MS and coronavirus care and support
We’ve been talking to people across the UK about multiple sclerosis and COVID-19. These are some of the questions that crop up the most.
We’re working closely with our medical advisers and the Association of British Neurologists (ABN) to keep this page updated. So keep checking back for the latest information.
We updated this page on 8 October 2021 to reflect social distancing rules in Northern Ireland and the government's letter to everyone in England who used to be on the shielding list.
Follow these links for information
- MS and coronavirus (COVID-19) – what are the risks?
- Are people with MS in the clinically extremely vulnerable group?
- How should I do social distancing and self-isolation if I’ve got MS?
- I have MS, what should I do if I catch COVID-19 or someone I live with does?
- Can I still get hospital appointments, MS healthcare and social care during coronavirus restrictions?
- What's the latest on the coronavirus vaccines?
- Can I get help with shopping and prescriptions?
- Are there benefits or financial support I can claim?
- What rights and support do I have at work?
- MS, carers and care at home
- How can I get emotional help?
Early research indicates that having multiple sclerosis (MS) in itself doesn’t increase your risk of getting COVID-19.
But some people with MS could be at greater risk of getting coronavirus, or of complications if they catch it. For example, that could be because of frailty or having long-term conditions besides MS. Researchers are continuing to monitor this.
Research presented in October 2021 also suggests that people with MS who do get COVID-19 could be more likely to experience 'long COVID'.
Infections and relapses
We know infections (including viral infections) can increase the risk of relapses, though there’s limited evidence about COVID-19 specifically. You can read more on page 17 of our “Managing your relapses” booklet
DMTs and COVID-19
Studies so far indicate that in general being on a disease modifying therapy (DMT) for MS doesn’t increase your risk of getting COVID-19 or having worse symptoms. But there are some specific cases where a DMT is likely to increase risk.
You should follow your MS team's advice about treatments and any extra social distancing measures they recommend.
Research into MS and coronavirus
There’s lots of research happening to help us learn more about multiple sclerosis and coronavirus. But as this coronavirus is so new, we don’t fully understand how it affects people with MS yet. Help us understand more about how the pandemic is affecting our community by taking the MS Register survey on coronavirus and MS
- Find out what we’ve already learned from responses to the MS Register survey
- Read our blog about an early study on COVID-19 and MS in Italy
- Find out what to do if you think you or a loved one have COVID-19
Everyone with MS is technically in the "clinically vulnerable" group. This is because MS can be associated with increased risks, depending on your symptoms, treatment or other factors. And the government's data doesn't hold that level of detail about each person.
The government define the "clinically vulnerable group" as being more vulnerable to COVID-19 than the average person, but not as much as people in the “extremely vulnerable” group. It's very similar to the group of people eligible for the free annual flu jab.
Government advice about social distancing for everyone in the clinically vulnerable group depends on the restrictions in your area.
2. Are people with MS in the “clinically extremely vulnerable” (CEV) or “high risk” group?
Some people with MS are considered "extremely clinically vulnerable" or "high risk" from COVID-19. This could be because of a particular treatment or the way your MS affects you. Or it could be a combination of things.
Over the last year or so, you may have received a shielding letter saying you’re clinically extremely vulnerable. Shielding programmes are paused across the UK, and the shielding list in England isn’t used anymore. But it’s still important to bear in mind you have higher underlying risks from COVID-19.
Your doctor should consider you to be clinically extremely vulnerable if you:
- have significant difficulties with breathing or swallowing (for instance if you need artificial feeding)
- have taken alemtuzumab (Lemtrada) within the last 4 weeks (or longer if specified by a clinician)
- have had HSCT treatment in the last 12 months (speak to your MS team to understand at what point your risks will reduce)
- have taken cladribine (Mavenclad), ocrelizumab (Ocrevus) or alemtuzumab (Lemtrada) within the last 6 months AND have 2 or more other risk factors listed below
You might also be considered clinically extremely vulnerable by your consultant or GP if 2 or more of the other risk factors below describe your situation.
Early research indicates that having multiple sclerosis (MS) in itself doesn’t increase your risk of getting COVID-19.
