April 12, 2023 -- Filmmaker Gez Medinger and immunologist Danny Altmann have been dubbed by British media as “COVID’s odd couple,” and they don’t mind at all. Discussing their recent book, The Long COVID Handbook, the authors lean into their animated roles: Medinger is a passionate patient-researcher and “guinea pig” (his words) in search of his own healing, and Altmann is a no-nonsense, data-driven scientist and “Professor Boring” (as he puts it).
And the message they have about the impact of long COVID is stunning.
“The clinical burden [of long COVID] is somewhere on par with the whole of heart disease all over again, or the whole of oncology all over again, which are our biggest clinical bills concurrently,” Altmann said.
The pair met early in the pandemic, after Medinger became infected during the first wave and interviewed Altmann for his YouTube channel, which has more than 5 million views.
“Danny was one of the first people from the medical establishment to sort of stand up on the parapet and wave a flag and say, ‘Hey, guys, there’s a problem here.’ And that was incredibly validating for 2 million people in the U.K. alone who were suffering with long COVID,” Medinger said.
Their relationship works, not just for publishing one of the first definitive guides to long COVID, but also as a model for how patients with lived experiences can lead the way in medicine — from giving the condition its name to driving the medical establishment for recognition, clinical research, and therapeutic answers.
With Altmann currently leading a major research project at Imperial College London on long COVID and Medinger’s social media platform and communication skills, they’re both advancing the world’s understanding of the disease in their own way.
“We’re now more than 3 years into this completely mysterious, uncharted disease process with a whole globe full of really desperate people,” said Altmann. “It’s a living, organic thing, and yet that also demands some kind of order and collation and pulling together into some kind of sense. So I was very pleased when Gez approached me to help him with the book.”
In it, they translate everything they’ve learned about the condition that’s “scattered in 100,000 places around the globe” into a digestible format. It tells two sides of the same story: the anecdotal experiences Medinger has undergone or observed in the long COVID community through more than a dozen of his own patient-led studies, as well the hard science and research that’s amassing in the medical world.
In an interview, Medinger and Altmann discussed how their book can help both patients and clinicians, and the next steps needed to combat long COVID.
What are the book’s key takeaways for you?
Medinger: “I would say we put together an incredibly comprehensive couple of chapters on the hypotheses, big picture, what's causing long COVID. And then the nitty-gritty research for everything that we've found out that is going on. ... And the other part of the book that I think is particularly important, beyond the tips for managing symptoms, is the content on mental health and the impact on your emotional state and your capacity and just how huge that is. ... That has been the most powerful thing for patients when they've read it. And they've said that they've just been crying all the way through those chapters because suddenly they feel heard and seen.”
Altmann: “Obviously, you'd expect me to say that the parts of the book that I love most are the kind of hard-nosed, medical, mechanistic bits. ... We've got 150 million-plus desperate people deciding or not deciding to go and see their general practitioner, getting a fair hearing or not getting a fair hearing. And the poor doctor has never learned this in medical school, has never read a textbook on it, and hasn't a clue what's coming through the door.
How are they expected to know what to do? So I think the least we can do in some of those chapters is feed into their knowledge of general medicine and give them some clues. ... I think if we can explain to people what might be going on in them, and to their doctors, what on earth they might do about it, what kind of tests they might order, that helps a bit.”
How did you balance the more controversial parts of the book, including the chapter about so-called "treatments"? For instance, the book recounts Gez's harrowing experience with ivermectin as a frightening warning. But Danny, you were nervous about even mentioning unproven and potentially dangerous treatments as things people have tried and have looked into.
Medinger: “We had to try and work out how to handle the topic, how to handle those points of view, whilst at the same time still being informative. I think the book is stronger for that chapter, too. The other thing would certainly have been to just not address the subject, but it's one of the things that people want to know the most about. And there's also a lot of bad information floating around out there about certain treatments. Ivermectin, for example, and this is what happened to me when I tried it. ‘Don't do it. It's not recommended. Please don't.’
I think it was also very important to include because that cautionary tale really applies to every single one of those treatments that people might be hearing about that hasn't been backed up by efficacy and safety studies.”
Altmann: “I think Gez has been quite diplomatic. That chapter was, I think, a testament to the power of the book. And the biggest test of our marriage as ‘the odd couple.’ Because when I first read the first draft of what Gez had written, I said, 'my name can't even be on this book. Otherwise, I'll be sacked.'
And we had to find marriage counseling after that, and a way back to write a version of that chapter that expressed both halves of those concerns in a way that did justice to those different viewpoints. And I think that makes it quite a strong chapter.”
What do you think are the most urgent next steps in the search for solving long COVID?
Medinger: “I would personally like to try and get some sort of answer on viral persistence. ... If there's one thing that feels like it would be treatable in theory, and would make sense why we're still getting all of these symptoms this whole time later, it's that, so I would like to try and establish or eliminate viral persistence. So if you gave me Elon Musk's wealth, that's what I would throw a bunch of the money at, trying to either eliminate or establish that.
And then, you know, the other important thing is a diagnostic test. Danny always talks about how important it is. Once you have that, it helps you suddenly open the doors to all these other things that you can do. And treatment trials. Let's throw some meds at this so that we have an educated guess at what might work and put them into high-powered, randomized, controlled trials and see if anything comes out because from the patient perspective, I don't think any of us wants to wait for 5 years for that stuff to start happening.”
Altmann: “I completely agree. If you go to a website, like clinicaltrials.gov, you'll find an immense number of clinical trials on COVID. There isn't really a shortage of them, some of them better-powered to get an answer than others.”
How do you think public policy needs to adapt for long COVID, including social safety nets such as workers’ compensation and disability benefits?
Medinger: “In terms of public policy, what I would like would be some public acknowledgement that it's real from government sources. Just the acknowledgement that it's real and it remains a risk even now.”
Altmann: “Nobody in politics asks my opinion. I think they'd hate to hear it. Because if I went to see them and said, well, actually, if you thought the COVID pandemic was bad, wait till you see what's on the table now. We've created a disabled population in our country of 2 million, at least a portion if not more of people who are not fully contributory to the workforce anymore ... [with] legal wrangles about retirement and health insurance and pensions, and a human right to adequate health care. Which means, ideally, a purpose-built clinic where they can have their respiratory opinion and their rheumatology opinion and their endocrine opinion and their neurology opinion, all under one roof.”
You’ve both shown so much optimism. Why is that?
Altmann: “I've been an immunologist for a long time now, and written all my decades of grant applications, where as a community we made what, at the time, were kind of wild promises and wildly optimistic projections of how our knowledge of tumor immunity would revolutionize cancer care, and how knowledge of autoimmunity would revolutionize care of all the autoimmune diseases.
And weirdly almost every word we wrote over those 25 or 30 years came true. Cancer immunotherapy was revolutionized, and biologics for diabetes, multiple sclerosis, and arthritis were revolutionized. So if I have faith that those things came true, I have complete faith in this as well.”
Medinger: “From the patient perspective, what I would say is that we are seeing people who've been ill for more than 2 years recover. People are suddenly turning the corner when they might not have expected to.
And while we don't quite know exactly why yet, and it's not everyone, every single time I hear the story of someone saying, ‘I'm pretty much back to where I was, I feel like I've recovered,’ I feel great. Even if I haven't. Because I know that every single time I hear someone say that, that just increases the probability that I will, too.”