Living Well with MS podcast producer Gina Beach gives us her top takeaways from the Patient Community Day at ECTRIMS 2024
On the last day of the ECTRIMS (European Committee for Treatment and Research in Multiple Sclerosis) 2024 conference, the third annual hybrid Patient Community Day allowed people living with MS to learn from a roundtable of top neurological experts about the latest progress in research, treatment and care.
Two sessions were chaired by Professor Bruno Stankoff, MD PhD, neurologist, and professor of neurology in Sorbonne-Université, Paris and moderated by Brett Drummond of MS Translate. (Watch the Overcoming MS webinars featuring Brett here and here.)
Session one explored the latest in remyelination, progressive MS, and Epstein-Barr virus (EBV). It also discussed the impact of lifestyle modifications on MS including diet, exercise, and environmental factors.
Session two focused on the McDonald Criteria for diagnosing MS, paediatric MS and MS nursing practices.
Panellists:
Remyelination was highlighted as the next frontier of MS treatment development, and one that might not be so far away, with trials ongoing based on the pre-existing knowledge that the body and brain can repair itself. Decades of biological research have brought us closer to understanding how the brain remyelinates so that new drugs can be developed, with Clemastine already found to be successful in promoting remyelination (Myatich 2023). Other drugs are being studied in small early-stage trials, with results expected to be available in the next few years.
One of the key messages was that early diagnosis and treatment are essential for delaying progression in MS. Increasing functional reserve in the brain and delaying progression are best achieved through exercise, good quality diet, cognitive training, and socialising. Once a patient is already in the progressive phase of the condition, it’s difficult to reverse, though without inflammation, progression slows. In people with MS with progression independent of relapse activity (PIRA or Smoldering MS), the HERCULES phrase 3 trial for the BTK-inhibitor Tolebrutinib found that it delayed progression of disability by 30% (Sanofi press release – paper under publication). However this trial did not see a reduction in brain atrophy and the drug did not have an anti-inflammatory effect.
In terms of risk factors, individual genetic environments have been found to cause the immune system to be more prone to MS. Infection and especially Epstein-Barr virus (EBV) is a risk factor for MS (and for many other autoimmune conditions), and there is a school of thought that an EBV vaccine might help to lessen the incidence of MS, though research is ongoing.
There is lots of evidence that moving and socialising have dramatic impacts on symptoms. Exercise decreases fatigue, pain and depression, while socialising, diet and exercise together have been found to be stronger than medication or exercise alone; supporting the Overcoming MS Program, and the idea that there is power in lifestyle intervention. Early intervention often leads to better results in managing symptoms, and joining an MS registry is an important way to help researchers understand the trajectory of symptoms and medication effectiveness.
In summary, speakers said that those living with MS would benefit from taking control of their disease through diet and exercise, with physical and cognitive rehabilitation coming down largely to exercise. Nearly half of MS patients have reported that they’ve tried to change their diet, and many feel it positively impacts their symptoms, whilst maintaining a healthy weight benefits the disease trajectory. Eating whole foods has been found to be better than taking lots of supplements, and eating fish to be better than taking fish oil (which was found to have no effect on MS patients.)
Sleep and good sleep hygiene is incredibly important for people with MS, as is gut microbiota. MS patients’ microbiome generally has too much pro-inflammatory microorganisms and too few anti-inflammatory ones, this can be improved by taking a lactobacillus probiotic and eating lots of prebiotics and fibre.
Managing comorbidities (the other conditions you might have alongside MS) is very important – avoiding conditions like high cholesterol, obesity, high blood pressure, diabetes positively impacts health span, especially as we age.
Smoking is particularly bad for people with MS, with a large negative impact found on disease progression. Stopping smoking, if you are a smoker, is a really important step in managing your MS.
An important consideration is that clinical trial cohorts don’t always reflect the MS community’s diversity, leading to diagnostic challenges for people from underrepresented populations and social status. For example, most of the people living with MS are over age 55, but most research is geared at working–age people, and clinical trials tend to be designed for younger populations. New trial designs to make them more inclusive are on the horizon.
Panellists:
The McDonald criteria – which are used globally to give clinicians a clear guideline for diagnosis – have been updated, which should lead to an earlier diagnosis, an easier diagnosis, and less misdiagnoses (including ‘false positives’).
An earlier diagnosis is crucial for early management of the disease, and being able to diagnose from MRI changes as per the updated criteria, means patients can be diagnosed with MS before clinical symptoms show, based on biological changes in the brain, optic nerve, and spinal cord.
Lesions in the optic nerve are being looked at as part of the diagnostic process which, given that 20% of MS patients have optic neuritis as their first symptom, should also help lead to earlier diagnosis.
The new diagnostic criteria applies to those with both relapsing and progressive MS.
30,000 people under 18 have been diagnosed with MS so far, a total that is expected to grow as it is likely under-diagnosed.
Teriflunomide (Aubagio) and fingolimod (Gilenya) are now approved to treat children with MS, with researchers looking for biomarkers to help with early diagnosis. Recovery in children is very good with almost 100% recovering fully from relapses. However 40% of paediatric MS patients show symptoms of depression, so it’s important for caregivers to be aware of and monitor this.
MS Nurses, who promote self-management with brain health tools and signpost patients to clinicians and programmes where necessary, have been shown to significantly improve the outcomes of people with MS. The longer the relationship with an MS nurse, the higher satisfaction that patients reported.
With this in mind, it’s important to now define the role of the MS nurse, standardise this across the globe and encourage neurologists to advocate for their inclusion in all MS treatment plans.
This is a landmark moment for Overcoming MS, as it’s the first time that ECTRIMs have mentioned lifestyle change for MS at a main conference speech. The session one speakers’ observations that those living with MS would benefit from taking control of their disease through diet and exercise, with physical and cognitive rehabilitation coming down largely to exercise, backs our message at Overcoming MS, supporting what we are here for, and why we believe it’s so important.
You can watch the full panel discussion here.