‘Tied’ with heart disease, cancer, says book

April 12, 2023 — Filmmaker Gez Medinger and immunologist Danny Altmann have been dubbed by British media as “Covid Odd Couple,” and it doesn’t bother them at all. Talking about their latest book, The Long COVID Handbookthe authors delve into their animated roles: Medinger is an avid patient-researcher and “guinea pig” (his words) seeking his own cure, and Altmann is a no-nonsense, data-driven scientist and “boring professor” (as he says so).

And the message they have about the impact of long COVID is staggering.

“The clinical burden [of long COVID] is somewhere on par with all of heart disease, or all of oncology, which are our biggest clinical bills simultaneously,” Altmann said.

The couple met at the start of the pandemic, after Medinger was infected during the first wave and interviewed Altmann for his Youtube channelwhich has over 5 million views.

“Danny was one of the first people in the medical facility to stand up on the parapet and wave a flag and say, ‘Hey, guys, there’s a problem here. And that was incredibly validated for 2 million people in the UK alone who were suffering from long COVID,” Medinger said.

Their relationship is working, not only to publish one of the first definitive guides to the long COVID, but also as a model for how patients with lived experiences can lead the way in medicine – from naming the condition to lead the medical establishment in recognition, clinical research and therapeutic answers.

With Altmann currently in charge a major research project at Imperial College London on the longstanding social media platform and communication skills of COVID and Medinger, they are both advancing global understanding of the disease in their own unique ways.

“We are now over 3 years into this completely mysterious and unexplored disease process with a whole world filled with truly desperate people,” Altmann said. “It’s a living, organic thing, and yet it also demands a kind of order and collation and coming together in a kind of sense. So I was very happy when Gez approached me to help him with the book.

In it, they translate everything they’ve learned about the condition which is “scattered in 100,000 places around the world” into a digestible format. He tells two sides of the same story: the anecdotal experiences that Medinger has undergone 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 piling up 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 fight the long COVID.

What are the key points of the book for you?

Medinger: “I would say we’ve put together some incredibly comprehensive chapters on the assumptions, the big picture, what’s causing the long COVID. And then the painstaking research for whatever we’ve discovered happens. …And the other part of the book that I think is particularly important, beyond the tips for managing symptoms, is the mental health content and the impact on your emotional state and your ability and to how huge. … It was the most powerful thing for patients when they read it. And they said they just cried through those chapters because suddenly they felt heard and seen.

Altman: “Obviously, you’d expect me to say that the parts of the book I love the most are the kind of inflexible, medical, mechanistic bits. … We have over 150 million desperate people deciding whether or not to go to their GP, whether to be heard fairly or not. And the poor doctor never learned that in medical school, never read a textbook about it, and has no idea what’s going on at the door.

How do they expect them to know what to do? So I think the least we can do in some of these chapters is fuel their general medical knowledge and give them some clues. … I think if we can explain to people what might be going on inside them, and to their doctors, what they might do about it, what kind of tests they might order, that helps a little 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 chilling warning. But Danny, you were nervous about even mentioning unproven and potentially dangerous treatments as things that people have tried and reviewed.

Medinger: “We had to try to figure out how to deal with the subject, how to manage these points of view, while remaining informative. I think the book is stronger for this chapter too. The other thing definitely would have been not to bring up the subject, but it’s one of the things people want to know the most about. And there is also a lot of bad information circulating about certain treatments. Ivermectin, for example, and that’s what happened to me when I tried it. ‘Do not do it. It is not recommended. Please don’t.

I think it was really important to include that as well, because that caveat really applies to every one of those treatments that people might hear about that haven’t been backed up by studies of effectiveness and efficacy. safety.

Altman: “I think Gez was quite diplomatic. This chapter was, I think, a testament to the power of the book. And the biggest test of our marriage as an “odd couple”. Because when I first read the first draft of what Gez had written, I said, “My name can’t even be on that book.” Otherwise, I will be fired.

And we had to find marriage advice after that, and a way to go back to write a version of this 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 see as the most urgent next steps in finding a solution to the long COVID?

Medinger: “Personally, I would like to try to get some sort of answer on viral persistence. …If there’s one thing that seems to be treatable in theory, and that would make sense why we still have all these symptoms all this time later, it’s this, so I’d like to try to establish or d eliminate virus persistence. So if you gave me Elon Musk’s wealth, that’s what I would give a lot of money to, trying to either eliminate it or establish it.

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 drugs on this so we have an educated guess as to what might work and put them in high powered randomized controlled trials and see if anything comes out because from the patient’s perspective I don’t think that None of us want to wait 5 years for this stuff to start happening.

Altman: “I completely agree. If you go to a website, like clinicaltrials.gov, you will find an immense number of clinical trials on COVID. There really isn’t a shortage of them, some of them are more powerful than others in getting a response.

How do you think public policy needs to adapt for a long time to COVID, including social safety nets such as workers’ compensation and disability benefits?

Medinger: “In terms of public policy, what I would like is public acknowledgment that this is real from government sources. Just the recognition that it is real and remains a risk even now.

Altman: “No one in politics asks me for my opinion. I think they would hate to hear it. Because if I went to them and said, well, actually, if you thought the COVID pandemic was bad, wait until you see what’s on the table now. We have created a disabled population in our country of 2 million, at least some if not more people who no longer fully contribute to the workforce… [with] legal wrangling over retirement, health insurance and pensions, and the 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 both showed so much optimism. Why is that?

Altman: “I’ve been an immunologist for a long time now, and I’ve written all my decades of grant applications, where as a community we’ve done what, at the time, were kind of outlandish promises and wildly optimistic projections about how our knowledge of antitumor immunity would revolutionize the management of cancer, and how knowledge of autoimmunity would revolutionize the management of all autoimmune diseases.

And strangely, 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 have faith that these things happened, I also have complete faith in this.

Medinger: “From a patient perspective, what I would say is that we see people who have been sick for more than 2 years recover. People suddenly turn the corner when maybe they weren’t expecting it.

And while we don’t yet know exactly why, and it’s not everyone, every time I hear the story of someone who says, “I’m pretty much back to where I was. , I feel like I’ve recovered”, I feel good. Even though I didn’t. Because I know that every time I hear someone say that, it just increases the likelihood that I’ll do it too.

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