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 Monday 5 June 2023 with an update about changes to COVID-19 treatments in England.
Follow these links for information
- MS and coronavirus (COVID-19) – what are the risks?
- Are people with MS in the clinically extremely vulnerable or “highest risk” group?
- What’s the latest COVID-19 guidance if I’ve got MS?
- I have MS, what should I do if I catch COVID-19 or someone I live with does?
- How can I get COVID-19 treatments like Paxlovid, sotrovimab, remdesivir or molnupiravir?
- Can people with MS get Evusheld to stop COVID-19?
- Can I still get hospital appointments, MS healthcare and social care during coronavirus restrictions?
- What research is happening into MS and COVID-19?
- What should I do if I can't wear a face mask?
- 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 certain disease modifying therapies (DMTs), frailty or having long-term conditions besides MS. Researchers are continuing to monitor this.
Studies so far indicate that in general being on a 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 presented in October 2021 also suggests that people with MS who do get COVID-19 could be more likely to experience 'long COVID'.
Can COVID-19 cause an MS relapse?
We don’t have much evidence about the risk of COVID-19 in particular causing relapses. But we know infections (including viral infections) can increase the risk of relapses. You can read more on page 17 of our “Managing your relapses” booklet.
Everyone with MS is technically in the "higher risk" group (or “vulnerable” group in Northern Ireland). This used to be called the "clinically vulnerable" group.
The four UK governments have defined this 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.
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.
Sometimes there’s separate guidance for everyone in this group. At other times, the government advice is the same as for the population as whole.
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. The “highest risk list” won’t be used in Scotland after 31 May 2022. 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 main extra 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. Booster jabs can help keep up the protection that vaccines give against COVID-19.
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.
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 (you've had all primary doses, at least 2 weeks ago, and a booster if that's due) and you're 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 (you've had all primary doses, at least 2 weeks ago, and a booster when that's due) and around the time you were vaccinated you were 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 (you haven't had all your primary doses or you had the final one within the last two weeks), or you're not vaccinated.
Until you’ve had all your primary doses of the vaccine and a booster, you're at higher increased risk than anyone who's fully vaccinated. So you 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, though we know it comes down to personal choice.
I have MS, but no recent relapses or symptoms
If you have MS, but you
- 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)
- if 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 and the NHS, or their advice for immunosuppressed people if that applies to you
3. What’s the latest COVID-19 guidance if I've got MS?
The latest COVID-19 guidance for people with MS, family and friends, depends on where you live. Each nation has its own guidelines.
Social distancing rules have been relaxed. We’re all comfortable with different levels of risk. If you’re worried about people not social distancing, you might want to carry a "Give me space" card. It's a card, lanyard or badge that encourages other people to keep their distance.
The NHS has information if you’re worried about coming out of lockdown. And you can call our MS Helpline if you’d like to talk to someone: 0808 800 8000
We've summarised the changes in COVID-19 guidance for your nation:
- COVID-19 guidance in England
- COVID-19 guidance in Scotland
- COVID-19 guidance in Northern Ireland
- COVID-19 guidance in Wales
Most people need to buy COVID-19, for example from high-street chemists. Free tests are available if you're eligible for early COVID treatment assessment. That includes some people with MS. You can order these free COVID-19 tests from the government website.
There might be changes to getting these free tests from October 2023. We'll update when we know more.
Some testing still happens in hospitals and care homes. That includes when anyone has symptoms, but also for everyone admitted to a care home.
COVID-19 and work
Employers don't have to consider COVID-19 in particular in their risk assessments any more. But if you’ve got MS you’re still covered by employment, health and safety, and equality law to keep you safe at work.
If you're in the "highest risk" group (clinically extremely vulnerable)
If you're in the "highest risk" group (clinically extremely vulnerable), there's no longer any particular government guidance. They advise following the guidance for the population as a whole. Read more about working out your own risk based on information from our medical advisers.
If you've been eligible for a “third primary dose “ of the COVID vaccine (for example because of certain MS treatments), there is some extra government guidance.
Free COVID-19 tests are available for anyone who's eligible for early COVID-19 treatment assessments.
There's free testing available for some health and social care settings, and through schemes to monitor the virus and control outbreaks
Employers and workplaces
The government encourages more working from home than before the pandemic, where it's possible and appropriate. That can include "hybrid working" - some time spent at home and some at the workplace.
Employers still have to make workplaces safe and to conduct risk assessments. And they emphasise this is particularly important for those at higher risk. Guidance for employers and employees has been updated by the Scottish government, to help minimise risks
If you're considered "highest risk"
The “highest risk list” (shielding list) hasn't been used since 31 May 2022. The government says that’s because vaccines and treatments mean the risks to most people on that list are now no greater than for everyone else.
The Chief Medical Officer wrote to everyone on the highest risk list about the change, and signposted to ongoing support.
The Scottish Government acknowledges that there are some people from that list who are still at greater risk. For example, that could be you if you take certain DMTs and were eligible for a “third primary dose” of the COVID vaccine. There’s government guidance for anyone considered immunosuppressed like this.
Since Tuesday 15 February 2022, COVID-19 restrictions in Northern Ireland have all been guidance rather than law.
The health minister emphasised that people should still follow the guidance in Northern Ireland. In particular, he stressed that everyone should do what they can to help protect those still vulnerable.
If you've got MS you might be eligible for free COVID-19 tests from the government or pharmacies.
There's still routine lateral flow testing for people with no COVID symptoms for care homes, and in other health and social care settings
The guidance is for employers and employees to discuss what's an appropriate balance of working from home and at the workplace.
