Encephalitis explained Coronavirus and encephalitis Covid-19 and encephalitis - podcast A podcast answering your questions about Covid-19 and encephalitis. Our panel of experts includes Dr Ava Easton, Professor Tom Solomon and Dr Lance Turtle You can also find specific questions by forwarding through the video. 2m 41s - Covid-19 is a coronavirus – but what is that and why is this spreading so much faster than other everyday viruses that cause coughs and colds? Covid-19 is a disease which is caused by a novel coronavirus. Coronaviruses are a family of viruses which get their name because they look a bit like a crown when you take a greatly magnified picture of them. The reason it is spreading so fast is because it is a new virus in humans so none has any immunity at all, nobody has seen it before. That is why it is very important that everybody should do things like wash their hands many times a day, and avoid unnecessary social contact and travel -those are key things that can help the spread of the virus. It is spreading faster than common colds and coughs, but actually not that much faster. Common colds and coughs do spread quite fast. There are other common colds and coughs caused by other coronaviruses that have been in human population for a long time before this coronavirus. They cause very mild disease so you don’t notice it in the same way as you notice this virus which in a small number of people can have very serious effects. 3m 59s - Our family is affected by encephalitis at the moment and we need to go to our local hospital for further tests however that hospital has cases of coronavirus there. Should we still attend? People in this position should follow the advice and guidance given by your local hospital. Your local hospital will be contacting patients and telling them what they should do in different circumstances. If for example someone is acutely unwell with encephalitis, they must go to hospital - this is an emergency and they need urgent treatment. If on the other hand, people have had encephalitis in the past and are due for an outpatient appointment perhaps as follow-up from that illness, this may not be so important and it may be something that you can have cancelled or deferred, but the local hospital should be giving you guidance as to what to do with that. If you have encephalitis and are having on-going treatment to keep the encephalitis under control, then you should be attending for that. Hospitals have infection control policies in place which will limit the spread within the hospital, so they should tell you which areas are safe for you to go to. The fact is that this virus is spreading now in the community, so actually it will be hard to avoid it and just not going to hospital will not be enough to avoid the virus completely. Best things you could do: If you are unwell you should stay at home for 7 days or 14 days if there is illness within the family. Wash your hands throughout the day as many times as possible. Practice social distancing and stay 2 meters away from people. Avoid any unnecessary contact and travel. 5m 48s - I had viral encephalitis in the past. Am I more likely to catch Covid-19 or be at risk if I do catch it? There is no reason to believe that somebody who has had viral encephalitis in the past and has now got over it is at any more risk of either catching this infection or being at risk of severe disease if they do. 6m 24s - My daughter was nine months old when she had a herpes simplex viral encephalitis. She is now six and still on medication for epilepsy as well as a daily dose of antivirals to keep recurring cold sores at bay. She also had pneumonia one-and-a-half years ago. Is she more at risk from Covid-19 than a child without prior health problems? There are a couple of issues to consider. In terms of risk factors for Covid-19, we know that people at risk are those elderly and those who have chronic ill health. Children seems to be less likely to get a severe infection. The fact she is young would make us less concerned. The chronic conditions that she has had are not those recognised as associated with severe infection. Unless there are some underlying predispositions to infection she would be the same as the rest of population. As far as we know, having had pneumonia once is not a risk factor for getting severe disease with Covid-19 like there is the case for with diabetes, chronic lung problems or high blood pressure. She would be at no greater risk than the rest of population. Being age six the risk is extremely low. The number of cases in children under 10 has been very little compared with the number of cases in other age groups. 8m 55s - Does encephalitis fall under the “underlying medical condition” the experts talk about? Does it mean I am in the “vulnerable persons” category? I'm not sure how careful people who have had encephalitis need to be. It depends. If you have had encephalitis which is usually as an acute infection, then that means that illness should be resolved and after that, if you recovered, there are no reasons to think you should be at an increased risk. This also apply to autoimmune encephalitis- if you had that and you were treated and recovered you shouldn’t be at an increased risk. The only exception is for those having ongoing treatment for autoimmune encephalitis with treatment that may suppress the immune system. So if your immune system is suppressed then under those circumstances then we would expect you to be at increased risk. How much increased, we don’t know. I would suggest that anyone who is in this category and is undergoing active treatment with immune suppression for autoimmune encephalitis (or any other autoimmune disease or cancer) they should take additional precautions. They should regard themselves as being in a high risk group and they may want to consider following the government’s advice regarding self-isolating at home and follow the other measures such as washing hands, social distancing, etc. 10m 37s - Can you get encephalitis from Covid-19? We recently read of a patient In China whose CSF or cerebro spinal fluid had tested positive for Covid-19. Does