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New data on risk of getting COVID-19 for people with MS

Findings from a UK survey show that during the early phase of the pandemic, when strict lockdown measures were taken, people with MS had a similar chance of getting coronavirus to the general population. The data reinforces that self-isolating greatly decreased the risk of coronavirus.

Risk of getting COVID-19 for people with MS

Nearly 4000 people with MS took part in the UK MS Register’s online survey between 17 March and 24 April 2020. During this period, government advice was to stay at home. People with MS were advised to take particular care to follow social distancing measures.

A smaller group of people with MS, including those on certain treatments and with significant difficulties breathing or swallowing, were advised to ‘shield' - taking extra precautions to limit contact with others.

With no accurate or accessible test to diagnose COVID-19 at the time, the researchers relied on self-diagnosis. This was based on symptoms, or on information from health care professionals – an approach adopted in other large-scale studies and in line with UK government policy not to seek medical advice for mild symptoms.

6.1% of people with MS who took part reported getting COVID-19. 54 of these had a diagnosis by a healthcare professional and 37 had a positive test.

The team also collected data from siblings of the participants who didn’t have MS and didn’t live with them. They found the proportion of siblings contracting COVID-19 was similar (6.2 %). The rate was also similar in the general population.

It’s important to remember this data comes from the period of lockdown so we don’t know what will happen as measures are relaxed. This data also doesn’t tell us about how severe people’s COVID-19 symptoms were.

The role of self-isolation for people with MS

As you’d expect, the data points to a key role for self-isolation in protecting people against getting COVID-19.

759 of 3,812 people with MS said they were self-isolating. Of these 0.3% got COVID-19. Of the participants who were not self-isolating, 4.5% got coronavirus. And of the people who did get COVID-19, the vast majority (94.6%) weren’t self-isolating.

Younger people with MS were also more likely to get COVID-19. This might have been because fewer of them were self-isolating.

The study also found 23.2% of participants with progressive MS were self-isolating compared to 17.9% of participants with relapsing MS. Participants with progressive MS were less likely to have self-diagnosed or confirmed COVID-19.

However, when the team just looked at participants who were not self-isolating they found the chance of getting COVID-19 was similar in people with relapsing and progressive MS. This suggested people with progressive MS were less likely to get COVID-19 because more of this group were self-isolating.

Data on DMTs, coronavirus and MS

Most people with MS who took part in the survey weren’t taking disease modifying therapies (DMTs). And people with MS were self-isolating at similar rates regardless of if they were on DMTs or not.

There was no link between taking a DMT and having confirmed COVID-19. But it wasn’t possible to test for the association between individual DMTs and COVID-19 due to the low numbers of people on each treatment.

Other research from Italy, France and China showed that in general DMTs do not seem to increase the chance of getting COVID-19.

However, we know the risks associated with COVID-19 and DMTs can differ depending on the type of treatment a person is taking. And there are specific cases where taking a DMT is likely to increase your risk. Scientists advise special precautions for people taking these drugs.

What’s the risk of getting more severe COVID-19?

This data didn’t look at the coronavirus symptoms that people with MS experienced. So it doesn’t tell us whether people with MS were more likely to experience more severe COVID-19 symptoms than the general population.

The UK MS Register are still collecting data on symptoms from people with MS and from doctors across the UK. This data is being analysed so we will know more about this soon.

Because this a new virus we still don’t fully understand what factors might increase your risk. But our medical advisors have put together a list of things that may put you at higher risk, based on evidence so far.

You can read the full research paper in the BMJ’s Journal of Neurology, Neurosurgery & Psychiatry.

Take the COVID-19 survey on the MS Register website