Prioritising Progressive MS research: A call to action

  • MS Research Australia is a managing member of the International Progressive MS Alliance, which is dedicated to developing effective methods to treat, and ultimately end progressive MS.
  • The International Progressive MS Alliance planned a study to identify and highlight the symptoms that are the most important to people with progressive MS. These four symptoms included fatigue, mobility and hand/arm function, pain and cognition (memory and thinking).
  • Additionally, the study highlighted several other factors, which can also have a significant impact on these four key symptoms and should also be considered when planning future research. These factors include depression, resilience, the presence of co-morbidities (other illnesses) and psychosocial factors such as social support.

There have been significant developments in rehabilitation strategies for people with relapsing remitting MS, however, there has not been the same advancement for people living with progressive forms of MS. A recent paper published in the Multiple Sclerosis Journal from the International Progressive MS Alliance highlights the symptoms of importance for people with progressive MS, and it encourages high-quality studies to focus on symptom management and rehabilitation in these key areas.

The International Progressive MS Alliance is made up of international research experts, global MS organisations (like ourselves, MS Research Australia), representatives from industry and people affected by progressive MS. The Alliance has prioritised, and is actively exploring avenues for rehabilitation, regeneration, recovery, prevention and wellness in people with progressive forms of MS.

Rehabilitation aims to improve both physical and mental function and quality of life using various approaches. One of the approaches involves restoring and maintaining function, through interventions such as intensive, targeted physiotherapy, occupational therapy and sustaining wellness. By identifying the key symptoms contributing to a reduced quality of life in people living with progressive MS, the Alliance hopes that this will stimulate new research focusing on these symptoms and their rehabilitation.

Key symptoms important to people with progressive MS

Based on information provided directly by the MS community, the Alliance was able to identify four key symptoms of particular interest: fatigue, mobility and hand/arm problems, pain and cognition (memory and thinking).

Fatigue is one of the most common and debilitating symptoms of MS, and one of the hardest symptoms to effectively treat. One reason why fatigue is so hard to treat is because we still lack a good understanding of the underlying mechanisms which cause fatigue. Although fatigue can be experienced in varying degrees throughout the disease course, fatigue can often hit hardest in the progressive phases of MS.

Impaired mobility is also a prominent concern, with greater walking impairment experienced in progressive forms of the disease and an increase in the likelihood of falls. Impairment to the hands and arms is also more common in progressive forms of MS and tends to worsen over time. As mobility reduces, there is more dependence on the hands and arms to use aides such as walking sticks, walkers and wheelchairs, and as such dependence on the upper limbs increases. However, there has been very little research to address how impairments to the hands and arms develop or the best methods to rehabilitate people living with progressive forms of MS in order to help them maintain independence.

Chronic pain is also one of the most disabling and persistent symptoms of MS. This includes numbness, burning, tingling and muscle spasms. The nature of chronic pain is poorly understood in progressive MS, but we know it leads to sleep disruption, fatigue, depression and physical inactivity, further exacerbating the original symptoms.

Finally, cognitive impairment, involving processing speed of information, learning and memory can lead to reduced quality of life and social withdrawal. There is evidence that rehabilitation may reverse some cognitive deficits and significantly help people with MS in general, however very little research exists that specifically addresses cognition, rehabilitation and progressive forms of MS.

Other factors impacting progressive MS

There are several important factors which may influence the management of these key symptoms and rehabilitation in progressive MS, which have also been highlighted by the Alliance as areas to be considered in future research. These factors represent key areas of “investment” to improve quality of life for those living with progressive MS.

Depression can also affect cognition, as well as having a detrimental effect on participation in rehabilitation programs and interest in health and well-being in general.

Resilience, an ability to “bounce back”, can also be an important consideration when dealing with chronic pain and fatigue.

Living with other illnesses, especially with aging, is also common in MS and the potential impact of these co-morbidities on MS must also be considered in research studies.

Of course, psychosocial factors can have a significant impact on quality of life, with appropriate and adequate access to social support reducing feelings of stress and depression.

Where to now?

The take home message from the Alliance is that it is essential that future research is directed towards these areas of unmet needs in order to facilitate treatment interventions for these challenging symptoms.

In recent years, MS Research Australia has funded a number of projects, aimed at addressing the significant knowledge gaps in these particular symptom areas. In 2021, this includes research from five groups, the first is led by Dr Lisa Grech on depression. The other studies include Dr Phu Hoang on mobility of lower limbs, Dr Yvonne Learmonth on resilience, Dr Marzena Pedrini on exercise and mobility and Dr Charles Malpas on cognition.

We look forward to communicating the outcomes of the projects to the MS community and we will continue to prioritise progressive MS rehabilitation research.


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Prioritising Progressive MS research: A call to action