle through the 90s — and earning his doctorate in public health later in life. He now serves as a senior fellow in public health and journalism at UC Berkeley’s Center for Global Public Health.
In the late 2000s, David started covering the issue of ME/CFS (Myalgic Encephalomyelitis / Chronic Fatigue Syndrome) for the New York Times health section and now does his crowdfunded project on Columbia University’s Virology Blog exploring the controversies around the illness and similarly neglected conditions. David is probably best known for debunking the infamous PACE Trial, a study which tested graded exercise and cognitive behavioral therapy for ME/CFS patients and claimed to prove these treatments could potentially cure the disease. That doesn’t seem to be the case, to put it gently. David and I talked about the similarities and differences between ME and AIDS — the diseases themselves and the advocacy around them — how he got into covering this issue, the problems with the PACE Trial and similar psycho-behavioral models, and why there seems to be so much investment in the rather strange idea that my disease doesn’t physically exist. I knew he would bring some insight into these two seemingly very different conditions, and he didn’t disappoint. Our conversation has been edited for length and clarity.
Samuel Kronen: So what did you make of my inquiry [about the relationship between AIDS and ME advocacy] — and what did it make you think of?
David Tuller: Well, it’s always seemed to me that, with HIV, basically you’re healthy until you’re sick. And so you can ACT UP and protest, it doesn’t make you sicker. It’s just the disease progression, at a certain point you can’t do that. So people could be very active. But that’s obviously different with ME/CFS, where the more you do, the sicker you might get. So people really have limited capacities.
The other big difference is that people with HIV died regularly. And so at the beginning of the crisis in the 80s and 90s, you couldn’t pretend that people weren’t really sick. There was no, ‘oh this isn’t a real thing’ going on. Nobody cared much that gay people were dying especially. But there was no pretense that it wasn’t a serious illness that was killing people. That’s also a huge difference between the two circumstances. In one case, you have a disease killing people but you don’t care, so people have to ACT UP. And in another case, people are really sick and disabled but nobody really believes them and they don’t have the potential to ACT UP so much because they’re just too sick. So the overlaps are there, but the differences are quite large.
SK: It’s an interesting contrast.
DT: So for example, the millions missing hashtag and the empty shoes imagery [where pairs of shoes were left on the street to signify patients who dropped out of public life], that’s sort of taking a hint from AIDS advocacy — a visually provocative way to represent things, which is kind of an ACT UP thing to do. But it takes advantage of the fact that people are missing. It plays on that trope. Which was not the case with HIV. People would play corpses on the street representing dead people. In this case they have shoes representing missing people, because people aren’t dead, they’re just mostly missing. I mean, some die — obviously we know that. But that’s not the main thing that happens.
SK: So part of the lack of aggressive advocacy is that people are simply too sick to protest?
DT: Well, of course they get accused of aggressive advocacy in terms of all the charges of death-threat making and that kind of stuff. I don’t know that AIDS activists were really accused of making death threats in the same kind of way. There was lots of anger. But they were more demonized as being uncivil. They weren’t demonized as death-threat making crazy people in the same way as ME activists. That’s my memory, but again this is going back forty years. So there was a lot of anger. People were calling Fauci a murderer and Nazi and all sorts of things. But those were verbal taunts. There were no serious accusations of death-threat making as you see in the response to ME activism.
SK: So it’s a different kind of stigma.
DT: Yeah. The stigma of HIV was that you were gay. You may have been a hemophiliac or you might have been something else but mainly it was that you were gay, or a drug addict. You were down and out anyway, was the idea. The stigma here is that you’re just a lazy woman, complaining about things just because you’re unhappy or whatever the idea is that the psychiatrists have about it. So there’s a difference in who’s getting sick, there’s a difference in the manifestations of the illness and there’s a difference in the outcomes. It’s very easy when people are just lying there in bed to pretend that they’re not really sick in some way or that they’re really just having a psychological illness. You couldn’t pretend that people with HIV were just having a manifestation of psychological illness. They weren’t just complaining of symptoms. They were dying. And there were actual biomarkers. Before there was an HIV test, there were clear medical indications that they weren’t doing well. Once there was a test, you could actually locate the cause. Of course there were the HIV denialists who did claim it was lifestyle or whatever else.
SK: So the lack of a solid biomarker has been an obstacle to recognizing ME. You’ve also mentioned that it’s probably a cluster of diseases rather than a single condition with a single cause.
DT: I think that’s very clear. We don’t really know what ME is. Very clearly with HIV, you had people dying of opportunistic infections. You had young men getting KS, cancer unexpectedly. Usually it’s older men in the Mediterranean having KS. You had young men having pneumonia, dying of these things people don’t die of. So even before there was an HIV test you had markers and reasons people were dying.
