Wilder: So, Gregg, the HIV world is familiar with disinformation campaigns. In the 1990s, disinformation spread about HIV and AIDS via people who were referred to as AIDS denialists. Can you talk a little bit about that and, specifically, what happened in particular parts of the world?
Gregg Gonsalves: There are two areas of AIDS denialism around the epidemic. The first was sort of homegrown in the United States, promoted by people like Peter Duesberg, who was once a respected scientist; people who worked for magazines like Spin, like Celia Farber and others, which basically said HIV is not the cause of AIDS; that the drugs we’d take back then, like AZT and others, were poison, and everybody else was wrong.
It’s very similar to what Judy Mikovits does in Plandemic. And it similarly told people what they wanted to hear. You didn’t have to worry about that antibody test you got that said you were HIV positive, because there was nothing wrong with you that often alternative and holistic therapies couldn’t fix, or some lifestyle change. And it also played into paranoia about the pharmaceutical industry, biomedical research, where there’s medical experimentation happening on people and the drug companies are peddling these drugs to make money, not to cure the disease. It sort of petered out after 1996, when we had highly effective antiretroviral therapy in the U.S. for HIV, because everybody thought people would rise from their deathbeds. And, in fact, these drugs that sort of inhibited HIV were keeping people alive, when they were dying in droves before then.
But what happened in the rest of the world, including in South Africa, is the president of South Africa, Thabo Mbeki, was looking on the internet one night and found the work of Peter Duesberg and these other AIDS denialists, and made it national policy—in fact, “HIV doesn’t cause AIDS, and AZT is poison,” became the mantra for his administration, in fact denying women the chance to use antiretroviral therapy to prevent HIV transmission from themselves to infants, in utero and during childbirth—and keeping him from instituting and establishing a national HIV treatment plan for many years.
A Harvard study said that several hundred thousand people probably died from this sort of foot dragging when Thabo Mbeki was in the sway of these AIDS denialists. It’s hard to understand why he—a smart, well-regarded freedom fighter and leader in South Africa—got tangled up in these conspiracy theories. I’m not going to try to speculate on his psychology. But remember, they had just come out of years under apartheid. So the last thing the new ANC [African National Congress] definitely needed was a pandemic to worry about in their own backyard, which would put strains on their health care system, even beyond what they had to do to make health care more equitable in the country to begin with.
Wilder: In Plandemic, the 26-minute trailer, Judy Mikovits is the main “character” in the video. Who is Judy Mikovits?
Gonsalves: You know, the funny thing is, in the beginning of the quote, unquote, documentary it talks about her, sort of, tremendous contribution to the fight against AIDS, and her seminal discoveries in AIDS research. And I’m like, jeez—I’ve been around for 40 years watching the epidemic, and never heard of her.
And I dug a little deeper. And she was a lab technician at NCI [National Cancer Institute]. She did a little bit of work here and there, then went on to work on chronic fatigue syndrome; had a paper that suggested that one of the murine leukemia viruses—murine retrovirus was responsible for chronic fatigue syndrome. It had to be retracted, even though the initial paper went into Science. Because other research couldn’t repeat her results. And even her coauthors were suggesting that there’s lab contamination, and the results of the paper weren’t valid, even from their perspective.
She then got into a whole bunch of trouble with one of the chronic fatigue syndrome organizations, where she was accused of stealing laboratory notebooks and a computer. She ended up doing five days in jail and, by the time the video is over, they want you to think she’s Nelson Mandela and, you know, she’s making her long walk to freedom. You know, she was in jail for five days.
But, again, this is a classic trope of the misunderstood genius who knows everything is—knows what the answer is, when we were all wrong, and that she’s been persecuted wrongly by journal editors, by National Institutes of Health figures, by the organizations she worked for. It’s a classic trope of, you know, They tried to shut me up. They fired me. They put me in jail. They did X, Y, and Z.
But, you know, listening to the video, it’s just slightly incredible. Every claim that was brought up, you wanted to slap your forehead in disbelief. We could go through them if you want.
