Last updated: 23 June 2020
COVID-19 is a new illness that can affect your lungs, airways and organs. It is caused by a novel coronavirus that was first detected in people in China in December 2019 and has since spread to other parts of the world.
What does COVID-19 mean for people living with MS?
There is currently limited evidence on how COVID-19 affects people with multiple sclerosis (MS). The advice below was developed by MS neurologists and research experts from MSIF’s member organisations. It is based on expert opinion and preliminary data that is still being analysed, so should be taken with caution. This advice will be reviewed and updated as further evidence about COVID-19 becomes available.
We urge people with MS and healthcare professionals to take part in the COVID-19 and MS global data sharing initiative to help find answers faster. Find out more here.
Click here to download the full statement of the MS International Federation (MSIF) as a PDF, including the list of consulted individuals and organisations, and click here to download a version of the statement with highlighted indicating what has been updated.
Advice for people with MS
People with underlying lung and heart conditions and those aged over 60 years are more likely to experience complications and become severely ill with the COVID-19 virus. This group will include many people living with MS, especially those with additional health complications and mobility issues.
Current evidence suggests that simply having MS does not increase the risk of dying from COVID-19. However, the possible long term consequences of having MS may make people more susceptible to having a severe case of COVID-19. The risk of having to go to hospital for COVID-19 rises with age, progressive MS and higher levels of disability.
All people with MS are advised to follow guidelines for reducing the risk of infection with COVID-19. The World Health Organization recommendations include:
- Wash your hands frequently with soap and water or an alcohol-based hand rub
- Avoid touching your eyes, nose and mouth unless your hands are clean
- Try to practice social distancing by keeping at least 1 metre distance between yourself and others, particularly those who are coughing and sneezing
- Avoid going to crowded places
- When coughing and sneezing, cover your mouth and nose with a flexed elbow or tissue
- Practise food safety by using different chopping boards for raw meat and cooked foods and wash your hands between handling them.
In addition, we recommend that people with MS should:
- Wear a face mask in public and ensure that you are using it correctly by following these instructions
- Avoid public gatherings and crowds
- Avoid using public transport where possible
- Where possible, use alternatives to face-to-face routine medical appointments (for example, telephone appointments).
Certain groups of people with MS may be at an increased risk of becoming severely ill or dying with COVID-19. The following groups should take extra care to minimise their exposure to the virus:
- People with progressive MS
- People with MS over the age of 60
- People with higher levels of disability (for example, an EDSS score of 6 or above)
- People with diseases of the heart or lungs
Caregivers and family members who live with, or regularly visit, a person with MS in one of these groups should also follow these recommendations to reduce the chance of bringing COVID-19 infection into the home.
National lockdown measures in place in many parts of the world might be relaxed in the coming weeks and months. Until our understanding of the coronavirus improves, people with MS in these higher risk groups and their caregivers should continue to follow the advice above to reduce their risk of contracting COVID-19.
We also recommend that you check with your local MS organisation who might have developed their own recommendations for people with MS in your country with the help of their medical advisory board: Our members
Advice regarding disease-modifying therapies for MS
Many disease modifying therapies (DMTs) for MS work by suppressing or modifying the immune system. Some MS medications might increase the likelihood of developing complications from a COVID-19 infection but this risk needs to be balanced with the risks of stopping or delaying treatment. We recommend that:
- People with MS currently taking DMTs continue with their treatment.
- People who develop symptoms of COVID-19 or test positive for the infection discuss their MS therapies with their MS care provider or another health care professional who is familiar with their care.
- Before starting on any new DMT, people with MS discuss with their healthcare professional which therapy is the best choice for their individual disease course and disease activity in light of COVID-19 risk in the region. The following information should be considered during decision-making:
- Interferons and glatiramer acetate are unlikely to impact negatively on COVID-19 severity. There is some preliminary evidence that interferons may reduce the need for hospitalisation due to COVID-19.
- The limited evidence available suggests that people with MS taking dimethyl fumarate, teriflunomide, fingolimod and siponimod do not have an increased risk of more severe COVID-19 symptoms or death.
- Therapies that target CD20 – ocrelizumab and rituximab – may be linked to an increased chance of being admitted to hospital or requiring intensive care treatment due to COVID-19. This preliminary finding requires further investigation.
- More data on the use of natalizumab, alemtuzumab and cladribine during the COVID-19 pandemic are required to make any assessment of their safety.
- People with MS who are currently taking ocrelizumab, rituximab, ofatumumab or ublituximab and are living in a community with a COVID-19 outbreak should be extra vigilant and may want to consider self-isolation to reduce their risk of infection.
- People with MS who are currently taking alemtuzumab or cladribine and are living in a community with a COVID-19 outbreak should discuss their current lymphocyte counts with their healthcare professional. If their counts are considered to be low they should isolate as much as possible to reduce their risk.
Recommendations on delaying second or further doses of alemtuzumab, cladribine, ocrelizumab and rituximab due to the COVID-19 outbreak differ between countries. People who take these medications and are due for the next dose should consult their healthcare professional about the risks and benefits of postponing treatment.