But some people with MS could be at greater risk of getting coronavirus, or of complications if they catch it. There is also some evidence that vaccines may not have worked as well for some people with MS as for others.
We need more evidence to know for sure. But based on what we know now our medical advisers have estimated the risks for people with MS in different situations.
We hope this will help you make decisions about what situations you’re comfortable with as social distancing relaxes across the UK.
You should also consider the number of coronavirus cases in your local area. If these are significantly higher than the national average, it may be best to take extra precautions regardless of your risk level.
The main extra risk factors are:
- you’re over 70
- you have trouble with things like preparing meals and housework because of frailty
- your frailty or MS symptoms mean you usually need an aid for walking, or you use a wheelchair (score 6.0 or higher on the Expanded Disability Status Scale)
- you have another long-term health condition besides MS, especially obesity, high blood pressure (also called hypertension), or diabetes. See a fuller list of long-term conditions that also apply on the US National Library of Medicine website
- you're pregnant
- you’ve had a course of alemtuzumab (Lemtrada) or cladribine (Mavenclad) in the last 6 months
- you’ve had a course of ocrelizumab (Ocrevus) or rituximab in the last 12 months
Your MS team will be more familiar with your personal circumstances. So if they tell you to take precautions for any other reason it's very important you follow their advice.
How does my risk change if I’ve been vaccinated?
Vaccination reduces the risks from COVID-19 for people with MS and is generally very safe.
However, some DMTs might reduce the effectiveness of any vaccine because they prevent the immune system from mounting a complete immune response to the vaccine.
Our MS Society medical advisers, who are some of the leading clinicians for MS in the UK, have produced a consensus statement on DMTs and COVID-19 setting out the evidence around this in more detail.
3 categories of vaccine protection
Evidence around how effective vaccines are for different groups of people with MS is still emerging. Based on what we know right now, we think there are three categories of vaccine protection:
Vaccine category A
You are fully vaccinated (have had both doses, with second at least two weeks ago) and treated with
- glatiramer acetate (Copaxone and Brabio)
- teriflunomide (Aubagio)
- dimethyl fumarate (Tecfidera)
- beta interferons
- natalizumab (Tysabri)
- cladribine (Mavenclad)
- alemtuzumab (Lemtrada) more than 12 months ago
- no treatment (not on a DMT)
People in this category with 0 - 1 extra risk factors are at similar level of risk as everyone else in the UK. If you have 2 or more, you’re at increased risk so should be extra careful to follow precautions.
Vaccine category B
You are fully vaccinated and treated with
- ocrelizumab (Ocrevus)
- alemtuzumab (Lemtrada) less than 12 months ago
- ofatumumab (Kesimpta)
- fingolimod (Gilenya)
- ozanimod (Zeposia)
- siponimod (Mayzent)
If this is you, even if you have 0 extra risk factors you are at increased risk, so should be extra careful.
If you have 1 or 2 extra risk factors, you’re at higher increased risk, so should be even more careful to follow precautions.
Vaccine category C
You are partially vaccinated (only one dose or second dose received within the last two weeks) or not vaccinated.
Until you’ve had both doses of the vaccine, you are at higher increased risk so should take full precautions. We know some people can’t have the vaccine for medical reasons. Unfortunately this does mean higher increased risk (unless you are in the very specific situation explained in the next section).
Generally we expect the vaccine will give at least some protection from COVID-19 for everyone with MS, so we encourage people to get it if possible, while acknowledging that this comes down to personal choice.
I have MS, but no recent relapses or symptoms
If you have MS, but you
- haven’t had a relapse or symptoms in the last 5 years
- have no other risk factors
- are not taking a DMT
Your risk is similar to everyone else in the UK’s. This means if you have been vaccinated your risk is similar to another vaccinated person. And if you haven’t your risk is similar to another unvaccinated person.
As with everyone, getting vaccinated reduces risks from COVID-19 both for you and those around you.
