Trying to treat long COVID

While research into mechanisms and causes of long COVID continue, how can we help the thousands of people already affected? Mark Toshner is a respiratory doctor at the Royal Papworth Hospital in Cambridge who spoke with Chris Smith...

Mark - Yeah. So it's a really difficult area right now, and I have a long COVID, or a post COVID clinic, in Papworth. And if I'm very honest, I don't have an awful lot to offer patients right now. And it's partly related to some of the things Akiko and Danny have spoken about. There's a lot of very exciting science going on, but it's going on, it's active right now, and it hasn't drawn its conclusions. So that's really hard to then feed into clinical trials to kind of figure out which therapies might work

Chris - Well, you mentioned clinical trials - surely that is the linchpin, isn't it? It's trying to dissect away who's got what, when, why, and which of their syndromes is caused by what mechanism. Because we seem to have so many different balls in the air. Part of the problem is that we're being completely overwhelmed with information, and dissecting out what is going on for each person seems to be difficult.

Mark - It's really challenging, and it's an evolving space, and some of this can actually be dealt with by the type of trials you set up. So for example, it's not very dissimilar to the situation when we first encountered COVID and the best response to that was a trial called the Recovery trial, where they were completely - and I thinkDanny used the word agnostic and I'm going to follow that theme - agnostic to what's causing it, what the major players might be, and just have very big trials that are able to put lots of different therapies in depending on how the evidence changes. So I think there are some things we can do about that, but it requires a lot of funding and it requires most patients, or a lot of patients to be enrolled in clinical trials to clarify what therapies work.

Chris - Are you tending to approach this then as a doctor who's saying, what symptoms have you got, and what can I detect that I might be able to fix? So rather than saying, you're labeled as long COVID and I'm going to treat you as long COVID, I'm going to treat you symptomatically and try and improve your function?

Mark - At the moment, that's very much the case. So largely we are restricted to looking for the things we know about and excluding coexisting or complicating diseases that have established therapies. But for most of the patients who have residual symptoms in my clinics, I don't have anything evidence-based to offer them at the moment. What we really need now is a really huge effort in the clinical trial space to try to feed in some of the mechanistic work, some of the work being done on what might be causing the different parts of post COVID or long COVID syndromes into clinical trials, to get some actual answers and to make meaningful differences to patients.

Chris - But what we heard from our previous three contributors was very much that this is not just one syndrome. It appears to be lots of things going on and different people are affected differently. So does that mean then that just going to see one doctor who's very good at doing one type of medicine might not necessarily be the answer, do we need broader clinics with a wider range of expertise in them to try to fix people up?

Mark - Yes, we almost certainly do. So this is not going to be solved by one doctor, it's going to be teams of both clinicians and healthcare workers, and that's what the very best services that are in evolution right now are looking to do, they're looking to draw on expertise from a wide variety of different areas. But again, we may find in another six months that we need to change the composition of those teams, because at the moment we still don't have absolute clarity over the proportions of patients we're going to see with different problems. So it very much is a space that needs to be dynamic.

Chris - Well, one factor that seems important for many people is time, time to get better. We heard at the beginning of the program from Freya Jephcott, who told us about her run in with COVID earlier on.

Freya - I used to have big problems with brain fog and this insane fatigue that would just make it hard to lift my limbs. And I was getting ridiculously high fevers up until a few months ago, and quite bad rib and joint pain, and deafened by tinnitus and smelling garbage everywhere. It was really horrible. But actually at this point, everything's bearable, and I think if it stays at this level, then I'll be able to sort of, to some degree, get on with my life, be able to do my desk job and hang out with my partners and see friends. But I think it's going to be a while before I could, say, go to the shops and carry bags, and I'm not sure if I'll be able to drive again.

Chris - So presumably you're just being confronted by people with that sort of story in these clinics, Mark.

Mark - Yes, but I think there's also a positive part to that story which is, she is getting better. It's slow and it's painful, it's frustrating, and often it comes and goes, and that is very much what we're hearing. But as a respiratory doctor, this isn't new for us. So when I see patients after pneumonias who've been admitted to hospital, quite often at three to six months, they are not back to normal. They're nowhere near back to normal. So the underlying idea of convalescent trajectories varying is well established. It's just that in COVID we seem to have a really big burden and a huge amount of patients who've suffered from it, as well as a kind of very dizzying variety of potential new complications that we're having to unpick. So I think there is a positive message here which a lot of the patients I see are getting better, and some of them are back to normal, but there's a big rump, there's a big proportion of patients out there who still have a lot of symptoms and we're really going to need to put a big effort into the research space to try to clarify why, and then to figure out if there's anything we can do to improve things for them.

Chris - Do you have optimism, really? Are you feeling that, in fact, we are funding this properly, we're addressing this properly and it's actually going to be alright, or are you nervous that in fact we're storing up trouble for tomorrow?

Mark - So I'm nervous because there are so many patients out there, and I think funding structures are slow. There definitely needs to be more money pumped into this. I'm optimistic because everything in the pandemic has been turbocharged and research has really proven it's worth time and time again. And this is another scenario or another situation where research can give us the answers. It's going to be slightly more challenging because it is a complex set of different diseases and it's chronic, so it's going to take us a while to get answers because by definition, we're going to have to prove that treatments stick months down the line, not days or weeks.

Chris - I think probably one question going through people's minds who are listening to what you're saying is going to be well, I've got long COVID. What advice can you offer me for both the short term and the longer term?

Mark - So my biased take on this is that you need to be pushing your centres to be enrolling in and taking part in clinical trials, because without clinical trials, we won't get answers to this. There are going to be a lot of snake oil salesmen, and already there are, colonising the space. So just be really wary of anybody who tells you they know the answer. If they are pretty convinced and pretty convincing, they are probably not right, because there are no really good, well-evidenced treatments yet. And there are things that might work, but this space is going to be, you know, just watch as people left, right, and centre tell you that therapies X, Y, and Z are absolutely going to cure your symptoms. I think time is going to be an important thing here, and if I was a patient, the major thing I would be doing is I'd be banging the door donors to see that clinical trials are actually set up and that you get a chance to contribute to them.