Ask the Expert

Ask the Expert 2025

Addressing the questions that matter most to people living with multiple sclerosis

About

During Patient Community Day 2025, people living with multiple sclerosis, caregivers, and advocates from around the world shared more than 530 wide-ranging questions about research, treatment, and lived experience. While our panel addressed many of these topics, the volume and depth of questions reflected the community’s ongoing desire for clear, reliable, and up-to-date information.

To continue these conversations, the remaining questions and expert responses have been organised into key topic areas below, including emerging therapies, and broader issues affecting access, equity, and quality of care for people living with MS.

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Q: Are there any medications or treatments currently in development or clinical trials that aim to promote myelin repair or regeneration in people living with MS? In particular, is there any available insight into the progress of trials involving PIPE-307 or Dioprotectome, and when results might be expected?

A: Yes, there are a number of potential therapies that are now being investigated to promote remyelination in people living with MS. At ECTRIMS 2025, the results from a Cambridge Centre for Myelin Repair clinical trial were announced, which looked at the ability of metformin and clemastine to repair myelin. These results were discussed during the Patient Community Day and can be viewed at 18:20 in Session 1. Overall, the trial was a success and has shown that myelin repair is possible in people living with MS. However, the effect seen was minimal and more trials are needed to identify the most promising compounds and the best ways to deliver these therapies.

PIPE-307 and Dioprotectome are two other myelin repair therapies that are at various stages of development. A Phase 2 clinical trial of PIPE-307 is currently underway and results are expected to be announced towards the end of 2025 or early in 2026. Dioprotectome has shown exciting preclinical data, but has not yet begun clinical trials. It is hoped that an initial trial for Dioprotectome will begin in 2026.

Q: What is the latest research update on Tolebrutinib, and how is it expected to be used in clinical practice? Specifically, is it being considered for people with relapsing–remitting MS (RRMS), and will monitoring of PRLs or other biomarkers be required as part of routine care?

A: At ECTRIMS 2024, the results of the HERCULES clinical trial were presented. HERCULES was a trial that was testing the effectiveness of a new drug called tolebrutinib to reduce disease progression in people living with non-relapsing secondary progressive MS (SPMS). Excitingly, the results of this trial were positive, and it was found that tolebrutinib significantly reduced disability progression compared to placebo. An important part to note about this trial is the fact that the participants had non-relapsing SPMS. This suggests that tolebrutinib is not targeting the inflammatory component of the disease, which all existing therapies act against, but rather the neurodegenerative component. This is a critical area of unmet need in MS, so further work will be done now to truly understand exactly how tolebrutinib is working to reduce disease progression in MS. Tolebrutinib is currently being reviewed by regulatory organisations worldwide. The US FDA is expected to provide their decision by the end of December 2025.

It is important to note that the recent clinical trial for tolebrutinib involving people living with RRMS was unsuccessful. However, there are some results that suggest that some benefits may be observed and so more analysis is being conducted and further trials may be conducted in the future to reassess whether this treatment may be useful for people living with RRMS.

Q: Am I a good candidate for BTK’s or CAR-T cells therapies after being on a B-cell depleting therapy?

A: Both of these treatment options are still at the trial stage, especially CAR T-cells which are only in very early stage trials in MS, so it isn’t possible to comment around how they will be used if and when they are approved. As with most medications, if these become approved options, the decisions will need to be made in consultation with a neurologist based on the specific situation of the individual in question.

Q: What new insights have emerged regarding the role of Epstein–Barr virus (EBV) in the development of multiple sclerosis, and how is this shaping current research directions?

A: Over recent years, our understanding of the role Epstein–Barr virus (EBV) plays in MS has grown substantially. Exposure to EBV is now recognised as the strongest environmental risk factor for MS, increasing the likelihood of developing the condition by roughly 32-fold. However, EBV alone is not enough to cause MS, as most people infected with the virus never develop the disease. For this reason, current research is focused on uncovering how and why EBV contributes to MS in some individuals but not others. This includes exploring how the virus may interact with genetic risk factors and whether the immune system, while attempting to target EBV, attacks the myelin sheath as a case of ‘mistaken identity’ (in a process known as molecular mimicry).

Q: Can you tell us more about anti-viral treatment for MS, particularly in light of observations from individuals treated for HIV and growing research into the role of Epstein–Barr virus?

A: With the new information around the role of EBV in MS, there has been interest in seeing whether targeting this virus may be a potential new approach to the treatment of MS. There has been anecdotal evidence suggesting that anti-viral treatments may provide some benefits, based on a few case studies showing people living with MS had improvements after receiving these therapies for HIV. Importantly, these have not been tested in a properly controlled, randomised clinical trial to be able to determine if they are effective. These studies are now underway and we expect results over the coming years to start to answer this question.

Trials are also being undertaken to see whether an immunotherapy approach against EBV may also be an effective treatment approach. While preliminary results have been released that indicate that it may not be successful, full results are needed before any conclusions can be drawn. These results are expected in 2026.

Q: About the need for de-escalation: is it true that disease-modifying therapies (DMDs) worsen your ability to defend yourself against any kind of infection?

A: Most MS medications work by modifying or suppressing parts of the immune system to reduce inflammation and prevent immune cells from attacking myelin. One of the side-effects of this is that the body’s natural defences don’t respond pathogens (e.g. viruses or bacteria) as strongly, which can slightly increase the risk of infections. The extent of this risk varies between medications, depending on how much they alter immune activity. Importantly, for most people, the benefits of reducing MS activity outweigh the generally small increase in infection risk. As this is a known side-effect, it is something that is monitored and steps can be taken to reduce the potential risk of developing infections.

Q: Does having a family history of multiple sclerosis increase an individual’s risk of developing the condition?

