Responding to the data: new global COVID-19 advice for people with MS

Data-driven advice

The largest international conference for MS research took place virtually in September – MSVirtual2020. Shortly afterwards, MSIF reconvened a global group of leading MS neurologists to review and update the global COVID-19 advice for people with MS. Results from several national studies and the COVID-19 and MS Global Data Sharing Initiative were presented at the conference and this data, along with existing research publications on MS and COVID-19, has influenced our recommendations.

See the updated global advice.

‘The global COVID-19 pandemic has necessitated a heightened level collaboration across the MS movement. I am proud to see how the global community has come together to collect high quality data and to generate timely, practical and evidence-based advice.’

Brenda Banwell, Chair of MSIF’s International Medical and Scientific Board

The updated advice reflects several important changes in our understanding of how people with MS are faring with COVID-19. Simply having MS does not seem to put people at an increased risk of either contracting COVID-19 or of developing a more severe case. As we approach month nine of the global pandemic with no signs of it abating in the short-term, this is very important information. People with MS need to balance protecting themselves from the risk of the virus with activities that help them maintain good health and well-being.

Risk factors

However, the latest evidence shows that certain groups of people with MS are at a greater risk of experiencing a more severe case of COVID-19. Some of the risk factors identified mirror what has been described for the general population, for example being older and having other health concerns such as obesity, diabetes and heart or lung conditions. But some of these higher risk groups are specific to MS, for example those with progressive MS. The full list of people with MS who may be at an increased risk of severe COVID-19 is included in the updated global advice. It provides recommendations on the steps that people with MS should take to reduce their risk of getting the coronavirus, particularly as many countries are beginning to experience a second wave of infection.

A critical finding from the COVID-19 and MS Global Data Sharing Initiative is that one class of disease modifying therapy in use for MS is associated with developing a more severe case of COVID-19. The updated statement provides advice for people with MS and their clinicians to consider when thinking about starting or changing therapies during the COVID-19 pandemic. It is important people with MS do not stop any treatment without talking to their doctor. The complex balance of risks and benefits of taking any MS treatment should be discussed, taking into account individual circumstances.

‘In some countries this advice is the only thing clinicians have to inform their discussions with MS patients about their care during the pandemic. It is important that it reflects the latest evidence we have as a global community.’

Professor Bassem Yamout, President of MENACTRIMS and executive committee member of MSIF’s International Medical and Scientific Board

Collaborative global effort to collect data

Data on almost 9,000 people with MS from 82 countries has been collected through the COVID-19 and MS Global Data Sharing Initiative so far. This tremendous effort has involved the collaboration and support of so many people and organisations across the global MS movement. MSIF and our partners at the MS Data Alliance give huge thanks to every person who has contributed to the initiative in some way, either by personally sharing your own data, by spreading the word through your networks, by coming on board as a data partner or by providing resources and advice. The ambition was to find answers rapidly to inform MS care during the pandemic and this has been realised.

‘As a data scientist it is so rewarding to see how the data we have collected from clinicians and people with MS across the world is informing the latest advice we can give to patients. Data can and will save lives!’

Professor Liesbet Peeters, Chair of the MS Data Alliance

The updated global advice is currently available in English but translations into other languages are underway and will appear on our website when they are available. If you are an MS organisation and would like to translate the advice, please contact us.