SK: There was a little psychologizing with AIDS, wasn’t there?
DT: Maybe in the very beginning. There were people saying it was the recreational drugs and that kind of thing.
SK: Stress.
DT: But I don’t remember anyone really saying it was psychological in the sense that people were somehow imagining they had these symptoms or imagining that they were dying. I’m sure there was a lot of moralizing, ‘payment for your horrible behavior’ kind of thing. But there was no question that there was a medical illness killing people.
SK: You said your memory was a little hazy but do you remember how it felt — did AIDS advocacy feel as compelling as we look back on it now?
DT: To be a gay man in New York in the 80s? Horrible. I mean it felt incredibly urgent, everyone was talking about it. And it was different, because it was clear pretty early on that people got HIV from fucking. So it created a sense of paranoia about what you could do and what kind of sex you could have or if you could kiss even. There were all sorts of concerns. That doesn’t happen with ME, because it’s not seemingly infectious. It’s obviously triggered by a viral illness. But the condition itself is not infectious, in the sense that I might get a virus and get over it and someone else might get the same virus and come down with ME.
So there’s not the same paranoia about contagion. People are not worried about being infected by family members with ME. But they were worried about getting infected through intimate contact with HIV. So there was a lot of terror. I mean, it’s different for me now. I’m not an ME patient, and I never had HIV. But I was very worried about it and susceptible and exposed to it in a way that I personally don’t worry about the risk of getting chronic fatigue syndrome or ME. The sense of paranoia and terror for me is very different because in the 80s and 90s, it was my cohort that was getting sick and dying. And you saw it every day. If you’re in the ME community, you see it everyday. But for the most part, you don’t. You’re not aware of it. HIV was my life. I was a gay man in my 20s in New York City and later in my 30s in San Francisco. It was all of our lives, all the time. Covering ME for me is a professional effort, based on my journalism and public health background. It’s personal because I know so many patients and care about them. But not in the same way that HIV was personal. This started for me as an academic journalism pursuit, not as something I had a passion for or felt was necessary in my own life. It was something that I came across through friends and work that seemed like an important issue, and not something that I came to out of personal need like my HIV activism.
SK: So what did morally compel you to get involved in ME — was it just the suffering you saw?
DT: Well it wasn’t really morally, at first. Basically what happened was I wrote some about it because I had a friend who got sick in the early 90s and was diagnosed with what I guess was called at the time Chronic Fatigue Immune Deficiency Syndrome. So that got me interested and the first time I ever wrote about it was in the 2000s for the New York Times health section. In about 2009-2010, there was a whole lot of discussion that it might be a mouse retrovirus, XMRV. So I wrote about that aspect, and in early 2011 the PACE Trial came out and other papers related to it and that’s when I took on the PACE Trial.
Once I started looking at the Pace Trial, and then I saw what patients were writing about it, I checked it with my epidemiology and biostatistics colleagues at Berkeley and they said, ‘yeah, this trial is a piece of shit, you really should report on it.’ So that’s what got me onto it and I thought it would be a one-off — I wrote my 15,000 word investigation — and naively thought the trial would be retracted. I just assumed something would happen but nothing happened so I just kept going and writing more and more and I couldn’t believe how horrible this study was and that it wasn’t getting retracted. From then, I had a sense of moral outrage. Of course once you start reporting on something, you meet people who are suffering, and I found it really hard to believe that this trial, which is just a piece of garbage and really research misconduct of the highest degree and really fraudulent in how they did things, just the fact that it’s still in the literature I find fascinating and horrible and the sense of injustice and outrage about that particular thing has kept me going. Because I see how destructive it’s been to patients, also.
SK: Basically PACE was so bad that it made you feel like something’s going on here.
DT: Well PACE was something going on here, because it was just fraudulent and it had been totally accepted. It was completely an emperor has no clothes situation and it’s just fascinating as an observer to see an emperor has no clothes situation at the entire top of the hierarchy of British academia and medicine. How that’s happened is unbelievable, why and how, and who are these people that they can publish bullshit, fraud, and get away with it and no one says boo? And when I say boo, they start complaining to Berkeley about my work. It’s astonishing.
SK: What do you think is going on there — why is there so much investment in that perspective?
DT: First of all, it’s money savings. Basically the progenitors of this whole thing, Simon Wessely and his colleagues, the PACE authors, have all been advisors or connected to disability and health insurance companies as well as government agencies that want to limit payments. Nobody wants to make long term payments for years, if you tell them, well, they just need cognitive behavioral therapy for three months and they’ll get better. Well okay, great. That’s good for the government to save money. That’s good for private insurance to save money.
