Gez Medinger is an investigative science journalist and patient advocate for Long Covid. He became ill with Covid in the early days of the pandemic. When he didn’t recover, Gez put his efforts into researching the novel condition of Long Covid and turning his YouTube channel into a huge resource for patients. The ESMH spoke with him ahead of the STOA workshop “Long Covid: Current Realities, Future Directions” which will take place on 30 September.
You suffer from Long Covid. How would you describe what Long Covid is in simple words?
Gez Medinger: This is almost one of the most difficult questions because it’s very hard to sum up Long Covid in simple words; it’s incredibly complex. It’s highly varied, not just in how it presents between person A and person B, but also in severity. There is a vast range of symptoms, which are not constant by themselves. They fluctuate, even within the same individual, from one minute to another, or from one hour to another, or day to day. So, it’s a challenging thing to describe. To help people understand how serious and debilitating it is, we have conducted two studies in the UK comparing Long Covid with advanced lung cancer. In both studies, they found that Long Covid was as severe or worse in impact than advanced lung cancer. When people hear ‘advanced cancer’, they grasp what that means; the problem with Long Covid is that many don’t understand what that entails. So, one of the first things to say when describing it briefly is that if you’re suffering from it, your quality of life can be as bad as it is with advanced cancer.
There are 200 recognised symptoms, but the most commonly experienced ones are fatigue, brain fog, and activity intolerance… All of these, on their own, might seem minor, just feeling a bit tired, having trouble remembering things, or not being able to run as fast as before. But in reality, it’s very different. The fatigue, in particular, is unlike anything else. It’s difficult to find a suitable word because it’s not like normal tiredness.
As a healthy young person in my 20s and 30s, I would do absolutely everything I could to exhaust myself. I used to run my own company, working all-nighters and staying up for 50 hours straight while travelling around the world, dealing with jet lag, and running marathons. Nothing comes close to the fatigue that you feel with Long Covid. It’s absolutely crushing. One of the ways I described it was, it’s like being run over by a truck and then being chloroformed. So, we really need a new word for it because fatigue doesn’t do it justice.
You wrote a book about Long Covid. What are the 3 main takeaways in this book that people should know about Long Covid?
Gez Medinger: So, the first point is that it’s very common. Depending on which statistics you consider, it affects between three and six per cent of the population, and when you extend those figures, the numbers become huge. We’re talking about hundreds of millions across the globe. It’s a significant issue that remains ongoing. It hasn’t vanished. Another point to mention, this isn’t just a problem that appeared during the pandemic. It still exists today, and I’ll explain later why that’s important with some questions. The next thing to observe is that, unlike most other conditions, there is no test to diagnose it, no treatment to eliminate it, and no clear prognosis. These factors make managing the condition very difficult. From the patient’s view, because there’s no test, people often say, “I don’t believe you have it. It’s not real,” which is a form of gaslighting. This also occurs within medical settings, and many have had very negative experiences there. Without a treatment to make it go away, the situation stays challenging.
As science journalists, what are the main challenges to reporting on Long Covid?
Gez Medinger: The first challenge is getting people to care about it, as it doesn’t show visibly. Many people suffering from Long Covid do so quietly, and they may even appear normal for brief periods when interacting with others. What those people don’t see is that managing that short interaction requires them to rest for six hours beforehand, and they might end up with a huge increase in symptoms (also known as a ‘crash’) the next day as a result. That’s the issue: when you see someone, you might think, ‘Oh, they seem fine,’ but you can’t tell from their face. Maybe they look tired or have bags under their eyes, but everyone is tired these days. There is no obvious sign. Some have skin problems, but there’s no visual indicator of something being wrong. Unlike a broken limb, which is visible, this condition is invisible. And it’s not just invisible, because cancer is also invisible in its own way; you can’t see it, but it’s hard to understand what is happening physically. It doesn’t make sense to people. So, combined with its invisibility, many just think it doesn’t exist. So, convincing people to care is, to me, the biggest problem.
What is your experience with Long Covid as a person and a communication professional?
Gez Medinger: I guess the relationship is quite intertwined. I have worked in film and video production before, with extensive experience in communication, but not necessarily in science or health. It was mainly branding communications and storytelling. However, when I developed Long Covid, I found myself in a situation where I had to adapt very quickly. Early on, I realised that in an environment where there were no answers, I had the ability to find answers rapidly because the work I was doing meant that people trusted me and responded to me. This allowed me to distribute surveys and collect data very quickly; within two days, I could ask a bunch of questions that mattered to me. I could then analyse that data and find insights, a year before published research confirmed the same findings.
Because there were no answers, I wanted to discover them. This drove me further into the advocacy work I was engaged in. The condition was responsible for my efforts in advocacy and communication, and it also helped me gain some control in a world where you have no control over what’s happening to your body. I was trying to reclaim some semblance of control. My fight against the condition was reflected in my communication work; it was almost my way of battling the illness myself. Of course, it was very challenging because I was unwell. There were times when I just wanted to make a video or do some research, a job that might only be achievable on one day each week when I felt well enough to film. The other six days, I just wasn’t well enough to work. So, it was a two-way struggle: the illness fighting me on one side, and my work fighting on the other.
Many people associate Long Covid with “invisible illness.” How does that invisibility shape patients’ interactions with doctors, employers, or even family?
Gez Medinger: It affects everything with everyone because, unless people have experienced a complex chronic illness, they have no frame of reference to understand it. One metaphor I’ve used before is, I don’t know if you’ve ever heard people say they’ve been to Burning Man, the festival in America. They come back and say, ‘If you haven’t been, you can’t understand it.’ There’s no way to describe it, and Long Covid is somewhat like the negative version of Burning Man. It’s very difficult for people to grasp how debilitating and destabilising the condition is unless they’ve experienced it.