If you're considered 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
Free COVID-19 tests are available for anyone who's eligible for early COVID-19 treatment assessments.
COVID-19 and work
The Welsh Government has specific COVID-19 guidance for employers, including risk assessment tools and checklists.
If you're clinically extremely vulnerable
If you were considered clinically extremely vulnerable in 2022, you should have had a letter from the Chief Medical Officer for Wales. This includes extra precautions you might want to take, and support that’s available. You can also find further guidance if you're clinically extremely vulnerable on the Welsh government website.
Government guidance if someone catches COVID-19 varies across the UK.
Across the UK, most people are not usually advised to get a test anymore. But free tests are still available for anyone eligible for early COVID-19 treatment assessment. You should test as soon as possible if you think you might have COVID-19, so you can arrange for early treatment if it's appropriate.
If anyone has COVID-like symptoms, they should try to avoid contact with others, except for essential care. The NHS list of COVID-like symptoms to watch out for has got bigger. It aims to help prevent the spread of other respiratory infections, like seasonal flu, as well as coronavirus.
Guidance for each nation includes specific advice for people at higher risk from COVID-19.
If you take a DMT and get COVID-19
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
If you have MS and you test positive for COVID-19 you might be offered a COVID-19 treatment - like Paxlovid, sotrovimab, remdesivir or molnupiravir.
These and other COVID-19 treatments are now usually offered for people with MS who take certain disease modifying therapies (DMTs) or had recent use of steroids. They’re no longer being routinely offered to everyone with MS.
For example, you might be offered the COVID treatments if you take a DMT which more strongly suppresses the immune system, such as ocrelizumab, rituximab or HSCT.
This follows the latest scientific guidance to the UK Government in April 2023. That guidance looked at who would be most in need of the treatments.
If you have COVID-19 symptoms
Even if you’re don’t think you’ll qualify for these COVID-19 treatments, contact your MS team if you test positive or you think you might have COVID-19. They can advise on how to manage it and whether you should access these treatments.
Changes in England - June 2023
In England, the way to get these treatments is changing. From 27 June 2023, the NHS won't contact anyone automatically about these treatments.
So if you test positive you'll need to contact your GP, NHS 111 or your neurologist as soon as possible. Then they can consider referring you for an assessment for treatment.
Taking the treatments
Some of the treatments are taken as tablets. So someone can collect them for you or you can have them delivered to your home.
Others are given as an infusion at a clinic. When the NHS contact you to discuss your treatment option, they should also discuss how you can get safely to and from the clinic.
Keeping tests at home
If you’re eligible for COVID-19 treatments, you can get free COVID tests to keep at home. That way you can get a result quickly if you test positive, and start the treatment sooner when it’s needed.
Each nation has information about how to get free tests and how to access COVID-19 treatments.
Read NHS information about accessing COVID-19 treatments in England Read NHS information about accessing COVID-19 treatments in Scotland Read government information about accessing COVID-19 treatments in Wales Read government information about accessing COVID-19 treatments in Northern Ireland
Evusheld was licensed in March 2022 to prevent COVID-19 symptoms. It’s available privately, but not on the NHS to anyone in the UK, including people with MS.
Evusheld is the brand name for a combination of two drugs, tixagevimab and cilgavimab.
Why isn’t Evusheld available on the NHS?
Evusheld isn’t available on the NHS because the government says it’s unlikely to work against Omicron and other newer variants of coronavirus. Without evidence to show it will work, they won’t make it available this winter.
And in May 2023, NICE announced its guideline on the use of Evusheld on the NHS. That guideline says Evusheld should not be used on the NHS.
NICE is the organisation that decides what treatments are available on the NHS in England. The Scottish Medicines Consortium (SMC) will apply the same decision for Scotland. And it's likely the decision will also apply in Wales and Northern Ireland.
Does Evusheld work?
Early research showed it reduced the risk of getting COVID symptoms. And no one who took Evusheld in the study got seriously ill from COVID. That research involved mostly people at higher risk from COVID-19.
The study was before the Omicron variant. More recent research suggests that Evusheld isn't as effective against some newer variants of COVID. That includes those likely to become common in the UK.
NICE and the SMC have decided they can't recommend Evusheld on the NHS because of this research.
The UK Government was hoping to run a large research trial to test Evusheld with different variants. But they say this isn’t possible now because Evusheld is unlikely to stop so many of the variants now in the UK. There might still be a trial in future, depending on the variants that emerge.
Researchers might find alternatives to Evusheld through a trial called PROTECT-V. That’s an ongoing trial for different drugs that might treat and prevent COVID-19.
NICE make research recommendations. Those include quicker Evusheld research when there are new variants. NICE also aim to be quicker at responding to COVID care and treatment themselves, so they can react to changes.
From 19 October 2022, Evusheld might be available privately through:
- Private health insurance that you already have
- Private healthcare companies who might sell the treatment even if you don’t have their insurance
- Private medical centres
- NHS hospital departments which offer private treatment
We don’t know how many clinics will offer Evusheld. You should check with any clinic directly to find out if it’s available, the care they provide and the cost.
You might find the NICE guidance helpful if you’re thinking about paying for Evusheld. They explain the evidence they have taken into account when they came to their decision.
Getting the Evusheld jab will cost over £1,000. Prices will vary, but each dose of the drug costs the doctor that much. That's before any costs for their time.
7. 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.
If you're worried about going to an appointment, the hospital or GP surgery can explain how they're managing COVID risks.
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.
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
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 some national governments.
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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