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Video Q & A
This video was recorded on 6th March 2020 and answers some questions put to us by sarcoidosis patients about coronavirus. You can read a transcript of the video below.
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Henry: Hi it’s Henry Shelford, I’m Chairperson of SarcoidosisUK here with Dr. Robina Coker. Thank you very much for doing another video. It’s very much appreciated and I know we had over 10,000 people look at the last video so we know how important it is just from that. So Robina is here as a here as a member of the clinical board of SarcoidosisUK. She’s a consultant in respiratory medicine with a specialism in sarcoidosis at Imperial College Hammersmith Hospital and she’s clinical director of the National Institute of Health Research with a budget of around 14 million…
Robina: In the North West London, not the whole NIHR.
Henry: She’s a doctor twice over with a PhD in travelling with the lung condition, so we couldn’t have anyone better and thank you again. This is our second video. We did our first video on February the 14th. We knew Covid-19 was serious then and wanted to provide information and since then obviously a lot has happened. There are now 98,780 cases. It’s in 93 countries. There have been 3,390 deaths. We’ve had 116 confirmed cases in the UK and we’ve had the first death in the UK. There are currently just shy of 40,000 active cases worldwide, 33,000 of those are mild and over 6,000 are serious or critical. In terms of the balance of how that goes, 81% developed mild symptoms, 14% developed severe symptoms and 5% become critically ill. Robina, this is probably a good point to ask you, what is the difference between mild, serious and critically ill?
Robina: Obviously those with mild illness may be able to stay at home. It may just be like having an episode of flu, whereas those who have more serious illness will need to be admitted into hospital and those with critical illness may require intensive care.
Henry: For people at home, what’s going to be that tipping point between feeling like you need to go to hospital versus not?
Robina: I think if patients are feeling breathless, they certainly need to be back again in touch with their health care professionals, taking advice from NHS 111 and public health England.
Henry: And critically ill means you’re in intensive care?
Robina: Yeah, you’re likely to need intensive care, absolutely, and you may need support for your breathing.
Henry: The mortality rates, we’ve had questions on that and WHO updated their numbers from 2% to 3.4%. The mortality rate does vary and I think it’s very clear that it’s not understood right now. In China it’s 3.8% nationwide. It was 5.8% in Wuhan but 0.7% in other areas and that change reflects better understanding of the disease, that Wuhan was initially the first place. It could also be lower and I think you were talking about that earlier because in mild cases many might not be reported but it also could be higher because a lot of cases have not yet concluded. We know that lot a lot of cases are ongoing. The mortality is also expected to be worse in less developed health care systems versus countries with a stronger health care system and the death rate of those admitted to hospital, so those are the worst cases, is currently thought to be around 15% and the average days from first symptoms to death at the moment is 14. We know that underlying conditions and age are important. Claire you asked a question about what the likelihood of fatality is, which we’ve just talked about. Antony wrote a question saying “Having sarcoidosis and being age 71, I understand I’m more at risk. What’s the likelihood for people like me?” So we know that the numbers we have currently and again, very very important to stress that these numbers don’t have full clarity at the moment but at 80+ years it’s between 14.8% and 21.9%. 70-79 is 8%. 60-69, 3.6%. Then it’s 1.3% for over 50 Below that, 0.4% for 40-49. 30-39, 0.2%. 20-29, 0.2%. 10-19, 0.2%. There have been no fatalities from 0-9 years. Which, talking to someone with a 1 and a 2 year old, I have to say that number is good to see. Mortality rate for men is 4.7%. Females, 2.8%. Do we know any idea why that might be?
Henry: No, we just know that that is. I thought it would be useful to compare it to other diseases. So SARS had a mortality rate of 9.6%. Seasonal flu is less than 0.1%. Robina, some people say it’s just like the flu. What’s your reaction to that?
Robina: I think it’s very likely that most people will have an episode of nasty flu, and have to stay at home and look after themselves in the way they would normally do if they had seasonal flu.
Henry: So that’s if you have Covid-19 it’ll be like flu.
Robina: The difference of course is that we don’t have immunity to it. We haven’t seen it before and we’re not vaccinated so I think that’s the concern. It’s the unknown.
