How well do we really understand Smouldering MS?

A new neurology review on ‘smouldering’ MS and disability raises questions on accepted concepts


An exciting and interesting academic review on MS recently appeared in the journal “Therapeutic Advances in Neurological Disorders” earlier this year.  Smouldering multiple sclerosis: the ‘real MS’ was written by a Europe-wide team of 20 highly respected MS experts, mostly Neurologists, with many years of experience in MS research and treatment, radiologists and other experts. The coordinator for this work was Professor Gavin Giovannoni, who many will know from his frequent activity on MS.


The review critically evaluates our current understanding of how damage in the Central Nervous System (CNS) occurs in MS. It argues for a proposal for new concepts to help explain the many anomalies that have come to light between accepted opinions on the underlying mechanisms causing MS-related CNS damage, and their link to developing disability over time.


From accepted thinking to innovative research

The original thinking on the causes of MS-related disability were based largely on the idea that in Relapsing-Remitting MS (RRMS), relapses were the main drivers of changes to bodily function and observed increases in areas of damage in the brain and spine. Three decades of extensive routine use of Disease-Modifying Drugs/Treatments (DMDs DMTs) to suppress relapses in RRMS has benefitted patients. However, examination of the real-life experience of MS has revealed a more complex picture of how MS symptoms evolve over time.


The new review, however, proposes alternative concepts to explain why current interpretations of long-term data on MS-related nerve damage and severity of symptoms do not always provide a full explanation of the lived experience of MS. Using published data from advanced imaging studies, individual MS case studies and observations from recent research, the review proposes new potential interpretations of how CNS damage develops and evolves.


Referred to as “Smouldering MS” the research implies a much more continuous ongoing damage process within the CNS than previously considered. The review puts forward persuasive arguments for re-thinking our present understanding of the nature of MS.   


Research in context 

The publication is an opinion paper - extensive, complex and peppered with words like “might”, “maybe” and “perhaps”, indicating the potential for new concepts to be tested and evaluated. The opinions may be challenged, this is the nature of research. Most importantly, new research avenues will be triggered to clarify exactly how much we really understand the true nature of MS. This may lead to a clearer understanding of what needs to be done to control CNS nerve damage and arrest the progress of MS.  


Whatever the findings indicate in future, it is likely they will impact all aspects of MS management and treatment, be they medical, clinical, therapeutic, and psychological. Watch this space!


Read the full study in Therapeutic Advances in Neurological Disorders here:


Better support and treatment are needed to recognise links between MS and mental health

MS and mental health awareness week 

This #mentalhealthawarenessweek, MS Research has been asking why psychological support and treatment for people with MS is hard to find. Of course, the current NHS staffing crisis means there are simply not enough clinical psychologists and mental health staff working in the NHS. However, there are also other reasons.  

The more obvious physical symptoms affecting most people with MS, making coping with the condition a real burden. Problems with mobility, eyesight, continence etc., are high on any list of difficult MS symptoms. In our experience, fatigue also rates very highly as one of the most difficult symptoms to live with.  


Clear links

The cross-over between long-term management of lifelong conditions and mental health support is very clear. When we rolled out our FACETS course to help individuals manage MS fatigue, we quickly learned that for those who have MS, it is not just the physical and outward signs of their MS that bother them. It is the unseen or unrecognized symptoms, and the lack of help and support to cope with them that make life more difficult.

This led us to consider what other unseen impacts of MS could be addressed. Anxiety, loss of confidence, feeling overwhelmed, anger and depression. At their worst, these can all lead to a need to escape from the impact of MS with drugs, and even suicidal thoughts.

Over many years we have seen incredible resilience but also in extreme cases some very sad solutions, such as suicide or even euthanasia, to the difficulties of life with MS.


A new plan 

With new plans to reform the NHS better support may be on the way. The new plans for the NHS and social care pathways state many hopeful expressions about “joined-up thinking” and “removing barriers” to better treatment.  

And one area of this that has real significance for the MS community is the plan to place equal importance on the physical and mental health aspects of long-term illness. MS Research is also looking for ways to encourage more research into this long-term illness's physical and psychological aspects. We hope that this will lead to more positive solutions in MS care.


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