People who have increased or higher increased risk could consider additional precautions like:
- wherever possible requesting to work from home, if this is not possible asking your employer to conduct a COVID-19 risk assessment in light of your higher risks
- avoiding crowded places, especially indoors (for example shops or public transport at peak times)
- where possible asking friends and family to undertake home COVID tests before social gatherings
- more generally following the advice for people at higher risk set out by your government, or their advice for immunosuppressed people if that applies to you
3. How should I do social distancing and self-isolation if I’ve got MS?
General guidance for everyone about social distancing includes:
- limiting the number of people you meet
- keeping a distance of 1 or 2 metres from people outside your household
- washing your hands regularly
- using a face covering
If you’re worried about people not social distancing, you can carry a card, lanyard or badge that encourages other people to keep their distance.
Each UK nation has its own detailed guidance and rules about how social distancing applies.
From 19 July, social distancing rules in England have ended. But there is still guidance for everyone to be cautious. That includes:
- wear a face covering in crowded areas such as public transport
- meet people outdoors when possible
- let in fresh air when you’re indoors
- limit the close contact you have with people outside your household, and the time you spend with them in close contact
- only increase close contact with others gradually – don’t meet up with lots of people straight away
The government is no longer telling people to work from home whenever they can. Instead, they say they expect a gradual return of people to workplaces. Read more about your rights at work and COVID-19
This new guidance includes people who are clinically extremely vulnerable. The government makes it clear that everyone should consider the risks to themselves and those around them. People who are clinically extremely vulnerable are still more at risk of being seriously ill from COVID-19. And if you were on the shielding list, you should also have had a letter from the government about things to consider now shielding has ended.
We’re all comfortable with different levels of risk. If you’re worried about people not social distancing, you might want to carry a card, lanyard or badge that encourages other people to keep their distance.
And you can call our MS Helpline if you’d like to talk to someone: 0808 800 8000
In Scotland, there are 5 levels of alert for different areas of the country, from 0 to 4.
From 9 August, the government has announced that almost all legal restrictions have ended. This moves the country as a whole to below level 0, though not every restriction has gone.
Scotland has moved below level 0. Changes include:
- All venues including nightclubs can re-open, without physical distancing
- There will be no limits on social gatherings at home, in gardens or in public (except for general limits on large events of several thousand people)
Some measures will stay in place, including face coverings for indoor public places and on public transport (unless you’ve got a medical reason not to). And they still advise working from home where possible.
The Scottish government still gives general advice saying people should:
- get the vaccine when you are offered it
- wear a face covering, clean hands and surfaces regularly
- avoid crowded places and keep your distance from other people where possible
- meet outside if you can, and open windows when indoors
- if you have symptoms get a test and stay at home
- take regular tests if you don’t have symptoms to reduce the risk of spreading the virus
- use the Protect Scotland and Check-in Scotland apps
Guidance for employers and employees has been updated by the Scottish government, to help minimise risks.
If you're considered clinically extremely vulnerable, the Chief Medical Officer for Scotland will be writing to you with advice and information about changes. The government has also published support and guidance for people who were on the shielding list (now called the 'highest risk list').
We’re all comfortable with different levels of risk. The chance to be close to friends and family might be wonderful news to you, but if you’re worried about people not social distancing, you might want to carry a card, lanyard or badge that encourages other people to keep their distance. Call our MS Helpline if you’d like to talk to someone: 0808 800 8000
Free COVID 19 tests are now available for people who don’t have any symptoms. You can order them online from NHS Inform
Restrictions include a limit of 15 people from 4 households meeting in a private home. Children under 12 don’t count towards this total.
There are now no restrictions on how many people can meet in a private garden.
The Executive has guidance on social distancing and other measures to help control the risks in different settings. This includes:
- The closer you are to others, the higher the risk, so the risk is higher at 1 metre than at 2 metres away from someone
- The level of risk increases if there are no other measures taken, like hand washing, face coverings and protective screens, or good ventilation
- Outdoors is lower risk than indoors
- The highest risk is in an indoor, crowded, poorly-ventilated space for a long period of time
The Northern Ireland Executive recommends everyone who's ‘clinically vulnerable’ is especially careful about wearing a face covering, social distancing, limiting household contacts, and hand hygiene. 'Clinically vulnerable' includes everyone with MS (this is not the same as 'clinically extremely vulnerable').
There's guidance from the Northern Ireland Chief Medical Officer for anyone considered ‘clinically extremely vulnerable’. This includes advice on returning to the workplace if home working isn’t possible (since 12 April).