Henry: One of the things is a lot of people think a cold is flu and so their idea of what flu is, is quite distorted whereas flu…
Robina: Yes I mean I think you know if you do get flu, you generally have a fever, your muscles ache, you feel tired, you feel weak and you generally end up having to stay in bed and drink lots of fluids, and maybe take paracetamol to get your temperature down. You may well feel rough for a few days.
Henry: Rough and bed-bound. I’ve always heard the sort of colloquial definition is the difference in a cold and a flu is if there’s 20 quid on the ground when you’ve got flu you just can’t be bothered to pick it up.
Robina: I haven’t heard that one.
Henry: You know, I feel too ill for that. Part of answering that question is because there’s some people with an ambivalence to it and saying it’s just like the flu and we know that it’s not and we know obviously that the flu actually can be dangerous for many. We’ve had 70 questions from social media, either through Facebook or Twitter or email directly. We’ve collated them as best we can. We will be answering going to some more questions that are being posted now so if you’ve got any questions do post them. Hopefully we’ll answer. We may alter them as we go through. Let’s talk first of all about precautions. So Sarah, Ann and John all ask what should they do in in addition to hand-washing? I think that hand-washing message has got through well and it’s probably good to cover what hand-washing actually means. Because t’s not just like my two-year-old who just…
Robina: No, it isn’t. So Public Health England and NHS have very clear instructions on hand-washing. You need to use water first, then soap. You need to wash your hands very thoroughly for at least 20 seconds and that means all areas including your fingernails. Then you need to dry your hands and dispose safely the tissue or use an air dryer. So hand-washing is key at the usual times, before you eat, after using the restroom, after coming off public transport. All the things you would normally do, but just pay particular attention to it. So that’s very important. As part of that you shouldn’t be touching your face with hands that you haven’t just washed. So we talked about this last time, it’s very important to try not to touch your face and that’s your hands are clean.
Henry: And particularly its mouth nose eyes.
Robina: Yes, yes. And then the second aspect is trying to avoid close contact with people who are ill. Now this is obviously not necessarily possible if it’s someone in your household but if you can, when
you’re out and about, avoid close contact with anyone who’s unwell, that’s sensible. The final thing is, if you are ill yourself or if you have a cold, a head cold, and you sneeze or you cough, you should sneeze or cough into a tissue and then dispose of that tissue safely or if you haven’t got a tissue available should sneeze or cough into your sleeve so that you’re not a coughing or sneezing over other people.
Henry: Yeah, or onto your hands which you’re then going to use and infect other surfaces. You talked particularly about toilets.
Robina: Yes, I mean it’s likely that this virus, like others, will be shed in urine and faeces so it’s obviously really important, so think about hygiene in the toilet.
Henry: You touched upon household contact so for instance, if I have the symptoms and I’ve got a young family at home what do you think I should do?
Robina: I think it’s very difficult I mean as I said before we can’t give individual advice. Generally if you’re the carer…
Henry: I was trying to use that as an example for everyone who’s going home to their family that they obviously love and adore.
Robina: Yes, if you’re the carer and you probably don’t have much choice and it’s likely that it’s going to spread between household contacts.
Henry: I think as we were talking before, the likelihood is we’ve got an incubation period so everyone is going to need to go into isolation as a family unit. By the time you’re coughing and you’ve been at home, they already are in a high-risk situation so going back to them this is not going to change things that have happened already.
Robina: No, that’s right.
Henry: Just to reiterate the precautions I think is really important. so it’s hand-washing, social-distancing, being careful when you cough, or sneeze you go into tissue or into your sleeve. And also take particularly care around public toilets.
Robina: Yes, and try not to touch your face.
Henry: Ibrahim, Rachel and Phil asked about the virus staying on surfaces. So being transferred from touching a hard surface versus a fabric.
Robina: Well I mean there is persistence of virus particles on surfaces. We don’t have the details on different surfaces. It looks as though it’s probably persists less time on hard surfaces than on soft surfaces, such as fabrics. So if you can wash fabrics that’s great, but just be aware yes it could be transferred from handrails on the underground for instance or on the passenger trains and it’s likely to remain there several hours or longer.