When your faculties, which you’ve taken for granted your whole life, are suddenly removed or become untrustworthy because you might be able to do something one minute and not the next. The nebulous, fluctuating nature of the condition is also really hard for others to comprehend because they see you doing something one day and then you can’t do it the next day. Well, why not? You did it yesterday. They don’t understand that the condition means some days you can do things, and the next day you can’t; even from one minute to the next, you might be able to do something one minute and then, poof, five minutes later, you’re unwell.
So, you can’t rely on yourself to do anything, and when you can’t rely on yourself, others can’t rely on you either. This makes family relationships difficult, spousal relationships tough, and being a parent incredibly hard because you’re no longer the stable one who can handle all the problems. So, it affects every single relationship. The invisibility of it and the degree to which it’s poorly understood are the major reasons for this.
It’s very difficult, and it heavily depends on your employer’s understanding of the situation, how flexible your work is, and the nature and demands of your job. Also, it depends on where you fall on that spectrum of severity of the symptoms. If you’re near the bottom, which isn’t too bad, you might be able to make some adjustments and manage okay. However, for everyone else, it’s a major problem. So, it poses a challenge at all levels, for the government, the workplaces and the economy.
Do you feel European and national governments are listening enough to patients in shaping research agendas and treatment guidelines?
Gez Medinger: What they’re doing right now is just a drop in the ocean. It’s a tiny effort from small departments that are poorly coordinated. Currently, they are making token efforts to tackle a huge problem. If 3 to 6% of the workforce is out of action or impaired, that’s something that should be addressed quickly. Yet, for political reasons, it gets sidelined. This is a significant issue. Even if you remove the human element and think of it from an GDP perspective, I would still see where productivity is lacking and think, ‘This needs urgent attention.’ Resources should be directed there to fix it fast. But that’s not happening. Even if you’re very cynical, neglecting the human suffering involved, there’s little logical reason for them not to do more, except for political motives.
Education is also essential. When I say education, I mean showing people that this is real, that it is a significant problem and that we need to take action as it benefits us all to do so. I had dinner recently with someone, a friend of a friend, and I mentioned I’ve been struggling with Long Covid. This person was, you know, 30 or 35 years old, and I told him that I have Long Covid. They responded, ‘That’s a real thing, is it?’ This from someone who’s an educated professional, you know. It shows that many still don’t believe it’s an issue, and they don’t believe it because it’s not being discussed enough.
You’ve built an online community of people sharing symptoms and coping strategies. Do you think patients themselves are filling a gap that institutions have left open?
Gez Medinger: Patients are hugely affected because the condition is so severe and debilitating that waiting for answers and for the medical establishment to catch up and offer treatments will take five or even ten more years. It has already been five years, and we’re still a decade away. As a result, people try different approaches.
Patient groups were, and remain, a highly influential force, particularly early on. Initially, this condition didn’t have a name, but as the groups started to use the term “Long Covid”, it eventually stuck. So yes, patients are filling gaps, but it’s not always a good thing that they have to, as some of them end up trying quite risky treatments. This is another reason why institutions, governments, and health bodies should see the urgency here, as the responsibility to address the gaps in Long Covid care is theirs.
So yes, patients are filling gaps, but it’s not always a good thing that they have to, as there aren’t always universally positive outcomes. There has been a lot of wisdom and experience gained from these efforts, with many positive outcomes that have helped advance treatments and build momentum within the community. People learn from each other’s experiences, discovering what has helped others, and so are increasingly informed. While this progress is encouraging, we shouldn’t rely on patients to fill this void indefinitely. This is another reason why institutions, governments, and health bodies should see the urgency here, as the responsibility to address the gaps in Long Covid care is theirs.
How can patients be better involved in research and policy decisions about Long Covid?
Gez Medinger: So, patients are involved. I’ve been involved as a patient advocate in research projects in the UK, and patients are invited to participate. However, the process is so long, bureaucratic, and painful, it takes a huge amount of energy, and by the time it has gone through all the processes, it’s often hard to see how much helpful impact the patients made, because the other forces are too great. There are roots already in place, but I think we need a larger discussion about how we can streamline the process and target the research to be designed around the aspects that will make the biggest difference to patients most quickly.
Why is the STOA workshop on Long Covid relevant and timely? What themes will you cover?
Gez Medinger: I’m part of the panel and, fundamentally, I want to focus on the how and the why. Today, I believe we should discuss why Long Covid is such a significant issue, not only for healthcare but also for the economy. Another key fact is that people are still developing new cases of Long Covid. You might have had Covid three or four times and been fine, but on the fifth time, you get Long Covid. It’s like Russian roulette; each time you catch Covid, you spin the gun, and you don’t know when the one with the bullet will come up. Many people aren’t aware of this. There’s a very laissez-faire attitude toward Covid, and decision-makers seem unaware that this is a new problem, constantly adding new individuals into its fold. It needs to be discussed, recognised, and understood.
Additionally, I want to discuss how the effects of one person’s Long Covid spread outwards, impacting their workplace, where they might be unable to work, as well as their family, children, and support networks. The impact isn’t confined; it’s much greater than any individual. In the UK alone, 2 million people are affected, many more than most realise. Essentially, as responsible citizens who want to tackle this issue, we can and should do better. Events like this are crucial in showing that it’s in everyone’s interest, including governments’, to recognise the problem, take it seriously, and allocate appropriate funding.