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Smouldering MS: Is this the real MS? How and when do we discuss this with our patients?

12 Sep 2023 16:30 - 17:30

Please note that all session and slide content are the views of the Speakers, not the MS Academy. The content of the recording is the speaker’s personal opinion at the time of recording. Due to the everchanging situation, advice given at the time of recording is subject to change
Topics for discussion:

This webinar will see the topic of smouldering MS - one of the hottest topics at this years' ECTRIMS - discussed by an expert panel, all of whom bring a different perspective and experience to the matter.

Agne Straukiene - MS neurologist
Amy Harbour - MS nurse specialist
Jody Barber
- MS physiotherapist
Dominic Shadbolt
- person with MS and founder of the MSGuide

Opening with a brief review of what we mean by 'smouldering MS' from Prof Gavin Giovannoni, our panel will tackle challenging questions such as how to talk about smoulding MS with people living with MS and whether or not it is helpful to tell someone with MS that this is what they are experiencing when we have no disease-modifying therapies to help with this.

The panel will then move towards what can be done to support someone with smouldering MS, reviewing the evidence base for things like therapeutic and lifestyle treatment and infection prevention, before discussing how we can monitor for smouldering MS in clinical practice, and whether policy is needed to support this.

Presentation slides


Numerous studies had shown that people with MS can accrue disability in the absence of relapse, despite taking highly effective disease modifying therapies.

“We have very effective therapies to stop relapses and to stop new lesions forming from inflammatory activity but we do not have effective treatments to tackle this process of progression,” said Professor Gavin Giovannoni, MS neurologist at Barts and The London NHS Trust.

Potential drivers of underlying progression include lifestyle factors, innate immune activation, aging mechanisms, brain atrophy, and systemic infections. Importantly, Prof Giovannoni said, some of these are modifiable.

Knowledge is power

Opening the panel discussion, he asked if healthcare professionals should tell patients about smouldering MS right from the beginning.

Dominic Shadbolt, who was diagnosed with MS in 1994 when he was 25, and has since founded MSGuide, an online peer support and education resource, said: “I would much rather it be laid out, in all the gory detail, upfront, because I cannot make an informed decision without that knowledge.”

Agne Straukiene, consultant neurologist at the Torbay and South Devon NHS Foundation Trust, agreed. Being “transparent and honest” is imperative, but this can be difficult when talking about a complex, fast evolving, science-driven topic such as smouldering MS, she went on.

Using “friendly language” and metaphors, such as campfires to represent relapses and fire embers to represent the smouldering or progressive aspect of MS, can help, she said. “We also have to look at the positives; that there are ways to manage the symptoms, and the role of lifestyle modifications and physical therapies and interventions… we have to keep that communication going and inviting people to come and ask questions or raise concerns.”

Ultimately, patients should decide on the direction of the conversation, and how much information they would like to hear, said Amy Harbour, MS nurse specialist at the Southern Health NHS Foundation Trust.

“It depends on the person, but I always explain that MS is almost like two different diseases: we can treat the relapses with disease modifying therapies (DMTs), but there's always going to be a certain aspect that you can't necessarily treat. However, I then talk about how lifestyle choices can help with brain atrophy, to give them a bit of hope and power.”

Lifestyle advice

Exercise, specifically high-intensity exercise, can be protective against the brain atrophy that underlies smouldering MS. As such, it’s important to explain that to patients in a way they can relate to, said Jody Barber, MS physiotherapist at the Chiltern Multiple Sclerosis Centre.

“Workouts featuring shorter rest intervals and workouts that involve a number of muscles working together, with short rest intervals and to the point of momentary fatigue is the type of exercise that’s shown to elevate your that the protective hormones in our brains.” However, people with MS can be fearful of fatigue, and different people will have different levels of self-efficacy, she added.

Dominic described sleep, diet, and exercise as the “Holy trinity” of MS management, particularly as there is currently no cure. “We, as patients, have a responsibility not to just rely on the drug… but how to motivate people to do that is a separate issue. If you've never actively exercised or paid attention to your diet before, it must be incredibly difficult to suddenly have this thrust upon you along with everything else,” he said.

There’s no one size fits all solution, so Amy recommended helping people to set achievable, measurable, feasible goals that relate to their personal circumstances. “Come up with a joint plan at the end of every clinic and then review it in six months. Look back to see how far they've come; what worked, what didn't work and why,” she said. “It is really important they understand the figures, and the reasoning behind what we are asking them to do, but it has to be a joint decision.”

She went on: “In terms of exercise, we know that it can be hard for some people. What do you do when you can’t get out of bed following a relapse? That’s when we talk about exercise snacking, or taking little bits of exercise. Because the most important message is that everything counts, and even little bits of exercise all add up.”

Infection control

With systemic infections being an potential driver of underlying progression, all speakers said they also advised on infection prevention and the importance of seeking early treatment for infections. That includes getting flu and COVID vaccinations and avoiding periodontal disease, said Gavin.

“We need to keep educating people and explaining why it is so important to rule out infections, or at least to diminish them as much as possible,” added Agne.

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