Henry: Right, and that comes to the point of not touching your not touching your face so you don’t conduct from your hand to you.
Robina: So by all means touch a handrail, you may well need to but wash your hands afterwards before you touch anything else.
Henry: Kenny and Andy asked should they wear a mask?
Robina: Well the advice in this country is not to wear a mask. There’s no evidence that it’s effective in people who are healthy. Very tight-fitting masks are, you know, difficult to wear for any length of time and if you’re already feeling a bit breathless they can be quite uncomfortable. The only possible benefit is they might stop you touching your face. But people tend to remove them anyway a lot of the time. So how really effective they are? There’s no advice that we should wear masks and there’s no good evidence that they are effective.
Henry: Yes and with people with a lung condition, for many it’s not an option. The next question is on the symptoms. Ken and we were asked by someone who wanted to not have their name. How can you tell if you have the virus, if many of the symptoms are similar to sarcoidosis. So if you’re already coughing.
Robina: Yes, we touched on this last time didn’t we? So typically it seems to be a dry cough and a fever.
Henry: And so sarcoidosis would tend not to have a fever.
Robina: Generally you don’t have a fever there are some people who flare with a fever, but in my experience it’s a minority. So I think the fever is a clue. And then if you do develop worsening breathlessness that should also be a clue.
Henry: Right. If you catch the virus how long are you infectious to others for?
Robina: Well the quarantine period of course is 14 days and I would imagine it certainly wouldn’t be longer than that.
Henry: I think that’s the official advice, 14 days. We were also asked how can friends, family and carers spot the signs, that’s for them so if they see your temperature rising.
Robina: Dry cough. fever, yes.
Henry: Sarah asked and it’s an important question what do I do if I become symptomatic? if I recognize the symptoms in myself?
Robina: I think you call NHS 111 or you go to their website and you get the local help for yourself.
Henry: We went earlier to go and see the Covid-19 pod here to see how that process works. There’s a lot of very clear signage saying “Go this way” Because we’ve had incidents where people haven’t known where to go and they then stop you outside the door, ask you to call the number so that they can then prepare to receive you. And then I think the process takes over. So that’s the process here there’s signage, there’s a place to go and a number to call. We’ve had a lot of sarcoidosis specific questions and that’s clearly a big part of why we’re here and doing this. Jennifer asked are people with sarcoidosis more at risk of catching Covid-19.
Robina: I don’t think you have, if you’re generally healthy, you have an increased risk. If you are on immunosuppressive medication then you may have an increased risk of catching infection but we don’t have any data specifically on sarcoidosis and coronavirus.
Henry: And Lubina asked do people with pulmonary sarcoidosis need to take particular precautions.
Robina: It’s difficult to know – it’s a very good question but it’s difficult to know what extra precautions they could take. The thing I would say is it’s really important that your condition is managed as well as it can be so you take good care of yourself, you take your medications, take all the medical advice that you have and advice from your health care professionals, your nursing team and so on, and take as good care of yourself as you can generally. I don’t think there are any specific things apart from that we can recommend.
Henry: Richard asked about if immunosuppressants are more at risk – I think we’ve covered that. I think a good question, another good question, from James was if you have sarcoidosis are you more likely to be severely affected?
Robina: I don’t think we know and I think it’s going to depend. Sarcoidosis is such a broad condition and people are affected in many different ways and some people have quite mild disease and some people have more complex or more severe disease and I think that’s got to be factored in. So if you have severe lung disease you may be at risk of a more severe illness but we don’t have data on that.
Henry: And Sheila asked the same question but her sarcoidosis is in remission. I think it’s the same answer, we don’t have data, it could mean more risk.
Robina: Possibly although I would hope that if you’re in remission you’re in better shape.
Henry: Yeah although I think you may still have damage.
Henry: On a more positive, we had a question is there anything people with sarcoidosis can do to strengthen their immune system?
Robina: No, not evidence-based.
Henry: Obviously eating sensibly and looking after yourself.
Robina: Yes, all those things. Getting enough sleep getting some exercise, fresh air. All those things.
