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Moving Research Forward to Reduce Symptoms Experienced by People with Progressive MS

March 30, 2021

-- A call to action from the International Progressive MS Alliance
 
For many of the worst symptoms that may be experienced by individuals living with progressive forms of multiple sclerosis, there are insufficient treatment approaches that can relieve them and improve quality of life. To jump start research to address these gaps, a working group of researchers, representatives from industry, and people affected by progressive MS was convened by the International Progressive MS Alliance to highlight and focus research priorities to address key symptoms: fatigue, impairment of mobility and upper limb function, pain, and cognitive impairment.
 
The working group has published a paper outlining their recommendations as a first step toward driving research to develop much-needed solutions for these symptoms.
  • The authors found that minimal research funding is currently directed toward these symptoms, and call out the need for increased research investments to identify solutions.
  • Key knowledge gaps and priority research questions were outlined for the four symptoms, including the need for better ways to measure symptom severity, how to best treat them, and how to sustain the benefits of treatments to provide relief and improve function for people living with progressive MS.
  • The paper was published in Multiple Sclerosis Journal on March 15, 2021.
“This paper is an important next step toward making daily life better for people with progressive MS,” stated Dr. Robert Fox, Vice Chair of the Scientific Steering Committee of the International Progressive MS Alliance. “Effective strategies that relieve symptoms and restore function will be easier to achieve if we are asking the right questions.”
 
Background: The International Progressive MS Alliance is a global effort to accelerate the development of effective treatments for people with progressive forms of MS to improve quality of life worldwide. Ensuring people with progressive MS can live fulfilling lives requires effectively addressing the multitude of symptoms that disrupt daily life. The Alliance is working to establish a global research strategy that can lead to proven methods for rehabilitation and symptom management to improve the lives of people living with progressive MS.
 
In May 2018, the Alliance convened a Scientific Congress that focused on symptom management and rehabilitation in progressive MS, and included scientists, industry members, and people affected by MS. A working group was established to identify knowledge gaps in four symptoms that people with progressive MS have said are important to them: fatigue, impairment of mobility and upper limb function, pain, and cognitive impairment.
 

KEY FINDINGS 

More Funding is Needed: The authors examined the research portfolios of the Alliance, as well as its five managing members (the MS societies of Australia, Canada, Italy, United Kingdom, and United States). In 2017, these organizations funded $228.7 million in research grants; of these, 1.3% was spent on studies of fatigue or pain, 3% on mobility and/or upper extremity dysfunction, and 5% on cognitive dysfunction.

“One thing is clear, increased financial investment from the Alliance and other financers into studies of symptom management are needed if progress is to be made,” concluded the authors.
 
Knowledge Gaps: The authors identified key knowledge gaps and research priorities in each symptom area.
 

Fatigue

  • How do we objectively measure fatigue?
  • Which interventions or combinations of approaches can significantly reduce fatigue in people with progressive MS?
  • Are there ways to determine which interventions will work best in which individuals?

Mobility

  • Can rehabilitation interventions that address mobility protect the brain, or improve brain function?
  • Can the benefits of mobility treatments be enhanced by altering the intensity, frequency, or duration of treatment?
  • What are ways to motivate people to engage in, and adhere to, rehabilitation programs in the long term, so that benefits are sustained?

Pain

  • How can we identify and understand specific types of pain experienced by people with progressive MS, and what biomarkers or psychosocial factors might predict people’s responses to treatment?
  • Which combinations of pharmacologic and rehabilitation interventions are most effective in treating pain in people with progressive MS, and how can we make effective treatments a part of the routine case of people with progressive MS?

 Cognitive dysfunction (Thinking and Memory)

  • Do cognitive interventions that work for people with relapsing MS also work for people with progressive disease?
  • Which interventions to improve cognition can have impact on daily life?
  • Does early treatment of cognitive problems improve outcomes and help preserve cognitive function in people with more advanced progressive MS?

The authors point out that some progress is being made in awareness in the community of the importance of exercise and rehabilitation strategies, as well as the growing knowledge that successful treatment of symptoms can in some cases produce beneficial changes to the brain and to the underlying biology of MS. Investments in high-quality research to answer the identified research questions and gaps is crucial to finding ways to reverse symptoms and restore function in people with progressive MS.
 
Learn more about current approaches for managing these MS symptoms: walking and mobilityfatiguepain, and  thinking and memory
 
“Prioritizing progressive MS rehabilitation research: A call from the International Progressive MS Alliance” by Kathleen M. Zackowski, Jennifer Freeman, Giampaolo Brichetto, Diego Centonze, Ulrik Dalgas, John DeLuca, Dawn Ehde, Sara Elgott, Vanessa Fanning, Peter Feys, Marcia Finlayson, Stefan M. Gold, Matilde Inglese, Ruth Ann Marrie, Michelle Ploughman, Christine N. Sang, Jaume Sastre-Garriga, Caroline Sincock, Jonathan Strum, Johan van Beek and Anthony Feinstein, was published in The MS Journal (Published online March 15, 2021).
 

About Multiple Sclerosis

Multiple sclerosis is an unpredictable, often disabling disease of the central nervous system. There is currently no cure for MS. Symptoms vary from person to person and range from numbness and tingling, to mobility challenges, blindness and paralysis. An estimated 1 million people live with MS in the United States. Most people are diagnosed between the ages of 20 and 50, and it affects women three times more than men.

About the National Multiple Sclerosis Society

The National MS Society, founded in 1946, funds cutting-edge research, drives change through advocacy, and provides programs and services to help people affected by MS live their best lives. Connect to learn more and get involved: nationalMSsociety.org, Facebook, Twitter, Instagram, YouTube or 1-800-344-4867.

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