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.
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 "higher risk" group. This used to be called the "clinically vulnerable" group, and it's still called the "vulnerable" group in Northern Ireland.
Everyone with MS is technically in this group 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 four UK governments define the "higher risk" or "vulnerable" group as being more vulnerable to COVID-19 than the average person, but not as much as people in the "highest risk" (or “clinically 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 “highest risk” group?
Some people with MS are considered "extremely clinically vulnerable" or in the "highest risk" group for 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.
Earlier in the pandemic, you might 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.
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, at least 2 weeks ago, and a booster if that's due) 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 extra risk factors, 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 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.
Because of the new Omicron variant of coronavirus, the UK government announced that:
- From 30 November 2021, everyone must wear a face covering in shops and on public transport (unless medically exempt)
- Staff and pupils at secondary schools are strongly advised to wear face coverings in communal areas (this does not include inside the classroom)
- Anyone who's been in contact with a suspected Omicron case must self-isolate - even if they're fully vaccinated
Other social distancing guidance is still in place, including:
- 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
The government is no longer telling people to work from home whenever they can. Read more about your rights at work and COVID-19
Current guidance includes people who are in the "highest risk" group (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 "highest risk" (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
On 23 November 2021, the Northern Ireland Executive emphasised their continuing advice for everyone to work from home if possible.
Other 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 "vulnerable" is especially careful about wearing a face covering, social distancing, limiting household contacts, and hand hygiene. "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.
At the moment there are no rules about support bubbles or extended households in England, Wales or Northern Ireland.
When these rules are in place, you 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.
Support bubble precautions
Everyone should take any extra precautions that the households usually take - for example if anyone is at higher risk from COVID-19, or one of the bubble has a lot of contact outside the house. Find out more about working out your risk from COVID-19
Should I wear a face mask if I go out?
In all four UK nations, face coverings are still legally required in certain situations. In England, the rule to wear them on public transport and in shops was brought back on 29 November 2021.
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.
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. I have MS, what should I do if catch COVID-19 or someone I live with does?
If you have any of the main symptoms of COVID-19:
- Check as soon as possible if you have COVID-19 with a PCR test – that’s a test that needs sending to a lab for the results
- Stay at home and don’t have visitors (except for essential care) until you get your test result – only leave your home if you need to for a test
People you live with or you've been in contact with might need to self-isolate as well. Check all the self-isolation rules for your nation.
Do not go to a GP surgery, pharmacy or hospital in person. You don't need to contact 111 to tell them you're staying at home.
The main symptoms of COVID-19 are:
- 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)
With most DMTs, you can usually carry on taking them if you have mild COVID-19 symptoms. Don't stop taking a DMT without medical advice. Read more about DMTs if you get COVID-19
How to book a COVID-19 test
You can book a COVID-19 test online or by phone.
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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