Brea: He’s right. First, going back to Thabo Mbeki, it’s so interesting to hear you share that story, because it is such a good example of what I described, about why disinformation campaigns are so attractive. I think that when you are intentionally trying to seed one, you’re telling a story that is solving a problem for someone. And I think that as an individual it can be an emotional problem, a sense of insecurity and uncertainty in a scary world, or a scary situation, or with health challenges that they are facing that they don’t know how to overcome. And in South Africa, it actually was also, in some sense, solving a political problem. It was better to believe that HIV did not exist than to actually grapple with the full impact that it was going to have on what at the time was a fragile country. I had to say this, because this shit is so. … And so I think that’s really very interesting, and in particular because I think these campaigns do tend to prey on people who are vulnerable. And whether it’s because they don’t have access to the care they need, and so we need to feed alternative explanations, or at least in our community (ME), people might have brain fog, where it’s very difficult to read a wide range of sources and explanations. And all those things make people more susceptible.
The other thing that I think is interesting about what you shared was—you’re talking about Judy Mikovits, as well as the South Africa example—and this is something that I’m trying to get my head around—that there are a lot of things happening now that we believe are new, right? And so much of the center of discussion, public discussion, about disinformation campaigns, whether it’s Russian involvement in the 2016 election, or the evidence that we have now that Russia, China, Iran, domestic right-wing groups, were all involved in COVID-19 disinformation; it’s so tied with the discussion of the technology, which, you know, yes, does enable the disinformation to spread. But the reality is that disinformation has always been with us in different forms, and disinformation or propaganda existed long before the internet, and were used in very smart, particular ways.
I think the story that you told about the fears people have about medicine and the way that narratives around alternative health [work] shows a lot of really interesting parallels. It’s helpful to see in both what is different about these very different contexts and moments in history and social times as this thing where things would have to change, and the way that the playbook is actually still very similar.
Wilder: Jen, your organization #MEAction actually released a press release after Plandemic came out, in which you are quoted as saying, “COVID-19 disinformation is a threat to public health at large but is especially damaging to vulnerable chronic illness and disabled communities.” And so, I’d be curious to hear from both you and Gregg—in what ways is COVID disinformation specifically damaging to people with chronic illness and disabled communities?
Brea: I think it’s some of what I just referred to around people’s physical and cognitive abilities. I want to be really careful about not—you know, of denying people their agency. But we in the ME community all know that there are a lot of us who have limited access to information. And the limit on that access is around health. You know, there is some that are so specific that if they do go online, that they’ll need to be there for a short period of time. Maybe they can only watch videos, and reading isn’t acceptable, or vice versa.
But I feel like one of the ways that you protect yourself against disinformation is having access to a wide range of information. And I think that can be very difficult when you are disabled in the ways that we are.
I think the other reason why disabled and chronic illness communities are particularly vulnerable is that—especially to disinformation—when you have a person who has proclaimed herself a champion of people who are chronically ill, delivering a piece of information that is fundamentally anti-science, but sort of promising a solution to a group of people in the midst of a pandemic of a novel virus that is deadly and disabling, when our community—other communities—are already at high risk, right?
So I think we were already at risk from the virus. And so encouraging us to engage in behaviors that might put us at even greater risk just compounds the harm and also the likelihood that we all contract the virus and have potentially serious health outcomes.
Wilder: And, Gregg, any thoughts that you have about disinformation specifically being particularly damaging to people who have chronic illness or already have a disability?
Gonsalves: We know the risks for COVID-19 for giving serious complications of SARS-CoV-2 are compounded with people who have preexisting conditions. Not all of them, but it compromises the immune system to put stress on respiratory function or other stressors, stresses on your immune system. Like, in a breast cancer survivor who just went through chemo, for instance. So, the misinformation on COVID is pretty intense.
There’s a whole crazy part in Plandemic about, we don’t need masks. We don’t need to shelter in place. You know, if you shelter in place, you’re separating yourself from the bacteria and the viruses that strengthen your immune system, and your immunity drops. Why is anybody wearing a mask? We shouldn’t be wearing masks; we shouldn’t be sheltering in place—because your immunity drops. You need to be, you know, bathing in bacteria and viruses to keep your immune system healthy. And these are two doctors from California who are featured in the piece.
It also starts to sort of create—you know, people with disabilities and chronic illnesses are making treatment decisions all the time. And there are two episodes in Plandemic that sent me over the deep end. One is about hydroxychloroquine, where Judy Mikovits says there’s a thousand pages of research on hydroxychloroquine and malaria. And calls it essential medicine. And Tony Fauci is saying there’s only anecdotal evidence to support it.
I mean, it was just a twisted logic. First of all, it’s essential medicine for malaria, not for COVID-19. The fact that there’s a thousand pages of research, or more; it’s not helpful because it’s, again, it’s an antimalarial drug. So, she’s touting this drug that we have no data back then that it worked; and now we have data that suggests that it’s probably not a good idea to take it.