The MS Society Resource Centre in Belfast isn’t fully open at the moment, but some one-to-one services have started up again. And you can get in touch by email and phone as usual.
In Wales, there are different levels of alert (level 4 has the most restrictions, level 0 has fewer).
From Saturday 7 August, the whole of Wales moved to level 0 (zero). It's not the end of all restrictions, but changes include:
- no more legal limits on the number of people who can meet indoors - in private homes, public places or at events
- all businesses and premises can open, including nightclubs
- people should still work from home wherever possible
People still need to wear face coverings in many places indoors, unless you don't wear one for medical reasons. But the law doesn't say anymore that people have to wear them in restaurants, pubs, cafes or nightclubs.
The government is asking everyone to do what's sensible to protect themselves and others, not just do what the law allows. Their guidance includes:
- get both vaccinations if you can
- self-isolate and get a test when you have symptoms, and avoid others if you feel ill
- keep your distance from others wherever possible
- limit how many people you meet with
- meet outdoors or in well-ventilated places
- avoid crowded places where possible
- keep up good hygiene by washing hands, sneezing into tissues and keeping surfaces lots of people touch clean
- wear a face covering – particularly in crowded spaces or when you can't keep a good distance
If you’re clinically extremely vulnerable, the Welsh government has specific guidance. This includes extra precautions you might want to take, and support that’s available. Read the Welsh government guidance if you’re clinically extremely vulnerable
Contact tracing apps for mobile phones are now available in every UK nation. These apps could help control the spread of coronavirus. The contact tracing app for England and Wales will also give you local risk updates and a COVID-19 symptom checker.
They don’t pass on details of your location to the NHS. That information stays on your phone. But they can tell you if you’ve been in contact with someone who’s tested positive for coronavirus. And if you test positive, it can tell people you’ve been close to so they can self-isolate. It doesn’t tell them who you are or where you are.
People with MS can be part of a support bubble or ‘extended household’, so it’s easier in lockdown to see close friends or family who don’t live with you. There are different rules for support bubbles in each nation. But generally they mean you can think of yourselves as one household for most coronavirus guidelines. You should check for local restrictions that affect the guidance.
With an end to restrictions on social contact in England, there are no rules about support bubbles at the moment.
If you live in Scotland and you’re the only adult in your household, you can form a ‘support bubble’ or ‘extended household’ with 1 other household.
In Wales, any 3 households can join together as an extended household. And this can be 4 households in some, limited circumstances.
In Northern Ireland, a bubble (or ‘support unit’) can be up to 10 people from two households. This still applies after the recent announcement by the Executive on 27 July 2021.
In all UK nations, you shouldn’t change your bubble once it’s formed.
Support bubble precautions
Everyone should take any extra precautions that the households usually take - for example if anyone is clinically vulnerable, or one of the bubble has a lot of contact outside the house.
Although the risk for individual people with MS from COVID-19 varies widely, everyone with MS is technically considered ‘clinically vulnerable’. Find out more about working out the risk from COVID-19
Support bubbles for clinically extremely vulnerable (CEV) people
If you’re considered ‘clinically extremely vulnerable’, you can be part of a bubble, unless local restrictions say otherwise. Check the guidance for your nation for any detailed advice for people considered ‘clinically extremely vulnerable’. Everyone in the bubble should take precautions as they would in a single household.
- Read the Scottish government guidelines on extended households for your area
- Read the Northern Ireland Executive guidelines for support bubbles
- Read the Welsh government guidelines for extended households
Should I wear a face mask if I go out?
In England on 19 July the legal requirement to wear a face covering inside enclosed public spaces ends - although the government still recommends wearing masks in crowded areas.
In Scotland, Northern Ireland and Wales, face coverings are still legally required in certain situations for the time being.
Wearing a face covering is not a replacement for proper social distancing and good hygiene. But it might help protect other people if you’re infected with coronavirus – even if you don’t have coronavirus symptoms.
The UK government has a guide to making face-coverings at home. And the Welsh government has a video explaining how to make a 3-layer face covering which they recommend.