Henry: Fruit and vegetables. The advice that everyone has had and follow to more or lesser degree. Richard asked if he gets coronavirus will his lung function be further reduced with the damage of the coughing?
Robina: It’s very difficult to know isn’t it. It’s possible it might be temporary and then there may be a good recovery just as there would be from flu. I mean I often find if patients do come to the department with a head cold their lung function isn’t quite so good and then it picks up again a few weeks later and I just don’t think we know exactly what the outcome or the course.
Henry: Have you seen people with flu and sarcoidoisis – do you notice that having a long term impact?
Robina: Most of my patients with flu don’t come to clinic but certainly upper respiratory viral illnesses: head cold, sore throat, coughs and colds, they do reflect, that is reflected in a decline in lung function and that picks up and recovers okay. So it’s not permanent generally in those circumstances.
Henry: On to treatment. So we were asked if someone does catch the disease is there anything they can do to make it easier for them to fight it? I think you’ve covered drinking water, taking paracetamol to reduce temperature. Yes all those things. Anything else on the list?
Robina: Gargling for sore throats. It’s symptomatic measures as one would do normally for flu. And we had some specific questions. Jacqui asked there’s been research to suggest people on TNF inhibitors might be better off because the antioxidants will become effective in stopping the immune response. Do you know anything about this?
Robina: Yes, well it’s a very good question and there was some interest in TNF inhibitors during the SARS outbreak a number of years ago and there was a suggestion TNF inhibitors might be useful but I’m not aware of any clinical trials at the moment and I’m not aware of any specific data.
Henry: For people watching, what is a TNF inhibitor?
Robina: It’s a form of medication that inhibits TNF release. TNF is one of the inflammatory cytokines that is implicated in sarcoidosis but can also be implicated in a number of other inflammatory conditions and responses.
Henry: Suzanna asked if chloroquine or hydrochloroquine will have an effect on the virus and Antony asked about antibiotics.
Robina: So the chloroquine / hydroxychloroquine question is interesting. There is an ongoing clinical trial which started last month to look at this but we don’t have data from that yet. Antibiotics will be used by health care professionals for people who they think have evidence of pneumonia so they may be used empirically but they’re not going to be effective per se against the virus they will only be effective against bacterial pneumonia.
Henry: We have questions on risks, on avoiding places. Sharon asked if she should ask her husband not to go out for her protection. Robert asked should he avoid the gym, Anjo asked about transport and Joe about clinical waiting rooms.
Robina: So as we said last time there’s no specific national advise on that at the moment although that may change and I think it’s a matter of individual choice ecause I think it depends on individual circumstances. So you may choose to limit where you go, how much you travel and who you associate with but I think it has to be an individual choice based on your level of comfort with the risks that you’re taking and your knowledge of your own condition and that’s going to vary for everybody.
Henry: Yeah, with a new disease I mean one of the things that’s so difficult is that it isn’t really understood there isn’t clear advice. It would be lovely to be at this point and go here’s exactly what you should do but people don’t know and listening to the government advice on that is it’s the thing to do because they have much more information. Are you still taking public transport?
Robina: I am yes, and washing my hands very assiduously afterwards.
Henry: And what about people that try now to avoid rush hours so there are less people around. Are you doing that as well?
Robina: I often avoid rush hour anyway because I often come in quite early leave quite late but if I had to travel in rush hour I’d travel in rush hour. I think it’s likely a lot of us are going to get it. We just have to ride that when it happens.
Henry: People have asked about travel and there’s a personal question for you because you’re looking to travel next next week so Alison and Anna asked should they fly. James asked about specific locations, Thailand and Morocco specifically. On the locations I think Chris Whitty the chief medical officer said when talking to Parliament said advice on travel was that you might want to consider if you want to go to places with less develop health care.
Robina: Yes, I think that’s sensible but again it’s a case-by-case individual decision. I mean there are obviously a list of countries for which all but essential travel has been advised against but aside from that it’s going to have to be an individual decision. We talked about this last time because you may or may not get insurance cover if you want to cancel a trip.
Henry: I think either way you should get travel insurance.
Robina: Oh, you should certainly get travel insurance.