Then she went on this whole sort of harangue about suramin for autism—a drug that actually was tried out for HIV but was one of the classic studies in HIV research, where they had to pull the plug because it was killing people. More people were dying on the treatment arm than died on the placebo arm, right? You know, it was actually a drug that was actively detrimental to the health of people who were immunocompromised.
And so, you know, if you’re trying to manage a chronic illness—I’ve been living with HIV for, you know, over 20 years now—you’re trying to sort of figure out what is the right thing to do to protect your health, to avoid any complications that might be associated with other new diseases like COVID-19. And you need sound medical advice.
As I sat there for 25 minutes this morning, watching this Plandemic, I realized part of me thought it was almost comical in the way it was presenting her—with stock footage of SWAT teams arriving in her house to send her off to jail, to her, sort of, public appearances with rousing applause from, you know, an audience of 20. I thought it was comical.
And then I thought, you know, thousands of people watched that video, maybe tens of thousands of people watched that video. And we’ve been working hard to keep people safe from COVID-19. We’ve been working hard to keep people making reasonable choices for themselves and their families. And the narcissism involved in taking your perceived persecution, 20, 30 years ago, and sort of whipping it up into this mythology that exonerates you from all blame for the problems in your life and the wrong things you did—and puts other people at risk—just, just, moved it from being a joke of a movie to sort of a deep injustice and offense to anybody who has any feeling for other people.
It’s really a deeply narcissistic, pathological piece of work.
Wilder: Yeah. I agree with you. I was particularly shocked about the piece where she said something to the effect of, “Wearing a mask literally activates your own virus. You’re getting sick from your own reactivated coronavirus expressions.”
I was in shock and was particularly concerned, because masks are one of the very few harm-reduction tools that we have as we’re dealing with COVID-19. So, I always find it interesting when people make these kinds of bold statements that people might believe. Because Judy has Ph.D. behind her name, and we clearly know why that’s done in the movie. Society believes a lot of times doctors are the truth, or people with higher degrees know things, and it gives the film validity.
So, it’s clearly a strategy to have these people be perceived as the authority. And since we’re really socialized to trust the word of doctors and scientists, it’s a hook for people watching. They automatically believe them, and may not be coming from, you know, critical thinking.
Having said that, how can we help people identify disinformation?
Brea: Just to respond to what you just said, Terri, I think it’s absolutely true that part of what’s so insidious about Plandemic, in particular, is that a lot of disinformation around COVID-19 is, not only is it relying on and drawing from people’s trust in medicine; but I actually think there’s sort of a kind of flip side that is equally true—which is that it, in fact, has the effect of actually eroding people’s trust in medicine at the same time.
I’m somebody who tends to talk a lot about the individual decisions to be made to participate in this. But I always think a lot about the role of foreign state actors. I think there’s evidence that Russians were involved in some of HIV’s disinformation in the 1980s. I believe that whether they started it, or simply benefited and kind of supported it, those sorts of things were going on for a long time.
I think the bigger picture is that if you think that there are foreign state actors involved, whether it’s China, or Russia, or Iran; I think one of the hard things about disinformation is there’s good evidence of that involvement, in general.
And so, whether foreign state or right wing, I think that there is a larger project to erode people’s trust in science and medicine, in general. And so I actually think that a lot of it is in tracing the seeds, whatever the particulars, [and they] have the same fundamental goal as disinformation on climate change science. It’s just sort of made people so confused about what to believe and to not believe that it sort of increased our fears, increased our uncertainties, and eroded faith in mainstream experts and institutions, especially if there are more successful disinformation conspiracy theories in the future.
And this plays out, and I think in really complicated ways, in both of our communities. Because coming from the activist communities, we have had the experience oftentimes of being on the fringe, of knowing that the mainstream was wrong, of knowing that the mainstream often didn’t support—either didn’t value people’s lives or didn’t support or invest in science.
And so, because we’ve been in that situation, it’s a really complicated thing to sort of say that a lot of the time, mainstream sources—Ph.D.s, M.D.s, federal agents, etc., a lot of the time, they are the source of accurate information. But sometimes they are the source of harmful information. And then this other thing called disinformation that tries to play on that and play on the doubt; and play on past experiences of our communities to sow information that is knowingly, actively untrue and harmful.
And so, I think that that’s—I am concerned about the specifics of COVID, and the risk of how past exposure to disinformation increases infection. But I’m also just concerned about the long run and about what this does to the way that we think about scientific authority and, at the end of the day, we trust science as a process, as a source of something that can help us.
