People with MS in the UK are providing vital information on Covid-19

The MS Society is looking for people with multiple sclerosis (MS) to provide vital information through the UK MS Register on how coronavirus is affecting them.

MS damages nerves in the body and makes it harder to do everyday things, like walk, talk, eat and think. Having MS alone does not increase your risk of getting Covid-19, but many people with MS are at an increased risk of infection, or severe complications.

Thousands with the condition are classified as extremely vulnerable, and have been asked by the Government to self-isolate for a period of 12 weeks.

The UK MS Register team have put out a first – ‘baseline’ questionnaire on Coronavirus (COVID-19) and MS to collect data on how coronavirus is affecting People with MS (PwMS), and to learn if people on Disease Modifying Treatments (DMT) are really more susceptible, what advice should be given and to drive future recommendations.

The team is also trying to capture how PwMS feel about the current situation, to understand what sort of information and support PwMS have been given, and if behaviour has changed as a consequence. The type of information provided by PwMS could help the way COVID-19 is dealt with, and inform how future pandemics may be approached.

Rod Middleton, Programme Manager of the UK MS Register at Swansea University Medical School, said: This study is important for people with MS so that we can understand how pandemics like this can affect them and hopefully learn how to manage this for the future. The Register has a unique ability to model many of these factors as we have longitudinal data from PwMS in some cases going back 8 years. We can see in great detail how new factors impact on all aspects of peoples MS, their quality of life, fatigue and mood.

Dr Susan Kohlhaas, Director of Research and External Relations at the MS Society, said: “More than 130,000 people live with MS in the UK, and we are asking every one of them to join this study to help us understand more about Covid-19. There’s so much we don’t know about this virus and only real world data will help us change that.

“This is a worrying and uncertain time for all of us, but many people living with MS are especially vulnerable, and this study will allow us to support them as best we can.

During the first 24 hours alone, 1,174 people with MS completed the questionnaire – including 11 with potential cases of coronavirus – but more people are needed to help researchers fully understand the virus and its impact.”

Professor Richard Nicholas is co-leading the study, which is run by the UK MS Register. He says: “MS is unpredictable and different for everyone, and we understand some people are at greater risk from coronavirus than others – such as those who are taking MS treatments that lower the immune system. But all the current advice is based on our understanding of how treatments work, and we urgently need more data to establish the facts. For example, we anticipate there could be some treatments that actually lower a person’s risk level of contracting the virus, but can only confirm this through research.

“This simple online survey can help us identify when and how symptoms of Covid-19 occur in people with MS, so we can provide the best possible guidance on treatment and better support for them in the future.”

Responses also reveal changes in behaviour in response to Covid-19, and indicate that 90% of people with MS in the UK are currently in self-isolation.

One reason this research must be conducted now rather than after the crisis has peaked is to avoid the issue of recall bias, where memories are affected by any new information learned about how the virus.

Study co-lead Professor Nikos Evangelou, explains: “As testing becomes more widely available and we know who did and didn’t have the virus, we’ll be able to look back at our findings and determine whether different treatments have a negative or positive impact on the risk of getting Covid-19, or the severity of symptoms. Every response counts.”

The MS Register– an ongoing study based at Swansea University, and funded by the MS Society – will publish regular updates of their results so clinicians and people with MS can benefit from the findings, and make better decisions about treatment throughout the pandemic.

Anelma Beech, 48, lives in North Wales and has relapsing MS. She has signed up to the MS Register study, and says: “I’m isolating at the moment because I’m in the high risk group, and have not been able to see anyone. It’s tough, but while we’re all stuck indoors we can do something really valuable, and tell the experts how coronavirus is affecting us. If we don’t, they can’t do anything about it. And the more information they have the better equipped they’ll be to deal with problems in the future. It’s a scary and uncertain time but this is a really important contribution people with MS can make to help make things a bit clearer.”

To take part, people with MS can visit https://ukmsregister.org.

For the latest information on how people with MS are affected by Covid-19 visit mssociety.org.uk/coronavirus