Call for global effort to advance research on COVID-19 and progressive MS

  • Recent evidence suggests that people living with progressive MS are at risk of more severe COVID-19
  • The latest paper from the International Progressive MS Alliance has identified the need for more research on the relationships between disease-modifying therapies, COVID-19 vaccination, COVID-19 risk and COVID-19 severity in progressive MS
  • It also calls for work to fully gauge the effects of the COVID-19 pandemic on the physical, emotional and social well-being of people with progressive MS

What is progressive MS? 

Over half of people with MS worldwide live with progressive forms of MS, which are characterised by steady progression and accumulating disability, independent of acute inflammation and relapses. These include primary progressive MS (PPMS) which is progressive from the outset, and secondary progressive MS (SPMS) which evolves from relapsing-remitting MS over the course of 10–20 years and is characterised by the gradual worsening of the disease with or without relapses. The International Progressive MS Alliance (Alliance), of which MS Australia is a managing member, is a global organisation dedicated to addressing the unmet needs of people with progressive MS. Their latest paper is a call to action to address specific needs in progressive MS related to the COVID-19 pandemic.   

Why do we need special consideration of COVID-19 in progressive MS?  

People with progressive forms of MS, due to the nature of their disease, tend to have worse disability and poorer health, which could contribute to severity of infection with SARS-CoV-2. Some studies have shown that among people with MS, those who develop more severe COVID-19 tend to be older, live with progressive disease and have a higher degree of disability.  

Very soon after the pandemic began, researchers from many different networks around the world began collecting data on outcomes of SARS-CoV-2 infection for people living with MS. So far, several risk factors for more severe outcomes from SARS-CoV-2 infection have been identified, including older age, higher disability, cardiovascular comorbidities, obesity and possibly the male sex. 

Background to the call to action 

The call to action was initiated by an April 2021 meeting of the Alliance Industry Forum. The Forum is a group of pharmaceutical and biotechnology experts that serve in an advisory role to the Alliance Scientific Steering Committee. The event gathered scientists, healthcare professionals, MS patient advocacy organisation leaders, pharmaceutical and biotechnology experts, and people affected by MS to discuss what has been learned about SARS-CoV-2 infection, the COVID-19 pandemic and progressive MS as well as identify action needed going forward.  

Critical priorities identified for research 

The meeting highlighted three priorities for additional research focus. 

The first priority is to better understand how MS disease-modifying therapies (DMTs) influence the response to COVID-19 vaccines, and COVID-19 risk and severity in people with progressive MS. DMTs can influence the antibody levels achieved in response to COVID-19 vaccination, but these only measure one of the two major protective arms of the immune system that can be activated by vaccination. 

Important practical questions for MS management, such as whether MS therapies affect the duration of the protective effect of COVID-19 vaccines and the optimal timing of vaccine dosing around MS medication dosing, are still under investigation.   

In addition, the authors note, “We need to ensure that the MS community understands that, to date, no association has been shown to exist between COVID-19 vaccination and worsening of MS disease or increased risk of relapses. This fear drives some MS patients away from vaccination, putting them at risk for SARS-CoV-2 infection and subsequently for developing severe forms of infection.”  

The second priority identified was a need for better understanding of the long-term impact of COVID-19 and COVID-19 vaccines on the biology of progressive MS. While a strong immune response against SARS-CoV-2 is needed to fight the infection, aberrant immune responses may also contribute to the severity of COVID-19, such as during COVID-19 pneumonia. How the immune response to COVID-19 might overlap with the immune processes in progressive MS is not well-understood. One example of overlapping immune pathways relevant to MS and COVID-19 is that people who are deficient in the immune pathway called “type 1 interferon” experience more aggressive COVID-19. One of the type 1 interferon molecules, interferon beta, has been used for many years as an anti-inflammatory therapy for MS. Whether COVID-19 or COVID-19 vaccines impact on progressive MS is not yet known.  

The third priority identified was a need for better understanding of the impact of the pandemic on the well-being of people with progressive MS. People with progressive MS experience higher rates of anxiety, depression and cognitive difficulties. These conditions could potentially compromise the ability to adjust to, and cope with, stressful life events such as the pandemic with all its attendant risks and restrictions. 

Further research is needed to understand how to best support the well-being of people with progressive MS in pandemic conditions. One positive offshoot of the pandemic has been the effectiveness of e-health and telemedicine in assessing and managing anxiety and disorders of mood and cognition. While these approaches are being used in people with MS, findings regarding their benefits are yet to come. 

The key scientific priorities and required actions are detailed in the new paper, “Researching COVID-19 in progressive MS requires a globally coordinated, multi-disciplinary and multi-stakeholder approach – perspectives from the International Progressive MS Alliance”, published in Multiple Sclerosis Journal online on 3 May 2022 and publicly available.  

What are the next steps? 

Addressing these issues will require expertise from multiple stakeholders across a variety of disciplines. Professor Robert Fox, Staff Neurologist at the Mellen Center for MS, Cleveland Clinic, and Chair of the Alliance Scientific Steering Committee said, “This paper outlines valuable opportunities for a more coordinated, global approach to understanding the relationship between COVID-19, progressive MS, and their respective treatments.”  

Global collaboration and meaningful engagement with patients can help guide research to address the ongoing questions and challenges associated with COVID-19. These efforts will ensure we are better positioned to manage future transformational events that impact the lives of people with MS worldwide.”

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Call for global effort to advance research on COVID-19 and progressive MS