If you've ever called our Enquiry Service, you may have spoken to Janice, who’s worked at the MS Trust for a number of years. Janice is our go-to person when it comes to keeping up with the world of MS research, and she's also ensuring our new A to Z page on the coronavirus is kept up to date with the latest information and guidance. Last week, we chatted to her about the coronavirus and what it might mean for people with MS.
People with MS are worried and confused right now, can you start by telling us, what is the coronavirus and how it’s affecting people?
Well, coronavirus is the name of this new virus and the name of the disease it causes is Covid-19, that’s why you see the two different names appearing across the media. The main symptoms of Covid-19 are a new and continuous cough and also a high temperature. You can check that, by touching your chest or your back, if they feel hotter than normal you might have a temperature. With Covid-19 you might notice a shortness of breath. If you develop those symptoms the current government guidance is that you should self-isolate at home for 7 days if you live alone or 14 days if you live with other people. The NHS website has more information on what you should do if you notice these symptoms.
There's a lot of confusion about the immune system and MS. Some people think that the MS immune system is lower than your average person. Is this the case?
This isn't really the case, in fact you could say that the MS immune system is actually overactive as it's attacking the coating of your nerve cells. It's actually doing more work than it should, so it is not lower than your average person’s immune system. The one exception to that is if you are taking one of the more effective MS drugs, which work by damping down your immune system and can leave you more susceptible to catching viruses. We have more information about which DMDs this includes on our website.
It's important to recognise that the government have identified people who they think might be more vulnerable to coronavirus, which includes people with multiple sclerosis. However people with MS are not necessarily more likely to catch coronavirus, but if they do they might be more vulnerable to complications from it. So the government are advising that people with underlying health conditions including MS are particularly careful in avoiding infection and that means doing things like washing your hands more often and staying at home as much as possible to reduce your contact with other people. So people with MS are not more susceptible, but if they did contract it, they could potentially have more serious complications than someone without underlying health complications.
If you are on DMDs, or any other treatment that might affect your immune system, what should you do?
The first thing is, don't stop taking your medication unless you've been advised to do so by a health professional. If you're especially concerned, do try and get in touch with your MS team, either your MS nurse or your neurologist.
There are four DMDs that may increase your risk of catching coronavirus, these are Gilenya, Ocrevus, Mavenclad and Lemtrada. It's important to say that for most people the benefits you're getting from taking these drugs, in terms of fewer relapses and fewer lesions showing up on MRIs, will out-weigh the slight increased risk of infection. So overall it could be better for you to continue taking one of these drugs and be extra careful to avoid coronavirus infection. In addition, suddenly stopping one of these drugs like Gilenya can actually cause a sudden increase in MS activity. It's important to review your own individual situation with your MS team and agree what's right for you.
It’s been reported that a very small number of people who are on one of the DMDs have caught coronavirus and those people seem to be recovering well. At the moment it would seem that people on a DMD manage fine if they catch coronavirus, but obviously the data is very limited at the moment. To build up a better picture, the UK MS Register has launched a survey to look at how people are dealing with guidance from the government as well as capture data on confirmed or unconfirmed cases of Covid-19 in people with MS. Anyone with MS can sign-up and help to improve our knowledge of Covid-19 and MS.
Do we know if MS teams are still operating as normally at the moment?
Well, as we're all seeing in the daily news, NHS services are hugely stretched right now. Some nurses and doctors have developed symptoms of Covid-19 and are self-isolating, many others have been taken away from MS services to work in A&E, intensive care or on hospital wards.
MS teams will be trying their best to keep their service running during the crisis. Where there is more than one MS nurse in a team, I'm sure they'll be trying to keep at least one available to answer calls. Where there is just one MS nurse, it may prove impossible to keep the service open. If you can't get through to your MS team, you can contact your GP or NHS 111 for advice.
Should people with MS be isolating for 12 weeks?
Advice has changed in recent weeks and we're hearing from people who are not sure how government guidance covers their own situation. I think the best way to look at this is to err on the side of caution and take the highest level of precaution you can to avoid contact with other people for the time being.
As a bare minimum, we are all being asked to stay at home except for very limited purposes, such as essential shopping. This covers most people with MS who are included in the vulnerable group and are being asked to take extra care for social distancing, hand washing etc. It's not clear how long this is likely to continue for. These measures came into effect on 23 March and the government has said that they will review after three weeks.
