Last year I suggested the idea of a reading group for people with MS to get their heads round the scientific literature. The aim being to try to understand what is happening to us and to help us ask more intelligent questions in our interactions with medical professionals.

We’ve now met 4 times.

The first of these was just a chance to meet each other and agree what we wanted to achieve together. Since this first meeting, we’ve met to look at papers related to:

  • MS and cognition
  • MS and fatigue
  • Smouldering MS and disease progression.

I thought it would be helpful to share the papers we’ve looked at.

MS and cognition

The MS Society has lots of good resources on cognition

Longdon D, et al (2011) Cognition in multiple sclerosis

Kalb R, et al (2018) Recommendations for cognitive screening and management in multiple sclerosis care

Sandroff B, et al (2016) Systematic, Evidence-Based Review of Exercise, Physical Activity, and Physical Fitness Effects on Cognition in Persons with Multiple Sclerosis

MS and fatigue

Matura LA, et al. A Systematic Review of Biological Mechanisms of Fatigue in Chronic Illness

Harrison AM, et al. Which exercise and behavioural interventions show most promise for treating fatigue in multiple sclerosis? A network meta-analysis 

Loy BD, et al. Relationship between perceived fatigue and performance fatigability in people with multiple sclerosis: A systematic review and meta-analysis

This study reviewed the 45 assessment scales used to measure physical fatigue in MS. Sellitto G et al (2021) Outcome measures for physical fatigue in individuals with multiple sclerosis: a systematic review. I had a bit of a twitter rant about the problem that multiple measure for fatigue, cognition and disability can cause, but I’m not sure what the solution is

The MS Trust’s or MS Society’s resources might also be helpful. And finally there are an eclectic set of posts on the Barts MS blog that might be of interest. 

Smouldering MS and disease progression

Absinta M, et al (2020) Mechanisms underlying progression in multiple sclerosis

2. Smouldering MS

Prof Gavin Giovannoni at Barts has talked about smouldering MS, which is his term for progression independent of relapses.  This YouTube presentation gives more details https://www.youtube.com/watch?v=PN_CiZcZp9Y&t=26s. 

This video by Dr Aaron Boster in the States covers similar ground https://www.youtube.com/watch?v=lzmycsBvKBo. 

Absinta M et al (2019) Association of Chronic Active Multiple Sclerosis Lesions With Disability In Vivo. The MS Trust covered this study on smouldering lesions in a one of their research updates

Studies of progression in relation to two drug trials

This paper from 2020 looks at PIRA (progression independent of relapse activity) versus RAW (relapse-associated worsening) using data from two clinical trials of Ocrevus (ocrelizumab).

Kappos L et al (2020) Contribution of Relapse-Independent Progression vs Relapse-Associated Worsening to Overall Confirmed Disability Accumulation in Typical Relapsing Multiple Sclerosis in a Pooled Analysis of 2 Randomized Clinical Trials

This study continues this theme by looking at relapse-independent of progression in people taking Tysabri (natalizumab).

Graf J et al (2021) Relapse-independent multiple sclerosis progression under natalizumab

I’ll try to post an update of what we’re going to look at more regularly from now on.