Patient voice: The label given to my MS disease course matters to me—Commentary

This issue marks the launch of our inaugural Controversies: Patient Voice section, which centres the lived experiences and perspectives of people living with multiple sclerosis (pLwMS). In doing so, we join a growing movement in medical publishing recognising the legitimacy – and necessity – of patient authorship. As many argue, ¹ this is not simply an evolution of participatory research but a potential solution to the long-standing challenges of relevance and inclusivity. It reflects the broader shift towards ‘nothing about us, without us’, and journals play a critical role in enabling and valuing these contributions.

Fittingly, our first patient-authored debate addresses a topic long discussed by clinicians and researchers: do MS course descriptors matter? The two authors offer contrasting views – but converge on a shared discomfort with the current language used to describe MS.

The 1996 MS clinical course descriptors – relapsing-remitting, secondary progressive and primary progressive – long shaped diagnosis, communication, regulatory approvals and treatment decisions. ² The 2013 revisions ³ introduced radiologically isolated and clinically isolated syndromes, as well as a classification of disease type into active or non-active categories, to better align with emerging biological insights and a shift towards biomarker-informed classifications. The 2024 revised McDonald criteria ⁴ herald another new era. The need for dissemination in time is removed, and there is increased emphasis on biomarkers and lesion topography. People may now receive a diagnosis earlier in the disease continuum, blurring the line between ‘disease onset’ and ‘disease course’. Adding to our growing understanding of progression independent of relapse activity (PIRA) and relapse-associated worsening (RAW), ⁵ it’ is clear that the traditional boundaries between RRMS, SPMS and PPMS are dissolving.

These changes intensify the argument that words matter deeply for pLwMS. Course labels shape patient understanding, influence self-perception and can obscure or invalidate lived experience. Someone told their MS is ‘stable’ on MRI may still feel themselves declining – fatigue, cognitive symptoms, subtle gait changes – yet receive no acknowledgement of these symptoms. Similarly, the label ‘secondary progressive’ may come as a shock to someone who never experienced obvious relapses. Such language can foster confusion and fear, especially when pLwMS seek answers from outdated social media or websites.

Although the opposing author states that labels ‘no longer matter’ to them, what they articulate is not indifference, but rather frustration with oversimplification. Their RRMS label feels increasingly irrelevant, failing to capture the gradual, symptom-driven evolution of their MS. Concepts like PIRA better reflect the underlying biology of their disease course. Yet, these terms remain outside everyday clinical communication. Their experience – stable imaging but accumulating invisible symptoms – mirrors that of the proponent author.

What both voices are calling for – either explicitly or implicitly – is a new vocabulary. One that reflects what we now know: that MS is not a triptych of fixed phases but a continuum of overlapping processes – relapse biology, neurodegeneration, repair, inflammation and ageing. They advocate for mechanism-based, patient-informed frameworks that incorporate functional impact, biomarkers and modifiers like age and comorbidities.

In short, MS course descriptors do matter – but not in their current form. If they are to guide care and communication, they must evolve. A more precise, personalised and biologically grounded approach would empower pLwMS to better understand where they are now – and what may lie ahead.