So these people have spent decades building their reputations on this theorizing, and governments and insurance companies have saved lots of money, so they’re dead set against any changes. Once a whole field gets invested in a certain way of looking at things, it doesn’t shift very easily. People are wedded like crazy to their beliefs. In this case, you have people who have spent thirty years or more devoting their lives to this idea, and this therapy and these treatments. And what we’re saying to people like Michael Sharpe and Trudie Chalder, who have been involved in this field, that not only has your work been incredibly stupid and awful, but you’ve harmed hundreds of thousands of people or millions around the world with this advice. And to tell someone who’s my age that their entire life’s work is a waste and not only a waste but really harmful and has caused incredible damage, including suicides and so on, who’s going to be able to go along with that? It’s horrible, obviously, when someone says to you at my age, ‘your life has been bullshit.’ So you can understand the investment. I can understand it. I feel bad for these people. Unfortunately their work has been damaging. But I feel bad for them personally, because it’s a horrible thing to have to think about.
You know what they say about paradigms, they shift one death at a time. They don’t change because people change their minds. They change because old people die who believed in something and other people come up who are not so invested.
SK: And a lot of it is that the toll of ME is not really visible to most people.
DT: And when it is visible, people think it’s because you’re psychologically damaged. It’s much harder to overthrow this idea than if someone had said early on that HIV was all psychological. Well, as soon as the first ten people die, you know that’s not the case. We don’t have that here. So they think people like Maeve Boothby-O’Neill [a young ME patient who died of malnutrition after receiving inappropriate treatment] or the ones who are dying are not dying from ME but from something else. That seems to be the idea. And the thing is, we don’t really know what’s causing it or what the mechanisms are. Hopefully with Long COVID research that will possibly be resolved. So it’s a really difficult situation.
SK: So what do you think it would take to change it — a clear biomarker, more articles in the New York Times, different health policies?
DT: Well, first of all, I’ve been shocked by the lack of media coverage around this disease. For a long time I’ve been one of the only people out there covering it. With Long COVID, there are more people writing about ME. But still. The problem is a biomarker will probably only work for some and not for others. They really need to segment out the different subgroups and figure out the various mechanisms that are likely going on. Once research identifies one or more biomarkers, that will make a huge difference. But I have a feeling it won’t be a simple biomarker like with HIV, where it’s one test for one virus. It will probably be more complicated than that.
SK: Maybe new technology — better, different kinds of testing?
DT: Or maybe if you have an idea of what the mechanism might be and you find a drug that seems to work because it’s targeting what you think is the mechanism. So if they find a drug that seems to work that would also be some sort of evidence. One of the points of evidence that the psychological theory is wrong is that all these trials, no matter how much they try to manipulate the data, essentially show that very little happens with cognitive behavioral therapy and graded exercise therapy. You get marginal rates of improvement that are all based on self-reports and none of them are objectively measured. So you get studies designed to maximize bias and you get modest reports of benefits. That’s basically all we have as evidence for these therapies. But that’s largely because the studies are unblinded – everyone knows the intervention they’re getting – so you’d expect to have modestly positive, subjective improvements.
So if we actually found a drug that showed significant marked improvement in patients’ objective functioning, that would help. With these lifestyle interventions, you can’t really blind the trial. And if you’re only relying on subjective outcomes, there’s a lot of bias at play. With all these psychiatric studies on ME, no one ever benefits on the objective outcomes — like how far they could walk or whether they go back to work or school. Just the subjective ones, so you have to question whether the subjective outcomes are measuring anything other than people’s vague impression that they’re feeling better. If you test a drug, it’s fine to use subjective measures, as long as there are some objective measures that are correlating as well. Or if you use a drug and have a placebo control group and no one knows what treatment they’re getting. But if everyone knows they’re getting the intervention that’s supposed to work or not and then they report that they’re feeling marginally better, it doesn’t mean very much. Because they’re going to have a placebo effect or for any number of reasons report that they’re feeling better because they think they got the intervention that’s supposed to make them feel better.
So there’s a fundamental problem with all these studies. And we don’t have a biomarker, so it’s hard to test who has it. But that doesn’t mean you accept evidence that isn’t really adequate. In these studies, no one seems to improve on the objective measures. No one gets off benefits, no one goes back to school or work. And the authors just ignore that and say ‘well, people reported they felt less tired so it’s working.’ That’s bullshit.
SK: And there have been some drug trials for ME but I guess just nothing that was significant enough to make a difference?