this mean he had encephalitis? I haven’t seen that specific case, so I can’t comment on that without knowing more details. What I can say is there have been a large number of cases in China, we have quite good information on many of these cases and there is not very much in a way of diseases of the brain or symptoms that may be associated with disease of the brain reported. Many viruses cause mostly non-brain disease, non-encephalitis which are called something else and occasionally can get into the brain, so it is plausible that this virus could get into the brain. At the moment I haven’t seen any convincing evidence that it actually does. 11m 35s - Given it's possible to contract autoimmune types of encephalitis after surviving some viral types of encephalitis does this risk increase if infected by the Covid-19 virus? We know that after for example herpes simplex virus encephalitis there is, in a small number of patients, a risk that they will recover from that and then they will go on and get autoimmune encephalitis caused or associated anti NMDAR antibodies, but there is no evidence at all that somebody who has had Covid-19 - not causing encephalitis, just a Covid-19 illness - will get an autoimmune encephalitis. There is nothing to suggest that at all. We have seen many thousands of patients with Covid-19 infection in China, there has been a little bit of neurological diseases acutely, but there has not been any evidence that people with Covid-19 will develop autoimmune encephalitis, but it is a space that we will keep watching. 14m 23s – The questioner in this case had their immuno suppression treatment some time ago. There is some confusion in people's minds, they don’t know if that means they still have immune systems of concern. Somebody like that who is on active immunosuppressant treatment at the moment, they are the sort of people that we do need to be especially careful about. That is why we have these measures such as social distancing, etc We know that at least 99% of people who will get this infection will recover, maybe more like 99.9% will recover, but there is a small proportion who get a severe disease such as the elderly and those who have a chronic illness, and in particular immunosuppression. This is a risk factor. So what precautions do they need to take? These are the people who should be in self-isolation at home, keeping away from anyone who may be ill and shouldn’t go out at all. If a family member becomes unwell, for example a cough (we know that a new cough or a fever could be a sign of somebody with COVID 19 infection), the advice is that they should go and stay somewhere else if at all possible. We need to protect people who are at risk of getting a severe disease. 16m 12s - Some people are concerned that during and/or post treatment for autoimmune encephalitis they have depleted b cells – what does this mean for catching Covid-19 and is there anything they should do? The drug rituximab is a drug which depletes B cells. B cells are the cell which turn into antibody making cells which protect you against a wide range of different things. If you just had rituximab or a similar treatment that it is aimed of knocking out your B cells in order to treat your autoimmune encephalitis two or three weeks ago, your immune system will be lower than that of a healthy person who hasn’t had that treatment. If it was four or five months ago then the effects will be much less and if it was one or two years ago then you could regard yourself as basically normal. 17m 15s - For those who have made a full recovery from autoimmune encephalitis – are they still considered immune compromised and more vulnerable to Covid-19? The answer is no. If you fully recovered and you are not on immunosuppressant treatment, then you are the same as general population. 17m 38s - My family member is still recovering from autoimmune encephalitis and receiving some immunosuppressants. What are the risks to them in this current outbreak and what precautions should we be taking as we are frightened we are a risk to them? The risks to them are that they may become infected with this virus from somebody in the family or somebody outside, and because they are on immunosuppression they are more likely to get severe infection. Severe infection may mean they need to get into hospital. The vast majority of people who get the infection don’t need to go in hospital. We don’t want to sound too frightening - severe infection may mean that they need to get to hospital, they may need special support in terms of fluids as they may not drink well, they may need to go on oxygen. There is a lot of support available in hospital. The precautions to take are for them to be isolated as far as they can, they shouldn’t go out at all, except to go in the garden to get fresh air. Within the house, if the other family members are well, then that is ok. If any of the family members get a cough or any suggestion that they are unwell, they need to keep away from the person who is immunosuppressed. So at first hint of infection, go stay with somebody else. But we need to remember that this may go for several months, so if someone is not well, you don’t want them stuck in a room at the back of the house and feeling miserable. So we really need to look after our mental health as well as our physical health. 19m 39s - My daughter had an autoimmune encephalitis in October and now has a diagnosis of mog antibody disorder - what is your advice? MOG is another form of autoimmune encephalitis. If you are on immunosuppression you are at a greater risk. But if you had the treatment some time ago, and the immune system recovered from that, you are not expected to be at a greater risk. So it depends on what the ongoing treatment in that case is. The advice is to wash your hands regularly, practice social distancing, avoid unnecessary contact and going out. 20m 37s - What are the typical symptoms are and what people should be looking out for? The typical symptoms of Covid-19 are fever and a dry cough. These are the commonest symptoms. Other common symptoms include feeling breathlessness or tightness in the chest. Other systemic symptoms that you usually get with a viral infection are also common: aching of the muscles, fatigue, feeling like a flu-like illness. In some studies where this has been examined, most patients have more than one symptoms, so not just cough or just fatigue. It is usually a combination of different symptoms. So, if you have a new continuous cough or a high fever (these are the cardinals symptoms) that means that you should separate from the person who is undergoing treatment for autoimmune encephalitis by some way - such as staying in a separate room or with somebody else. Please follow the advice regarding social distancing. 