My prevention hat

M

About three years ago I started wearing another hat; a preventive medicine hat.

We started the Preventive Neurology Unit within our medical school focusing on MS, Parkison’s Disease and all-cause dementia. The unit is growing rapidly and gaining momentum. It was with great pride that I was able to attend and speak at first symposium. I have uploaded my slides for anyone who wants to download them for personal use. 

It is clear that we have an obligation to the next generation of pwMS. The study below shows that young people with MS take a massive cognitive hit. The study shows that at a presentation about a quarter of young people with MS have cognitive impairment at baseline and ~15% had a measurable decline over the next 2 years. In a world where our self-worth is largely defined by our cognition, these figures are scary. The observation that MS is a dementing disease is not new and goes back many decades. 

The willingness of the MS community to accept this is worrying; they say calling MS a dementing disease is stigmatising. Yes and no. Yes, if you want to put your head in the sand and no if you want the MS community to do something about it. It is clear that the dementia is preventable; i.e. the less brain damage that you allow to accumulate the less cognitively impaired the pwMS will become. This is the message behind our treat-early treat-effectively campaign and why we need to flip the pyramid. Access to the most effective treatments early on is the only way to really prevent end-organ damage. 

More importantly, is the observation that MS is preventable. We estimate that by tackling childhood and adolescent obesity and smoking may reduce the incidence of my MS by ~25%. Vitamin D supplementation may reduce the incidence by a further 40%. Preventing EBV infection with a vaccine strategy may prevent the majority of people developing MS. May be admitting how bad MS is at a personal and population-level will get funders to put more money and resources into prevention. 

I think we should call a spade a spade and forget the rose-tinted world most people like to live in. We need to take MS prevention seriously; we owe it the next generation of people who are destined to develop MS. Wouldn’t it be nice if they didn’t get MS? 

Wallach et al. Cognitive processing speed in pediatric-onset multiple sclerosis: Baseline characteristics of impairment and prediction of decline. Mult Scler. 2019 Nov 28:1352458519891984.

BACKGROUND: Cognitive impairment occurs in approximately one-third of pediatric-onset multiple sclerosis (POMS) patients. The Symbol Digit Modalities Test (SDMT), a widely used cognitive screen in adults, has yet to be incorporated early into the standard care of POMS.

OBJECTIVE: To screen for cognitive impairment early in the course of POMS and analyze predictive factors.

METHODS: Of the 955 POMS or clinically isolated syndrome (CIS) patients prospectively assessed from March 2014 to July 2018, 500 POMS and 116 CIS patients met inclusion criteria (disease onset before the age of 18, one or more SDMTs, and 8 years or older at the time of testing). Those with relapse were analyzed separately from those who were relapse-free.

RESULTS: At initial assessment, the mean (interquartile range (IQR)) age at symptom onset was 13.5 years (12.0, 15.9) and the mean (±SD) disease duration was 3.0 ± 2.9 years. Impaired processing speed occurred in 23.4% of POMS and in 16.4% of CIS. On serial testing (n = 383, mean follow-up: 1.8 years), 14.1% had clinically meaningful decline predicted by older age of multiple sclerosis (MS) onset and male gender. Disease relapse or steroid use led to transient worsening on the SDMT.

CONCLUSION: Early in the disease, some POMS and CIS patients are at risk for cognitive impairment and subsequent decline.

CoI: multiple

About the author

Prof G

Professor of Neurology, Barts & The London. MS & Preventive Neurology thinker, blogger, runner, vegetable gardener, husband, father, cook and wine & food lover.

4 comments

  • Dear Prof G,

    “Preventing EBV infection with a vaccine strategy may prevent the majority of people developing MS.” I’ve lost count of how many times you’ve said this over the years, but nothing ever materialises. If you’re not going to do such a study, why keep mentioning it? Are we anywhere to doing such a study?

    “Access to the most effective treatments early on is the only way to really prevent end-organ damage.” What’s happened to your view that all highly effective DMTs do are to convert relapsing disease to PPMS? I thought you were saying that relapses and focal inflammation were not the real MS, so I imagine that anti-relapse drugs will have no impact on the real MS (smouldering MS which drives progression)? Apologies, if these questions appear somewhat rude, I’ve been left somewhat confused with the post about smouldering MS.

    Enjoy the rest of Sunday. Thanks to Alemtuzumab (12 years ago) I’ve taken the dog out for a walk in the woods and been working in the garden for an hour. The benefits this treatment has given me, is why I’ve been left confused by your re ent views about relapses and focal inflammation not being MS.

  • Yes yes yes. Love this post. I’ve done all I can to tach my young adult children, and when they were children, about the value of self care. Get out doors in nature, eat as well as you can. Sometimes they fall through the gaps but they get back up again. Personally, I’ve never been obese, or slightly over weight. I weigh just 7 lbs more at 58 than I did at 21. I was an exercise junkie and lived for the out doors. Even as a child come rain or shine I could not bare 4 walls. So if your theory is right it must have been EBV. I have cognitive struggles it terrifies me more than the legs, bowel and hand issue.

  • Don’t you think that the unpopularity of using the term dementia in the context of MS is because the word is inextricably equated with alzheimer’s? The assumption then is that MS cognitive impairment equals TOTALLY losing capacity to function mentally. Maybe it can mean that (?) but it surely also covers so much more….

  • Thank you for this post. It is so important that we see MS for what it is. A disease of the CNS and Brain. So we must do all that we can to protect what we have, live a life that supports our brain and try and obtain the most useful medications from our service providers.

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