April 12, 2023 – Filmmaker Gez Medinger and immunologist Danny Altmann were named by the British media as “COVID’s odd couple”, and it doesn't trouble her in any respect. When discussing her latest book, The Long COVID Handbookthe authors immerse themselves of their animated roles: Medinger is a passionate, patient researcher and “guinea pig” (his words) seeking his own healing and Altmann is a matter-of-fact, data-driven scientist and “Professor Bore” (as he puts it).
And her message in regards to the impact of Long COVID is stunning.
“The clinical burden [of long COVID] is roughly on a par with the entire field of heart disease or oncology, which at the same time cause our greatest medical costs,” said Altmann.
The two met at the beginning of the pandemic, after Medinger was infected during the first wave and Altmann was looking for his Youtube channelwhich has over 5 million views.
“Danny was one of the first people in the medical establishment to stand on the parapet, wave a flag and say, 'Hey guys, there's a problem here.' And that was an incredible validation for the 2 million people in the UK alone who were suffering from Long Covid,” Medinger said.
Their relationship works not only because it published one of the first definitive guides to Long COVID, but also as a model for how patients can use their own experiences to lead the way in medicine – from naming the disease to pushing the medical establishment for recognition, clinical research and therapeutic answers.
With Altmann as current a major research project at Imperial College London on Long COVID, and Medinger's social media platform and communication skills both contribute to the global understanding of the disease in their own ways.
“We've been in this totally mysterious, unexplored disease process for more than three years now, with a whole globe full of really desperate people,” Altmann said. “It's a living, organic thing, and yet it also requires a kind of ordering and assembling and bringing together into some sense. So I was very pleased when Gez asked me to help him with the book.”
In it, they translate everything they have learned about the disease, which is widespread in “100,000 places around the world,” right into a digestible format. It tells two sides of the same story: the anecdotal experiences Medinger has had or observed in the Long COVID community through more than a dozen of his own patient-led studies, as well as the hard science and research evidence accumulating in the medical world.
In the interview, Medinger and Altmann talk about how their book can help patients and doctors and what next steps are necessary in the fight against Long COVID.
What do you think are the most important findings of the book?
Medinger: “I might say we've put together some incredibly comprehensive chapters on the hypotheses, the larger picture, the causes of Long COVID. And then the detailed research on every thing we've discovered and what's happening immediately. … And the opposite a part of the book that I believe is especially essential, along with the ideas on managing the symptoms, is the content on mental health and the impact in your emotional state and your performance and the way big that’s. … That was essentially the most impressive thing for the patients once they read it. And they said they simply cried throughout those chapters because they suddenly felt heard and seen.”
Altman: “Of course, you expect me to like the parts of the book essentially the most, the hard-hitting, medical, mechanistic bits. … We have over 150 million desperate people who find themselves deciding or not deciding to go to their primary care doctor, who’re getting a good hearing or not. And the poor doctor never learned this in medical school, never read a textbook on it, and has no idea what to anticipate.
How are they speculated to know what to do? I believe the least we are able to do in a few of these chapters is to expand their knowledge of general medicine and provides them some pointers. … I believe if we are able to explain to people what's happening inside them and to their doctors what on earth they will do about it, what sort of tests they may order, that helps slightly bit.”
How did you balance the more controversial parts of the book, including the chapter on so-called “treatments”? For example, the book recounts Gez's harrowing experience with ivermectin as a scary warning. But Danny, you were nervous about mentioning unproven and potentially dangerous treatments as things that people have tried and investigated.
Medinger: “We needed to determine easy methods to cope with the topic, easy methods to cope with those viewpoints while remaining informative. I believe the book can also be stronger due to that chapter. The other option will surely have been to simply not address the topic, nevertheless it's certainly one of the things that folks most need to find out about. And there's also loads of misinformation going around about certain treatments. For example, about ivermectin, and that's what happened to me after I tried it. 'Don't do it. It's not really useful. Please don't do it.'
I believe it was also very essential to incorporate this because this cautionary tale really applies to each certainly one of these treatments that folks may hear about but for which there aren’t any efficacy and safety studies.”
Altman: “I believe Gez was quite diplomatic. This chapter was, for my part, a testament to the facility of the book. And the largest test of our marriage as 'the odd couple'. Because after I read the primary draft of Gez's text, I said, 'My name can't even be on this book. Otherwise I'll be fired.'”
And after that, we had to go to marriage counseling and find 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 points of view. And I think that makes it a pretty strong chapter.”
What do you think that are essentially the most urgent next steps find an answer to Long-COVID?
Medinger: “Personally, I would like to try to find an answer to the question of viral persistence. … If there is one thing that seems theoretically treatable and that explains why we still have all these symptoms after so long, it is this. So I would like to try to establish or eliminate viral persistence. So if you gave me Elon Musk's fortune, I would spend a ton of money trying to either eliminate or establish this.
And then, you understand, the opposite essential thing is a diagnostic test. Danny all the time talks about how essential it’s. When you’ve it, it suddenly opens the doors to all the opposite things you’ll be able to do. And treatment trials. Let's put some drugs on it so we’ve an informed guess about what might work and put it into high-powered randomized controlled trials and see if anything comes out of it, because from a patient perspective, I don't think any of us need to wait 5 years for this stuff to start out working.”
Altman: “I completely agree. When you visit a website like clinicaltrials.govyou'll find an immense number of clinical trials on COVID. There's not really a shortage of them, and some of them are better suited to finding an answer than others.”
How do you think that public policies have to adapt to Long COVID, including social safety nets reminiscent of employees' compensation and disability advantages?
Medinger: “From a political perspective, I would like to see the government publicly acknowledge that the problem exists. Simply acknowledge that the problem exists and that it still poses a risk.”
Altman: “Nobody in politics asks me for my opinion. I believe they might hate to listen to it. Because if I went to them and said, “Well, if you thought the COVID pandemic was bad, wait and see what's on the table now. We've created a disabled population of 2 million people in our country, at least a portion, if not more, of people who are no longer fully employed…” [with] Legal disputes over pensions, medical insurance and retirement advantages, and a human right to adequate healthcare. Ideally, which means a specially arrange clinic where they will get their opinion on respiratory diseases, rheumatology, endocrinology and neurology under one roof.”
You have both shown so much optimism. Why is that?
Altman: “I even have been an immunologist for a very long time now, and over the a long time I even have written all of my grant proposals during which we as a community on the time made pretty wild guarantees and overly optimistic predictions about how our knowledge of tumor immunity would revolutionize cancer treatment and the way knowledge of autoimmunity would revolutionize the treatment of all autoimmune diseases.
And strangely enough, almost every word we've written in those 25 or 30 years has come true. Cancer immunotherapy has been revolutionized, and biologics for diabetes, multiple sclerosis and arthritis have been revolutionized. So if I consider that this stuff have come true, then I even have full confidence in that, too.”
Medinger: “From a patient perspective, I might say we’re seeing individuals who have been sick for greater than two years and are recovering. People are suddenly in a position to turn things around when they won’t have expected it.
And while we don't yet know exactly why that’s, and it doesn't occur to everyone, I feel great each time I hear someone say, “I'm pretty much back to where I was, I feel like I've recovered,” even when I haven't. Because I do know that each time I hear someone say that, the likelihood of me recuperating increases.”