It’s important to wash your hands before putting your covering on and taking it off. And we should all avoid touching our faces as much as possible, whether we’re wearing a face covering or not. Coverings should be washed after every use, or thrown away if they’re disposable.
Each government has written guidance which says face coverings could be useful if you’re in a small space and social distancing isn’t possible. For example, on public transport or in shops.
In some cases, these are rules people can be fined for breaking. Each nation also has guidance for face coverings in schools.
If you can't wear a face covering
If your MS or another condition means you can’t wear a face covering, or take it on or off, you don’t have to wear one.
You don’t need to prove you’re exempt. But if you feel more comfortable letting people know, you can download a badge to print off or show on your phone from the UK government website.
- Read the full UK government guidance on face coverings
- Read the full Scottish government guidance on face coverings
- Read the full Northern Ireland guidance on face coverings
- Read the full Welsh government guidance on face coverings
4. What should I do if I have MS and get COVID-19 or someone I live with does?
You should self-isolate for 10 days if you have a positive COVID-19 test or any of these symptoms:
- a high temperature – you feel hot to touch on your chest or back
- a new, continuous cough – this means you've started coughing repeatedly
- you lose your normal sense of smell or taste, or notice it changes (the medical term for this is anosmia)
If you are taking a DMT, you should be able to continue taking it if your symptoms are mild.
Do not go to a GP surgery, pharmacy or hospital in person. You do not need to contact 111 to tell them you're staying at home.
If anyone in your household or support bubble has symptoms or a positive test, you should all follow the rules on self-isolating. Try to stay away from the people with symptoms and take the government advice about hygiene.
- Read the English rules for on self-isolating from the UK government
- Read the Welsh government rules on self-isolating
- Read the Scottish rules on self-isolating at NHSinform
- Read the Northern Ireland government rules on self-isolating
Anyone with symptoms should ask for a test to check if it is COVID-19. This should be what’s known as a PCR test, not only a ‘lateral flow test’. The sooner you can get tested, the more it can help control the spread of the virus.
If your test is positive, the NHS (or Public Health Agency in Northern Ireland) will get in touch with you. You’ll need to tell them about people you’ve been in direct contact with, and those people might then be told to self-isolate and where they can get support if they need it.
Book a COVID-19 test online in England and Wales or call 119.
Book a COVID-19 test online in Northern Ireland or call 0300 303 2713
Test and trace support payments
In England, Wales and Scotland, if you’re told to self-isolate by the test and trace service you might be able to get a support payment of £500, to help cover lost earnings. In Northern Ireland, you might be able to get other financial support if you’re told to self-isolate.
Support with care, shopping and keeping active if you need to self-isolate
- Find support with care at home if you’re self-isolating
- Find support to shop and collect prescriptions
- Find ways to stay mentally and physically active in lockdown
5. Can I still get hospital appointments, MS healthcare and social care during coronavirus restrictions?
You should contact your MS team as you normally would. Our medical advisers stress the importance of attending appointments with healthcare professionals, or seeking help if you feel seriously unwell.
We know many MS services have been disrupted during the pandemic and this has resulted in long waiting times for some care. So it might be more difficult to get appointments for routine things like annual reviews. You're likely to be offered an appointment by phone or video call where it's not essential to be seen face to face.
Remember, always contact your team if:
- you have signs of a relapse
- you go to hospital for any reason (even if you’re not admitted)
- you’re considering any changes to how you take your DMT
Social care services and the Coronavirus Act
The Coronavirus Act and Coronavirus (Scotland) Act could affect your social care services if you live in England, Wales or Scotland.
DMT homecare delivery service
If you have homecare services to deliver your DMT, generally these should carry on without a problem. If they are delayed or you have any difficulties contact your MS team immediately.
Talk to someone on the phone
We're here for you. If you’re worried about your MS and coronavirus and want to chat to someone, call our MS Helpline on 0808 800 8000. We’re here Monday to Friday, 9am to 7pm except bank holidays.
If you'd like to talk your worries through online with other people who know MS, visit our Online Community Forum today.
Or join one of our Virtual Wellbeing sessions and connect online with other people living with MS across the UK.
Ask an MS health expert
Or you could sign up for an information webinar. We've got plenty to choose from, take a look at our online sessions and see what suits you.
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