22m 53s – Are there any websites you would recommend for advice about Covid-19? The first port of call will be the government agencies responsible for giving public health advice for people in their regions. In the UK it will be Public Health England website, which is on the gov.uk website. It is fair to say that different countries are in different stages in the evolution of this diseases so what applies in the UK may not apply everywhere in the world. However, general advice like washing hands, respiratory hygiene etc is valid everywhere. There is more general advice on the World Health Organisation website as well. 24m 09s - My daughter is 4 years post diagnosis and has been off rituximab and steroids for a year however she is currently taking Imuran, doesn't have any B cells, and is on IVIG. What is her risk and is her immune system able to handle something of this nature? Imuran is a drug called Azathioprine. That is a form of immune suppression. Worth noting Azathioprine is a relatively mild form of immune suppression and actually the risk of serious infections in anyone taking Azathioprine is not that much higher than the background population. If this person had rituximab more than a year ago, I would have expected their B cells to return. That does place that individual at greater risk. On the other hand, that person is being treated by IVIG (which is giving antibodies from other people, and so replacing a bit the function of the missing b cells) so it is perhaps not as bad as all that. Nevertheless, I would say her risk is increased compared with the background population and she should follow the same advice we have already given in similar questions. 25m 53s - I have read that the government are now saying that increased risk from severe illness from the virus includes "chronic neurological conditions," would this include viral or autoimmune encephalitis?# The UK did issue new guidance on 20th March about who is more at risk. Viral or autoimmune encephalitis is not mentioned specifically, so it’s a matter of judgement here. If somebody had those diseases and made a good recovery, they don’t fall into that category of being at risk. If they have not made a full neurological recovery, they should consider themselves in that group, even if they are not named specifically. 27m 18s - If I get Covid-19 what medications should I take and is there anything else you can suggest to help get through it? There’s no anti-virus treatment yet for the virus that causes Covid-19, so it really is symptomatic treatment to get you through the non-specific features - which are primarily fever, cough and aching muscles. For the cough we don’t really have anything that helps specifically with that, but fever and aching muscles can be helped and it’s the kind of tablets you would take for any illness. I would start with paracetamol as that’s safe and we know that’s safe and works fine. There is some suggestion about whether ibuprofen is okay to take or not because it is sometimes associated with bad side-effects. I would start with paracetamol but I would certainly say someone who has taken ibuprofen should not worry and, similarly, if they have taken it for other medical conditions and we know they are benefitting definitely from those medical problems, I would probably not worry too much about that. The idea here is that Ibuprofen is doing something specifically bad in Covid-19 and might cause the receptor of the virus to make you more susceptible to bad disease. That is only an idea and no evidence that is true. The one thing I would say about ibuprofen and drugs of the same class, particularly in older people, and particularly people who are unwell enough to be hospitalised - they do have some significant side-effects, particularly on the kidney and can cause bleeding from the stomach in some cases. If someone is of an older age and, particularly if they are on other blood pressure medications, I would encourage them to avoid drugs like Ibuprofen for any severe acute illness. 31m 21s – Do we need a vaccine for Covid-19? If so, how far away are we from seeing a vaccine that can be used in human population? Vaccines take a long time to make. We do need a vaccine. There are already vaccines that have gone into the earliest phases of trials. To have a vaccine going into Phase One trials within 80 days of the first reported case is incredible. After that there are subsequent Phase 2 and Phase 3 trails. These take longer because you need time to see if they have caused an immune response but ultimately these are large studies which take many, many months to do. If we find a vaccine that does work, we then have to scale it up and that takes a long time too. If everything went as fast as it could do, it is likely the first vaccine would be available in one year to 18 months. 34m 22s – Is there anything else you would like to add? Wash your hands! People should remember the single most important thing they can do is wash their hands and wash them properly and wash them often. And if they do have a cough or a cold, be very careful to catch that in a tissue and then dispose of the tissue and wash their hands. WE NEED YOUR HELP We are expecting unprecedented demand for our services over the next six months and may struggle to meet that rise in demand without support from you, our global family of members and supporters. Please consider making a donation or setting up a regular gift to ensure the Encephalitis Society can continue its life-saving work.