DT: There’s been some, and one of the problems is they haven’t sub-grouped the people well enough, so they lump them all together. There’s a drug called Ampligen, which is an antiviral that seems to work for some but it hasn’t been approved by the FDA.
SK: I’m trying to get that.
DT: And there are some trials going on now for Long COVID patients that hopefully show some improvement. So there’s stuff going on, but it’s probably going to take a long time, unfortunately.
SK: And some of the Long COVID studies have the same issue with the sample, right?
DT: Well, they just lump everybody in with Long COVID, which is an even more porous category than ME. You have to really ask whether these people with long COVID symptoms have the characteristic symptom cluster of ME. So are they essentially ME patients that developed the condition from a COVID infection or do they have other COVID-related issues? And they’re also doing Long COVID studies similar to studies on ME, like ‘do you feel better’ kind of thing. They do some of the same bad things, where they just give people exercise and then ask them how they feel. And that’s not an acceptable way to do a study.
SK: So what can be gleaned from AIDS activism that might be helpful with ME?
DT: The thing about ACT UP was that it was very visually-oriented and graphic. The ME protest with the shoes symbolism was very ACT UPy. I think that’s been effective at demonstrating the absence of people. When I was doing AIDS activism, the first demonstration I was arrested for was when we were laying on the street pretending to be corpses. Having fun, I think, is a part of activism. One of the things about ACT UP was that it was fun, it was very cruisy. Guys would go to the Monday night meetings in New York because there was a lot of hot guys there, you know. All the hot guys wanted to be involved in ACT UP.
SK: Oh, okay.
DT: So it was fun. But again, it was different. Nobody had to worry about how much they were doing. Everyone was desperate to do as much as they could. People with ME are too, but nobody was having payback — you didn’t pay for it by getting sicker. People with ME have to worry about overdoing it and making themselves worse. Which was not something people with HIV had to worry about in the same way. I mean, they had to take care of themselves. But there was no mechanism by which if they do too much activity they’re exceeding their anaerobic threshold and getting worse. So I think there was something joyous about AIDS advocacy. It was angry, but joyous. It was a cruisy, sexy movement.
SK: There are definitely some inherent difficulties with ME, but I think there might be a little hidden sexiness there.
DT: I mean, I know people who have met through their ME activism. But again, I think most people are doing their activism from home. There’s also the big difference that there’s online activism now that can be done from home, which didn’t exist in the 80s and 90s. Everything was analog then. There was no digital. You had to get analog arrested. You had to be physically there. But now you can do things differently. You couldn’t have ME organizing without online. The tools of online make it much easier. I couldn’t have done my project on Virology Blog 30 years ago. I wouldn’t have anywhere to publish. It’s a better environment now but it’s still very hard to get stuff about any of this published. Editors are totally uninterested.
SK: You’re telling me.
DT: So what’s your background?
SK: Well, I’ve been sick for a very long time. I got mono when I was a senior in high school and developed ME over the following year. I’m 30 years old now. Kind of self-taught. Started writing at a certain point and that’s basically what I’ve been doing the last few years.
DT: So have you been able to work, really?
SK: I haven’t worked a regular job in a while. I got sick when I was 18 but I kept trying to work and push through it, had a period of remission for about a year when I was 19-20. But as you know, pushing through just makes it worse in the long term. Ended up relapsing, and just couldn’t get my ducks in a row, complications kept mounting.
DT: So how’s your health at the moment?
SK: Quite poor. It’s definitely been trending downwards for many years now.
DT: Can you do anything — will even this conversation cause a crash?
SK: Yeah, I’ll probably crash from this. I can write some, but it takes forever and it’s just a very exhaustive process that requires a lot of note-taking and comes out excruciatingly slow.
DT: Well, I don’t really know what to say exactly. That’s awful. I’m sorry you have to deal with this. I don’t really have any advice for you.
SK: Well you’ve been very helpful to my understanding of my own disease, so I really appreciate that.
DT: I’m really only in the business of saying what it’s not. I really have no idea what ME is or what it’s like. I really just say this research is bullshit, that this entire field of research is just nonsense. But beyond that, what it is, whether it’s this or that, I have no idea.
SK: You’re asking me about myself now and I’m just thinking about the larger patient story. Do you sense a shift, and do you think this will be the type of thing we look back on in decades and think, ‘how the hell could this happen?’ Like, how could such a serious disease be denied for so long?
DT: I think so. I don’t know if it’ll be that black and white like with HIV, because again it’s probably a cluster of related illnesses. There probably won’t be one discovery.
