Long Covid researchers at Nottingham’s hospitals last night held a free live ‘Ask the Expert’ online Q & A event for people to learn more about the condition and how they can help those suffering from it.
The online event was hosted by Nottingham Hospitals Charity. Our Long Covid Research Appeal is aiming to raise £50,000 for vital research into treatment of the condition.
Members of the public, people suffering with persisting symptoms post-Covid and other members of the local community signed up to the free event, to learn more about the effects of Long Covid, possible treatments, and the local research being led by teams in Nottingham.
Expert panellists included Professor Ian Hall and Professor Charlotte Bolton from the NIHR Nottingham Biomedical Research Centre, who are both heavily involved in Long Covid clinical care and research.
They were joined by Nottingham Hospitals Charity Chief Executive, Barbara Cathcart, and Ian Pointer, a supporter of the Charity who is suffering from Long Covid symptoms more than a year after being hospitalised with Covid-19.
Here are some of the questions our experts answered during the live online event…
What is the process for diagnosing Long Covid?
Prof Charlotte Bolton: We don’t fully know what Long Covid is and I think we need to be careful that we don’t clump everything together and say if you’ve symptoms that are persisting, it must be Long Covid. There is an accepted definition that if symptoms persist after 12 weeks or longer it may well be Long Covid, and there are symptoms that are more classical that persist, particularly if they are alongside each other – fatigue, muscle aches and pains, joint aches and pains, ‘brain fog’, memory problems, concentration – they may well be part of this syndrome. Some patients are making a slow recovery, some patients have this persisting Long Covid state, in other patients actually some of their symptoms are because they’ve had an underlying condition beforehand, like asthma or heart trouble, and actually it’s that that’s been slightly offset and we need to support the patient through it. So one of the key things I consider is, how is the patient and what’s their recovery journey? Are things gradually getting better? And we have to in many ways take each patient one by one and look at what the complexity of the symptoms is, how does it fit with what we know, importantly listen to the patient, and actually I’m learning an awful lot from the patients I speak to, and bearing in mind there’s an awful lots we don’t know. There isn’t a list of ‘one, two, three, four’ symptoms equals Long Covid.
Can having the Covid-19 vaccine help diminish the impact of Long Covid symptoms?
Professor Ian Hall: I first became aware of this because I was contacted by one or two of my patients who had symptoms suggesting they had Long Covid, who had been vaccinated and their symptoms had improved quite markedly. We are starting to see data from studies now. In general the evidence suggests you’re likely to be better rather than worse if you have Long Covid and you have the vaccine, in terms of the Long Covid symptoms. The question is, why is that happening? One of the things you see in Long Covid is evidence of low-grade inflammation, and so it’s possible to my mind that by receiving the vaccination, which produces an inflammatory response in itself, you may to some extent recalibrate the immune system in some people, and that recalibration could improve low-grade symptoms of inflammation.
How long have you found that Long Covid has lasted for, with your patients in your clinic?
Professor Charlotte Bolton: We flag if symptoms persist longer than 6 weeks, we classify as Long Covid or ‘of note’ if it lasts more than 12 weeks – that’s not dismissing anyone that has it less, for the vast majority of patients their symptoms are settling or settled by 8 to 12 weeks, and I don’t want to start off anywhere but that point, because otherwise it’s not giving a clear picture for the vast majority. For those patients where symptoms persist longer, it can be concerning – it can be worrying and they need some answers. We’ve only got 14 months’ history and not everyone is back to how they were. However, I’ve seen an awful lot of patients who have symptoms for three, four, five or six months, but give them another couple of months and their symptoms are far more improved. It is a gradual improvement over time. I think I started saying last May it could last a year, but I think we’re having to stretch that a little more now, as we learn more. But generally, symptoms improve over time and we know from previous coronaviruses ten years or so ago that it can take considerable time, but people DO improve over time.
Ian, you’ve experienced Covid-19 and Long Covid yourself. What helped you when you were experiencing Long Covid? How did your friends and family help?
Ian Pointer: It’s literally just being there to support and understand. My situation was that I had the fatigue and fitness issues, so improving my fitness levels with little walks helped me deal with that. But the anxiety and the mood swings were where, if you’re looking after someone who’s suffering from Long Covid, you have to realise ‘it’s not his fault’ – don’t blame them, they don’t realise what they’re doing. I didn’t realise what I was doing. I didn’t realise how snappy I was being. I didn’t realise how depressed and quiet I could go, so it’s just being with them and rallying round them. Just a supportive role, that’s what helped me. I just wanted to be supported. Just be with them and help them as much as you can. Do whatever puts a smile back on their face.
If a friend or family member is experiencing Long Covid, is there anything they can do in order to support the research which is going on right now in Nottingham?
Barbara Cathcart: Yes, if people would like to help support the research and help fund the research, then they can make a donation or inspire people to do sponsored events, whether it’s making crafts or holding a tea party. Just be specific that you would like to fund local Long Covid research. The doctors that receive the money are the doctors that are treating you here in Nottingham, but they are connected to a national network. There’s a lot of information on our website and teams of people who will help.
There have been a number of Long Covid research projects being talked about nationally – what makes our research in Nottingham different to other national research?
Professor Ian Hall: First of all, Nottingham has been to some extent ahead of the game I think. We recognised Long Covid to be an issue before there were any structures around services or early research, and we started setting up programmes looking at describing what the problem was and, most importantly, looking at what interventions might be effective in helping to care for the patients. There’s quite a mixture in terms of the symptoms and the physical evidence of the disease that people are suffering from, so clearly one is going to need a multi-disciplinary approach. So that’s not just a doctor giving you a tablet, you need to have a range of different treatments – if you’ve got psychological problems you may need support with those, if your problems are more to do with mobility and phased exercise, you may need a different sort of approach. So we were very keen to set up what’s an individualised, or personalised, approach, where the solutions were designed to be fitted to the individual patient. Some of the national studies are quite different, they are more long-term where you’re getting large numbers of patients and taking averages, so they’ve got a slightly different focus to what we’re doing locally. One of the things Nottingham is particularly known for is its imaging research, as many of you will know, Sir Peter Mansfield got the Nobel prize for his work on magnetic resonance imaging while he was based in Nottingham, and we still have fantastic imaging facilities here. So a lot of the projects we’re doing locally involve imaging, because that’s one area where we’ve got the international expertise.
Professor Charlotte Bolton: A lot of the large national studies have reported that a lot of patients have persisting muscle ache or fatigue, but really what we’re focusing on in Nottingham is the ‘why’ and the ‘how’ – why are people suffering with persisting fatigue, what’s causing that, and utilising some real key mechanistic work to answer that question so that we can then, far more importantly, work out how to treat it. We do take an approach of treating the patient in front of us – the person in front of us – and we want to do everything we can to get that person recovered fully, and as quickly as possible. I believe very firmly that across the group of clinical doctors, nurses, physiotherapists, psychologists, we’re doing everything that we know
we can – but there’s a lot we don’t know. And actually the time is now – we can’t wait a year for a big grant body to give us a grant, we actually have people coming to the clinic in their droves at the moment with persisting symptoms, and we’re doing what we can, but there’s an awful lots we don’t know. And that’s what’s driven us to try and answer the ‘why’ question – why are these symptoms persisting, and what can we do about it?