The Guardian science editor, Ian Sample talks to Scotland’s Astronomer Royal Catherine Heymans about her experience of Long Covid and how it impacts on her life. Ian also speaks Professor Danny Altmann, an immunologist at Imperial College London, about the current scientific understanding of the condition, and asks whether we might be any closer to an effective treatment.
Extracts
Presenter Ian Sample: Those early days of the pandemic can feel like a distant memory.
But for the 2 million people in the UK who experienced self-reported long COVID symptoms. COVID-19 is still very present. And for many, it remains devastating.
Presenter Ian Sample: Three years on, we still don't know what causes it or how to treat it.
Professor Danny Altmann: How could we possibly minimize or trivialize the effects of having been a previously able-bodied fully functional, busy professional person. Who's had all of that blown out the water. Of course, that's somebody who needs and deserves professional help.
Presenter Ian Sample: So, what do we know about Long Covid now? And in the absence of treatments, how are patients managing their condition? I'm the guardian science editor Ian Sample and this is science weekly.
Catherine Heymans: Just to give you a sense of where I'm at. I rested for a good hour or so before talking to you, I'm currently lying horizontal. In my bed with a headset on.
Presenter Ian Sample: That's professor Katherine Hamans. She's an astrophysicist, the astronomer Royal for Scotland, and she has Long Covid
Catherine Heymans: What we're talking about. And after our conversation, I'll rest for another couple of hours. And if I do all of that, Then I will be able to sound completely happy and healthy and my normal self while I'm talking to you.
Catherine Heymans: We often talk in our Long Covid communities about this sort of rollercoaster. You can never quite predict what each day is going to bring. .
Presenter Ian Sample: So, what symptoms have you been having over the past year?
Catherine Heymans The fatigue is constant with me. But after my second infection, I developed something that's called Postural Orthostatic Tachycardia Syndrome (PoTS) So, this is a really weird thing that when you stand up. Your heart rate goes crazy. I feel like I'm like Usain bolt running the sprint, and literally all I'm doing is standing up.
Um, chronic illness. Is this kind of purgatory in the middle of it, you kind of have to make your peace with it. And that's a really important part of this Long Covid journey is acceptance. It's a journey to go through to accept that your life has changed possibly permanently that's the hard bit.
It's not giving up hope. But you can't fight this illness. Um, it's weird to kind of have to go through this grieving process for your pass self. And what's your three. That it's is okay. You know, you can still enjoy the parts of life that you can do.
Presenter Ian Sample: How did you first go about trying to get treatments or support for yourself?
GP is obviously everyone's first port of call. I won't be unusual as a Long Covid patient to have met a GP. He told me to just push a little bit more, do a little bit more each day and I'd get back to my normal self. And that's the absolute worst that you can do if you've got long caveats or certainly the chronic fatigue form of long COVID and the best advice out there actually is coming from the wonderful ME community. So in Myalgic Encephalomyelitis, they've been suffering with chronic fatigue, some of them for, for decades.
And the best advice for them is something called pacing. And it's the self-discipline. Too, when you're enjoying something to say, I have to stop now, because if I carry on. I I'm going to have to spend the next three days in. Embed. So it's there. The self-discipline of pacing is, is, is really something.
And the other thing that I've discovered that's really helped me is something called hyperbaric oxygen therapy. This is where you go into a high pressure chamber and breathe oxygen. And I've been doing that for about six months now, and that really helps butts. I need to recognize my privilege here. I might be able to keep my job because I have a job I can do from bed.
Which means I have a salary, which means I can afford this. Treatments. And that's not true for the majority of Long Covid patients and it's not a cure. It's. It's like a sticking plaster.
Professor Danny Altmann: So, I'm Danny Altmann. I'm professor of immunology at Imperial college London. When the pandemic came along, we pivoted our lab to Covid research. And somewhere in the midst of that, we became very strongly aware of Long Covid and have quite a large, long COVID research program as well. Including a study called Wilco – which stands for working out the immunology of Long Covid.
Professor Danny Altmann: We do start with the assumption that there's, um, An immunology story to tell here. And people are keen or various different hypotheses. One that I think has some traction in some of the Long Covid support groups. Is that people dealt poorly with the virus during their acute attack. And either didn't respond to it adequately and have persistent virus still on board. If you like, a persistent reservoir.
Another idea perhaps is that they responded to it excessively. And to have a kind of excessive, inflammatory response on board. And the certainly some evidence in support of either of those things. There's quite good evidence in at least some people. That one of the things that might've happened to them during their acute attack is that they, um, reactivated viruses that they had in their body. So most of us were plant earth go around, for example, with Epstein Barr virus, in ourselves as a latent infection. Um, and people will know it as the thing that causes. Glandular fever. Um, so, so there's an idea out there that certainly applies to some people. That when you get your acute Covid infection, your reactivating, your Epstein Barr virus, and almost kind of giving yourself about a glandular fever.
And then the last one I want to throw into the mix is that we know that some viruses including this one, Can we really, um, mess with your immune regulation and induce new auto immunity. So, you know, attack of your body's tissues a bit like on seasons, something like arthritis or lupus.
Presenter Ian Sample: And I know there are other theories out there too, like Covid causing microclots in the blood, but are there any biomarkers that shed light on who has, which mechanism or bunch of mechanisms going on in their body?
Professor Danny Altmann: And if you put together all of those analyses, There's some common themes emerging. I've already mentioned Epstein Barr virus, reactivation. Some labs have looked at hormones and found altered levels of cortisol. Some people have looked at the gut microbiome and, you know, the bacteria that we all have on board all the time and shown clear differences there and people have Long Covid.
Presenter Ian Sample: When you look across, you know, the trials being done and the research being carried out, do you see potentially promising treatments in the pipeline?
Professor Danny Altmann: I see a lot of effort out there. There are, if you go to, the clinical trials website, the portal, there are also trials in progress, probably the largest group are the group of trials to do at the premise that at least for subset people with Long Covid and It might be because they haven't cleared the virus and have a persistent reservoir of SARS-Cov 2 board. Therefore, if we could treat them either with antivirals or with monoclonal antibodies or with vaccination.
Maybe they'd get rid of that reservoir and get better. Meanwhile, there are trials on anti-histamines, anticoagulation. I guess I do feel fairly optimistic that in the next six to 12 month there'll be some useful answers. I don't feel confident yet, that here'll be, a catchall answer that helps everyone. But I think, you know, we're on the way.
Presenter Ian Sample: When we spoke to Catherine, she mentioned how the ME/CFS community had been really helpful in her journey in learning how to manage Long Covid.
Professor Danny Altmann: One of the earliest lessons in Long Covid, was that the people who tried to power their way through the Long Covid. So cycle, run and jog their way out the other side. I actually did rather badly and if anything made themselves worse, and that you needed quite good advice and quite a careful approach to rehabilitate yourself.
Covid-19: Long Covid & ME/CFS
Energy Management & Pacing