Henry: For two reasons, one so you’ve got health care and two, if the FCO do say they no longer recommend, they’d get a refund from your insurance.
Robina: I was really talking about pre-booked trips because you may, not all insurance companies offer refunds even if the FCA advises against all but essential travel. It’s not universal so you might want to check before you take out travel insurance which we always do recommend you might want to check the small print on the policy.
Henry: Yeah, that covid-19’s covered.
Robina: Well it will probably be under infectious outbreaks but not all insurers cover that.
Henry: Okay, good tip. People asked about risks at work and Paul and Rachel said as frontline health… oh on travel you are… you’ve got a trip planned next week and you’re going?
Robina: I’m going, yes. I think that’s very important to know you personally have thought about it. I have thought about it, I have consulted colleagues and I have colleagues who are traveling overseas. We’re carrying on.
Henry: And so Paul and Rachel said as frontline health care professionals they’re concerned about their protection against the public and what should they do?
Robina: As frontline health care professions…
Henry: Which you are as well.
Robina: It’s very difficult. You have to take all the same precautions and there’s no guidance at the moment for healthcare professionals with particular conditions so again I think that has to be an individual discussion with a line manager or team possibly your occupational health department if you have concerns.
Henry: I’m grabbing the questions from over here. So we have had specific questions about people’s personal work situation I think that to follow the government advice.
Henry: That’s not something we can cover and I think by covering healthcare and saying it’s carry on that covers everything. That is the frontline of this disease. I think we’ve covered, it looks like we’ve covered any questions sent in so I can’t, I haven’t seen, anyone posted so I think that means we’ve covered the things people have asked. Is there anything more you want to say on covid-19 and sarcoidosis.
Robina: No I don’t think so. I mean I think the only thing to say is that most people will recover from this illness. I think it’s the uncertainty that is causing anxiety which is completely understandable but most people will recover.
Henry: And I wanted to cover the question of, so if you do show symptoms and come in and you say you’re saying to the practitioners I’ve got sarcoidosis is there anything particular that people should be saying to those, to the person they’re talking to, the health care professional.
Robina: Yes, I think it’s just important to let the health care professional know which areas of your body, which organs, are involved. So if you have sarcoidosis affecting your lungs, I mean, some people just have sarcoidosis affecting their skin or their joints. I’m not minimizing that, but that’s probably going to be less significant that sarcoidosis affecting your lungs or sarcoidosis affecting your heart. So I think it’s just for people to have the facts at their disposal. If possible have some clinic letters with them so they can give them, they can share information. That’s always useful.
Henry: Yeah and keep a note of what medication they’re taking so those professionals can then look at those.
Robina: That is very useful and you know, we’re not, not necessarily saying you’ve got to travel around these days with a folder. You can have it, you can scan the documents onto your phone and put them somewhere safe and just show them and that’s terribly, terribly helpful. Current edication list and any clinic letters.
Henry: That’s important because there must be a decision on continuing that medication and how to manage that and also what other their treatment they’re going to be providing and could there be interactions with those drugs and so those practitioners need to know that.
Henry: And on the heart I think the thing we want to particularly emphasize is that there is a known, it’s up to 50% of people with sarcoidosis have some kind of cardiac involvement. We had the WHO talking about that one of the main factors around mortality was an underlying cardiac condition and we as a charity have been concerned for a long time and we’re working on trying to raise the profile of the understanding of that cardiac involvement so we’re absolutely sure that there are people with sarcoidosis who don’t know how much cardiac involvement they’ve got and so it’s very important should they be presenting with covid-19 to say I have sarcoidosis that means there’s a potential cardiac involvement please, it is important to check my heart so that the strain of being under this disease doesn’t ultimately cause some kind of cardiac event and that’s something we really want to push and talk and we’re going to be doing some more work on that. I think that’s everything. So I know you’ve got to go, you’ve carved out some of your time which has been fantastic and very important. Thank you very, very much for doing this. We know how important it is and hugely appreciated. Thank you everyone for coming in and watching. If you’ve got any more questions or issues do contact us. All our contact details are on the web page just Google SarcoidosisUK and that’s it. Thank you very much for watching thank you very much.
Robina: You’re very welcome.