The government has also given guidance about shielding for extremely vulnerable people who could have very serious complications if they were to develop Covid-19. Letters have been sent to about 1.5 million very high risk people, giving even more stringent guidance to avoid face to face contact for at least 12 weeks from the day you receive your letter. People with MS who might get a letter include those with more severe disability, particularly those who have problems with swallowing or regularly get chest infections. Some neurologists are also saying that it should include people who have had Lemtrada, Mavenclad or a stem cell transplant in the last 3-6 months as their immune system is much less able to fight off an infection. Some people have had letters with advice from their MS service, others haven't and this has led to confusion. Again, I would say that you may well feel that you want to take extra precautions by avoiding all contact with people not in your household for the time being. If you are able to do this, then you will be keeping the risk of catching coronavirus to a minimum.
Don't forget, if you have symptoms of Covid-19, you need to self-isolate for 7 days if you live alone, or 14 days if someone in your household develops symptoms.
For people that are self-isolating, will their drugs still be delivered as normal?
As far as we are aware, home delivery services will be doing everything they can to continue making deliveries. The feedback we have had to date suggests that there haven’t been any problems but we are monitoring this.
However, if people have their MS drugs delivered to an office address or other alternative address it might be an idea to change this to a home address. So have a think about where your drugs are currently delivered and could there be a more practical place?
If you have a hospital appointment for an MS related issue or anything else, should I still attend?
Hospitals are avoiding all face-to-face appointments at the moment and restricting visits to prevent the spread of coronavirus. If you have a planned appointment coming up, check your hospital website for current arrangements. Most routine outpatient appointments have been canceled, although where possible your appointment will be rearranged as a telephone or video appointment. If there are changes to your appointment, you should be informed by the hospital.
If your MS is more advanced and you are worried about breathing issues, is there any specific precautions you should take?
If your MS is more advanced and you have more severe symptoms, the chances are that if you were to catch coronavirus you would be a greater risk of developing more complications such as pneumonia, so I think the best advice for someone with more severe MS, would be to follow the guidance to self-isolate. Be careful around people and extra careful about hygiene. Take extra care and if you can self-isolate, that would be a sensible thing to do. Better to be safe than sorry.
If people have other questions, the MS Trust Enquiry Service is still open. If possible, please send an email to email@example.com. If you can't access email, you can phone our Freephone number which is 0800 032 3839 and leave a message on our answerphone. If you leave a message with your name, phone number and perhaps a brief description of your query, we’ll then call you back. We appreciate that lots of people are seeking information and everyone has individual circumstances that make them unique. It's also important to remember that even with corona, MS is still MS and people will still have questions not related to corona.
A message from our CEO on the coronavirus outbreak
MS Trust CEO David Martin has a message for the MS community about the coronavirus (COVID-19) outbreak and how we are supporting people with MS in these uncertain times.
How to stay calm and carry on during the coronavirus crisis when you have MS
With the constant and ever-changing advice about what to do in the current COVID-19 outbreak, you might feel like you are struggling. You might worry about having to self-isolate or getting ill yourself. Here, Helena Jidborg Alexander, from the MS Trust's Information Team, takes a look at ways to look after your own mental wellbeing during these strange and scary times.
Coronavirus and MS
Read our updated guidance on Covid-19, the vaccines, and staying safe with multiple sclerosis.
With a little help from my furry friend
21 Jul 2021 - 00:00
Lisa, who was diagnosed with MS in 2008 tells us about how creativity and a little help from Spud the hamster helped her get through tougher times.
People with MS thoughts on freedom day
19 Jul 2021 - 00:00
From Monday the 19th of July, most covid restrictions have been lifted in England but what are people with MS really feeling about the so called "Freedom day"?
In this article we talk to some people with MS about their feelings, plus we cover what you can do if you are worried about the lifting of restrictions.
Just keep wheeling
14 Jul 2021 - 00:00
Emily, also known as The Wibbly Dinosaur, discusses her feelings on mobility aids and how using a wheelchair provides her with the freedom to continue doing the things she enjoys.
Sign up for updates from us
Keep up-to-date with the latest MS news, explore new research, read the stories of people living with MS, find out practical tips from MS experts, and discover exciting fundraising opportunities.