The debilitating effects of Long COVID

While the robust evidence that infection with COVID can lead to a significant reduction in cognitive ability, it’s still just a small part of the overall picture when it comes to what we’ve come to term ‘Long COVID.’ Nathalie MacDermott is a paediatric infectious diseases doctor from King’s College London; for her, the aftermath of what was, at the time, quite a mild case of COVID has been significant, disabling and quite different from some of the other things we’ve heard about so far…

Nathalie - I was working on the front line during the pandemic. I started at Great Ormond Street in March of 2020 and I contracted Covid probably by the end of March of 2020. Fully recovered from that, went back to work and then at the end of May, 2020, I seemed to get an almost identical illness again. And following on from that illness, I developed nerve pain in my feet and then that seemed to progress to other neurological symptoms and problems walking.

Chris - I knew you straight away because I was watching you on the television at the start of the pandemic. You were a fit, healthy, young woman by the look of it. Is that true?

Nathalie - Yes, that's true. In fact, I think not even two years before I just returned from a massive field work study in Sierra Leone. I used to walk four miles a day. I would run regularly

Chris - And we've just walked into this office together. And you are using crutches and it's four years since you contracted Covid, do you think?

Nathalie - Yes. So I've been using the crutches for probably about a little over three and a half years now. And I wouldn't say that my symptoms have really improved during that time. I think my ability to manage them and deal with them has improved. But the symptoms themselves are pretty much the same.

Chris - You say you get some nerve pain and some other neurological symptoms. So tell us what your life is like now. What's actually happening to you?

Nathalie - I find it difficult to walk. Lifting my feet off the ground is what's the biggest challenge. So at least with the crutches I can kind of use my arms to propel my legs a bit more. But I need crutches to go, you know, a few hundred metres and anything beyond that. I generally use a mobility scooter to get around, but it also affects my bladder and my bowel and leaves me with constant pain in my legs and my feet.

Chris - Is it getting worse, getting better?

Nathalie - Well, it's not clear at the moment. It's not getting better, that I can tell. And I had some investigations recently, which suggests maybe there's been a slight worsening, but I'm not sure yet.

Chris - One thing that people often say to me is that it's really hard to get support to see somebody who can listen to them, to find out about their symptoms, offer solutions to manage their problems they're having better. Is that improving or or is there still a black hole for people who find themselves in a bad state post covid?

Nathalie - I think there's some improvement in people being more understanding of the condition and trying to support people in their recovery. But the problem is I think we don't have any solutions. So while there might be people to see in a clinic environment, so healthcare workers that might assess you, I think there's still long waits for that. But there are people who will assess you and have a bit better understanding of the symptoms. We don't have any answers as to how to manage that other than take things easy and pacing and so on. And obviously that does work for some people. Some people have fully recovered, but we tend to see that in people who got covid later on and they tend to show signs of recovery within the first year and more or less a complete recovery within the first 12 to 18 months. For those of us who had covid at the very beginning and have not really shown any signs of recovery three and a half years in, we just don't know what the outcome is for that. Because if you haven't improved in three and a half years, is something magically going to change overnight that your body just suddenly says, oh, now I'll recover. I think we want to believe that, but I can understand the desperation for various treatments and people trying different things even though there's no good evidence to suggest they work.