Gonsalves: So, you know, trying to figure out how to deal with the fire hose of information we have around COVID-19, let alone every other thing we’ve been talking about today, is difficult. And it’s much more difficult now than it was when I was growing up, when there were fewer sources of information to sort of—you would buy them on a regular basis.
One thing is to figure out who your sources are. And try to do some thinking about how they’ve responded to other issues. You know, StatNews, for instance, is an aggregate of a lot of health information and health recording. Do they get everything right? No. But, in general, they consist of longtime health reporters who I’ve known and read and trusted for many years. And so when the COVID epidemic broke out, it was one of the first places I turned. Also to people like Jon Cohen and Craig Coopersmith at Science magazine, and other places. This is not making the argument to trust the authority; but by saying, yeah, these people have been reliable reporters on health and science issues for a long time, let me look there first for what I need to find out.
Then the other thing is, triangulate. You don’t just look at your favorite health aggregation site; you click through to see what the studies are that they are talking about. And you try to sort through the information on your own.
I think it’s a question of sort of picking your sources, triangulate among them, and try to make a little continuum in your mind about how credible you think their claims are that you’re trying to evaluate, whether for COVID-19, or for HIV, or for ME. I think that’s the way to do it; that’s how I think I’ve done it over the course of the AIDS epidemic.
And the other thing is to feel like you can ask questions. I was twentysomething and was assigned by ACT UP to work on cryptosporidiosis, a parasitic disease that gives violent diarrhea to people who are immunocompromised, and I called up the Cornell University researcher who was one of the only people in the country who dealt with it. And she was willing to talk with me, because nobody was really interested in her work before.
If you’re really deeply interested in something, you can find people to talk to you who are going to give you more information and can help you learn about it—point you to more resources. And so there are tons of ways of dealing with health information and trying to validate its reliability and its credibility.
The easy ways are to go to sites that have generally been good at what they do and haven’t been, you know, referenced on bullshit on anything else. If you want to go deeper, you can go deeper. But I think the idea is to pick your sources wisely and try to triangulate among them.
Brea: I think what can also be really empowering is to learn about the tactics that these campaigns use, as sort of the shape of the story. Right? I mentioned that bit about a playbook. And there is initially a playbook across many, many different disinformation campaigns—regardless of the specific content, [they] follow a certain set of patterns or best practices, for lack of a better word, and that’s what #MEAction’s disinformation handbook is all about empowering you to understand, not just COVID-19 disinformation, but what does disinformation, in general, look like?
And I think we need to take a step back to be able to see how it operates. You could start to see it, not just in the context of COVID-19, but in the context of the protests against police violence and the Black Lives Matter movement. You can see it in the context of specific political campaigns; and other issues, as they come up.
And so, yes, it can be hard, especially if you’re really emotionally engaged with an issue, to know or believe that what you’re seeing might not be true. But once you learn how to recognize the contours of disinformation, I actually think it becomes very, very easy to spot. And so some of these things—and, again, happy to go in more detail—often, one is just knowing if I’m on Facebook, if I’m on Twitter, there’s a very good chance that I’ve already seen disinformation. It’s sort of out there, everywhere, and it is kind of a part of the environment. At least recognizing it at first is really helpful.
I also think it’s helpful to understand when something is more likely to be disinformation. Disinformation is often highly inflammatory. It sort of hits on the hot-button issues that are already there and that can get people amped up, get people angry, and encourage disagreement and mistrust. And obviously, the internet has always been a kind of rough-and-tumble place, you know. It’s hard to distinguish between normal inflammatory versus, like, I’m trying to provoke you. But I think it seems any time you’re reacting emotionally to something, you can always take a step back and sort of ask yourself the question: Why am I reacting this way? Is this meant to provoke those emotions? And, if so, maybe I should go and try to read alternative viewpoints on this, and/or see if this content has to be fact checked.
I also think that there are certain aspects of conspiracy theories that are often used in these campaigns—for example, that claim to be imparting special, secret knowledge. Like, you know, the mainstream watches and believes this. But I have the truth, and I’m going to share it with you.
And I think people really can find that narrative compelling. Because it feels like not only are they on the inside, but they have access to some information that is going to help them, in what can be very challenging and overwhelming times. So, those are some of those things. I think if you can start to learn some of the tropes and some of the tools that are used, it becomes easier to spot. And then you can be armed to protect yourself and protect others in your community; and to go out and seek the authorities that provide better, more nuanced sources of information.