But there’s a whole thing about the psychosomatic view of disease. ME has come in both epidemic form in clusters and in sporadic form like in your case. What strikes me here is that it’s understandable to see an individual patient who may have some kind of psychological issue causing their symptoms. But when you see millions of people all around the world having similar experiences after a viral infection — when we’ve always known that viral illnesses leave a certain percentage of people with permanent damage or sequelae or long term deficits and disability — what I don’t understand is assuming, ‘wow, I guess all these people are having mass hysteria or some kind of PTSD or anxiety.’ As opposed to people all around the world in different countries are experiencing some form of chronic illness from infection. What I’m saying is, it’s understandable that a doctor might see an individual patient and think that person is suffering from a psychosomatic disorder. It’s hard for me to imagine a world where people are suffering from the same symptoms in the same way, everywhere, and thinking they’re all suffering from a psychosomatic disorder or a hysterical reaction. That’s what I have a hard time understanding.
SK: I have a hard time understanding it, too. The tendency. And, I don’t know, just psychosomatic medicine in general I’m a bit skeptical of. It just seems like there are physical diseases and there are mental illnesses and I don’t really see the gray area.
DT: It is kind of a gray area. For instance, things like inflammation can cause depression. There are obviously things that go back and forth between psychological and physical states. If you’re depressed, of course you’re going to be fatigued. That doesn’t mean everyone who’s fatigued is suffering from depression. There’s some sense to the psychosomatic paradigm in that obviously mood states can trigger bodily sensations. That doesn’t mean every bodily sensation we don’t understand is triggered by a mood state. So the basic fact is true. But you can’t extend that to everybody and just assume that because it’s possible that means everyone who’s experiencing symptoms you don’t understand is having a psychosomatic reaction. That’s a fallacy.
So it’s not that I think there’s no such thing as psychological issues leading to physical symptoms. Obviously there is. Stress causes bad things. If you have constant stress, you’re going to develop long term chronic problems. But that’s not the same as saying chronic stress is causing these particular health issues in people who didn’t seem to have any history of stress.
SK: But even there, it’s still kind of a duality, no? You can still sort of demarcate physical from emotional pain. But in terms of treatment, what is the efficacy of psychosomatic medicine? I mean, there’s therapy, there’s exercise and other lifestyle interventions, and then there’s more conventional medicine.
DT: And all the people pushing therapy and exercise for ME/CFS are saying these treatments work but anyone who’s smart says, ‘no that’s just showing you have a placebo effect.’ It’s hard to study things, you know. So the question is how you study things for which you have no clear biomarkers. And there isn’t really a lot to show for psychosomatic interventions, as far as I can tell. The studies that are put forward in this domain are for the most part bullshit.
SK: Lightning Process, type stuff?
DT: Hey, you know, the Lighting Process includes things like meditation. I mean, it includes some good things. It’s not like they’re bad in and of themselves. Many of these brain retraining programs are fine in and of themselves. But if you have a pathophysiological illness, they’re not going to cure it. They might make you feel mentally or emotionally better but they’re not going to fix your disease. If in three days you’re completely better from one of these programs, well, then you didn’t have whatever we think ME is.
SK: And I think people with these conditions would be more open to the psychological side if it wasn’t put out as the cause and cure of the disease.
DT: Well, that’s what the new NICE guidelines say. Nobody objects to cognitive behavioral therapy per se. I mean, some people do. But no one really objects to psychotherapy, reasonably, per se. If it’s used to help you adapt to your circumstances. The problem is the specific form of psychotherapy designed for this disease to help alleviate you of your “unhelpful” or “dysfunctional” beliefs about having an organic illness — if it’s meant to convince you that you don’t have the illness that you have. And one of the problems with these studies is they give people psychotherapy and say they feel better, well of course they do. Anyone who gets psychotherapy or someone to talk to them an hour a week, at the end of it, even if they have no problems at all, are going to say they feel better. So the idea that people say they feel better in some generic way is really not proof that this is working to cure their illness, even though it’s treated as though it is.
SK: Last thing I’ll say, and something you’ve talked about, is that this disease can look from the outside like mental illness because the patient is clearly distressed, so it just looks like they have some psychological problem.
DT: Well, there’s also a lot of conflation of association and causation, which is essentially what you’re saying. Of course patients are depressed. Of course there’s an association between depression and these illnesses. But these people always interpret that as causation in their favored direction, that the depression is causing the illness. And the obvious is that, if you have an illness nobody understands, of course you’re going to be depressed. And of course that will then exacerbate it, in the sense that depression exacerbates everything. So yeah, getting some psychotherapy might help them. It might make them feel better in some way. But it’s not going to cure their illness.
Great interview — thank you 🙏