A: While MS isn’t a classic genetic disease (i.e. it isn’t directly inherited), there are more than 200 genes that have been identified as MS risk genes. Each of these can slightly elevate the risk of a person developing MS, however, most of them have quite a small effect. Some estimates have suggested that a child has about a 1.5% chance of developing MS if either parent has the disease. However, recent studies using large cohorts of people living with MS around the world indicate that the risk may be even lower than that.

Q: In families where MS or other autoimmune conditions occur across generations, is genetic testing recommended to help identify risk and support earlier monitoring or intervention?

A: As mentioned above, MS is not a classic genetic disease and we know that environmental factors play an important role. For this reason, while genetic testing would give some insights into an individual’s risk, it would not provide any clear indication as to whether that person will actually develop the disease in the future. As always, this is a conversation that people could have with their healthcare professional, who may suggest involving a genetic counsellor.

Q: Are there studies that examine how environmental influences affect the likelihood of developing multiple sclerosis?

A: Yes, a lot of studies have looked to see how different environmental factors impact on the risk of developing MS. Known environmental factors that increase the risk of developing MS include smoking, exposure to Epstein-Barr Virus (EBV) and early-life obesity. A key focus area of MS research now is trying to understand how these environmental factors interact with the genetic risk factors.

Q: Can wearable technologies be used in the future to support the detection of disease activity or early warning signs of relapses in people living with multiple sclerosis?

A: There is a lot of interest in understanding how wearable and digital technology may be able to provide information that is useful for the ongoing management of MS in an individual. Such devices could collect information regarding activity level (e.g. step counts), sleep hygiene, heart rate, body temperature and cognitive performance. Considering the large amounts of data that this would generate, AI could be particularly helpful in terms of analysis to help identify any changes that may indicate disease progression. At this stage, utilising these devices clinically is still at an experimental stage and is not generally part of routine clinical practice. It will be an interesting topic to follow over the coming years, as technology and our understanding of the best and most accurate ways to use it improves.

Q: How can I access recordings of the Patient Community Day sessions if I was unable to attend the full event or would like to watch them again?

A: Full replays of all sessions are available on YouTube and the Patient Community Day website (www.ectrimspatientcommunity.eu). Replays are available in both English and Spanish, however, automated subtitles are available through YouTube for most languages.

Q: Who were the panellists on the lived experience panel, and how can I learn more about their organisations or initiatives?

A: The full list of the people with lived experiences panel involved can be found in our 2025 impact report: https://www.ectrimspatientcommunity.eu/impact-report/lived-experience-panel/

Q: People with primary progressive MS often feels overlooked. Finding the cause and cure for MS also do not seem to always be prioritised. How can we get more research focused on finding a cause and cure and finding treatments for people with progressive MS?

A: All of these are a priority for the MS research community. At ECTRIMS 2025, we had a huge number of presentations across a variety of research topics, including many basic science projects that are helping us try to understand the cause of MS. Having a clear and accurate idea of what leads to the disease is a really important step to be able to potentially develop a cure (or more specific and effective treatments).

Similarly, there is a significant amount of work that is being done to try and improve the lives of people living with progressive MS. While we have had significant success developing treatments for people living with relapsing MS, effective therapies for progressive MS remains a largely unmet need. There were several presentations focused on this topic at ECTRIMS 2025 and the establishment of the International Progressive MS Alliance (https://www.progressivemsalliance.org/), which is composed of many of our Supporting Partners for Patient Community Day, is ensuring that research into this topic is a top priority.

Q: Could multiple sclerosis be considered a mitochondrial disease?

A: No, MS is an autoimmune disease and is not considered to be a mitochondrial disease. However, problems with mitochondrial function is something that is associated with MS (and other neurological conditions, such as Parkinson’s disease and Alzheimer’s disease). There is a lot of research that is currently being conducted to understand what causes the problems with the mitochondria, what the outcomes of these problems are and if they are a possible target for new treatment approaches.

Q: What do we know about the impact of menopause on multiple sclerosis, and is there any evidence that hormone-based therapies, such as progesterone, could be beneficial?

A: There is a lot of interest in understanding the impacts that menopause has on women living with MS, as there is significant evidence showing that sex hormones play a role in the disease. Recently, a large study from Australia found that menopause did not appear to impact on disease progression. However, there is a suggestion that cognitive issues worsen during menopause. Researchers are continuing to try to understand this association better and to determine if interventions, such as hormone replacement therapy, may be beneficial.

Q: With millions worldwide living with MS and many struggling to afford treatment due to high drug costs and limited insurance, what does the future look like for access and affordability of these medications? Can ordinary people realistically expect prices to become more manageable?

A: Healthcare inequality is something that researchers and healthcare professionals around the world have placed a focus on, to ensure that all people living with MS have the best quality of care that they can achieve. This spans achieving early and accurate diagnosis regardless of where someone lives, ensuring true diversity in clinical trial and study participation to better represent the MS community, and addressing the socioeconomic factors that influence health outcomes, including improving access to highly effective therapies despite financial barriers.

In this context, ECTRIMS has proudly endorsed the One Million Minds campaign, led by one of our key Supporting Partners, the European Multiple Sclerosis Platform (EMSP). This important initiative aims to unite one million voices to advocate for equal access to quality MS care, research, and treatments across Europe and beyond. The campaign highlights disparities in healthcare systems, raises awareness among policymakers, and calls for concrete actions to reduce inequalities faced by people living with MS.

By supporting initiatives such as One Million Minds, alongside ongoing research and policy engagement, the MS community is working towards a future where access to care and affordability of treatments are no longer determined by where a person lives or their financial circumstances.

Learn more about the campaign and how to get involved here:
https://emsp.org/get-involved/one-million-minds-campaign/#about