Long covid: Barbara's experience
Phil Sansom heard from another long COVID patient, Barbara Melville. Her account is similar to Paul's from earlier in the programme, but with some interesting differences...
Barbara - It's been a rollercoaster. I've had symptoms since the middle of March. It started with a mild cough and congestion, nothing too concerning. Fast forward a couple of weeks later and I can't breathe properly; at one point I was unable to walk. I called 1 and they put my symptoms down to anxiety. A few minutes later I collapsed, radiating with heat; and had to get an ambulance. I went to hospital at that point; was diagnosed with COVID-19, but they were unable to test me. For the next 10 weeks or so I was bed bound with breathing difficulties, low oxygen saturations, tinnitus, diarrhoea, dizziness, nausea; you name it, I had it. But the main problems, which continue to this day, are breathing difficulties. I can't actually walk more than a couple of minutes now. I used to be an avid hill walker and martial artist, and now I can't get to the end of my street
Phil - And you're talking to me now, is this an effort as well that's going to take it out of you, and maybe come back to hit you tomorrow?
Barbara - I haven't really had that kind of post-viral fatigue people talk about for a while, so I'm lucky. But I am the admin of a support group, and they are definitely seeing this pattern of what we call 'boom and bust' whereby they do something and then there's immediate effect. Personally that's not what I'm seeing, which is why I'm a little nervous about the blanket label of 'post-viral fatigue' for everybody; I think that may be the case for some people, but it hasn't been the case for me.
Phil - Have you had the antibody test?
Barbara - When I was in hospital they were unable to do it; they said they would get into trouble. And I've decided not to have an antibody test at present. My feeling is they're not robust enough. And I'm concerned that if I were to have a positive test, that it may have stigma attached to it, rather like HIV did back in the nineties.
Phil - I've heard from a few different people that some of their symptoms are weirdly brain-related?
Barbara - Yes. This is an interesting one. People talk about brain fog, and that's a collective way of describing memory loss, or that thing where you put your laundry in the toilet instead of the laundry basket; it's a lot of that sort of thing. It would be really good to get some clarity on the neurological side.
Chris Smith asked University of Cambridge immunologist Clare Bryant to weigh in...
Chris - Many of the symptoms that Barbara describes are quite acute symptoms. Do you think that she's got injury to various tissues caused by the virus directly, and she's suffering the effects of that? Or do you think she's got these subsequent immunological effects going on? Or do you think it could be both?
Clare - A combination of both, but most likely immunological, because inflammation leads to damage. Long term damage is exactly the kind of symptoms that she's... the reasons for the symptoms that she's describing.
Chris - And what about the prognosis in people who have this? Helen did say earlier that some of her patients are saying, "I'm beginning to turn the corner", but once you've got these footprints in your immune system caused by an infection like COVID, are they there for keeps? Or will this eventually put itself right?
Clare - We have to hope that it will eventually solve itself, Chris, but at the moment that's a big unknown. Helen's giving us some hope, but really we just don't know.