Advice regarding aHSCT
Autologous Haematopoietic Stem Cell Treatment (aHSCT) includes intensive chemotherapy treatment. This severely weakens the immune system for a period of time. People who have recently undergone treatment should extend the period they remain in isolation during the COVID-19 outbreak. People who are due to undergo treatment should consider postponing the procedure in consultation with their healthcare professional.
Seeking medical advice for relapses and other health concerns
People with MS should still seek medical advice if they experience changes in their health that may suggest a relapse or another underlying issue such as an infection. This can be done using alternatives to in-person clinic visits (such as telephone or video consultations) if the option is available. In many cases, it is possible to manage relapses at home.
The use of steroids for treating relapses should be carefully considered and only used for serious relapses. Where possible, the decision should be made by a neurologist experienced in the treatment of MS. People who receive steroid treatment for a relapse should be extra vigilant and may want to consider self-isolation for an appropriate amount of time to reduce their risk from COVID-19.
People with MS should continue to participate in rehabilitation activities and stay active as much as possible during the pandemic. This can be done through remote sessions where available or in clinics as long as facilities are taking safety precautions to limit the spread of COVID-19. People with concerns about their mental health should seek advice from their healthcare professional.
Advice for children or pregnant women with MS
At this time there is no specific advice for women with MS who are pregnant or for children with MS. They should follow the general advice above.
There is no specific advice for children with MS; they should follow the advice above for people with MS.
It is important to avoid contact with anyone who may have been living or traveling in an area where COVID-19 has been circulating. Get the latest updates on where there have been reported cases of COVID-19 from the World Health Organization here.
You can also find out the answers to some commonly asked questions about COVID-19 on the World Health Organization’s website.
Find out more about COVID-19 in the short informational video below, from the World Health Organization.
Global Data Sharing Initiative
As the COVID-19 pandemic unfolds across the globe, the demand for data on the impact of the novel coronavirus on people with Multiple Sclerosis (MS) grows rapidly. This information is crucial for people with MS and clinicians to make evidence-based decisions on how to manage their condition during the pandemic or in case of a COVID-19 infection.
The MS Data Alliance (MSDA) and the Multiple Sclerosis International Federation (MSIF) have teamed up to set up the Global Data Sharing Initiative to achieve insights on the effect of COVID-19 in people with MS as fast as possible, with the intent to steer decision-making during the pandemic. The goal of this initiative is to achieve insights on the effect of COVID-19 in people with MS as soon as possible.
We would like to invite to join this Global Data Sharing Initiative. By collecting and contributing data you will help us find answers faster and may save lives:
Efforts are already underway in a number of countries, with several EMSP members and neurologists already collecting data on COVID-19 in people with MS. Many existing MS registries are developing COVID-19 protocols to gather information from clinicians or people with MS or both. The global data-sharing initiative will enable these independent efforts to combine data in a central global platform. By looking across COVID-19 cases from many countries, we will be able to find answers faster, which will help save lives.
Response from the European Union
Working in close cooperation with the World Health Organization (WHO) and EU Member States, the European Union is stepping up coordinated efforts to contain the virus and counter the economic fallout, both inside and outside our borders.
The European Commission has also launched an advisory panel on COVID-19 composed of epidemiologists and virologists from different Member States to formulate EU guidelines on science-based and coordinated risk management measures. In order to support urgently needed research, the EU will allocate €140 million of public and private funding for promising research projects on vaccines, diagnosis and treatment.
All these efforts are coordinated through the Coronavirus Response team launched on 2 March, which is composed of five commissioners: Janez Lenarčič, who is in charge of crisis management, Stella Kyriakides, in charge of health issues, Ylva Johansson, for border-related issues, Adina Vălean, in charge of mobility, and Paolo Gentiloni, for macroeconomic aspects.
EPF calls for treatment and patients’ access to timely and safe treatment
The European Patient’s Forum (EPF) has also recently published its statement regarding the situation, where they called for Member States to put in place effective strategies for protecting those who are most vulnerable. “In particular, countries should give all possible support to their hospitals and healthcare staff. The situation in Italy shows that patients’ lives are endangered when hospitals are overwhelmed. In addition to COVID-19, some patients with chronic conditions, for example cancer and other life-threatening diseases, as well as acute patients, will still need urgent medical care.”
EPF also called on the European Commission to take rapid action in concert and in solidarity to ensure the continuing supply of vital medicines, protective gear and equipment such as respiratory machines where they are needed. They recommend authorities to work with their country’s patient organisations to ensure effective flow of information and to answer their concerns. For more information about EPF’s position please click here.
COVID-19 Resource Point for patients
To ensure that everyone is kept abreast of the most relevant and reliable information regarding the COVID-19 pandemic, EPF reached out to Prof. Jean-Michel Dogné, Head of the Department of Pharmacy at the University of Namur and expert at the European Medicines Agency (EMA) for advice.
Based on his recommendations, as well as input from the organisation’s members, EPF has developed a frequently updated resource point to share credible figures, research articles and reports on COVID-19 and its effects on the patient and medical community.
EMSP Annual Conference 2020
Due to the recent development of the COVID-19 outbreak, it is with great sadness that the EMSP conference committee decided to postpone its annual event to the 20th and 21st November 2020. As always, our main criteria and interest lie on the safety and protection of our community members.
Mark the new dates in your calendars and stay tuned to receive the update about when the registrations will be re-opened.
We thank you for your understanding!