A – Advances in MS

The European Committee for Treatment in Multiple Sclerosis (ECTRIMS) is an independent not-for-profit organisation, whose annual conference is the largest international conference dedicated to research and advancements in MS. While predominately a clinical and scientific conference, it has been great to see a move towards including workshops and sessions focusing on areas such as MS nursing, rehabilitation, pregnancy and occupational therapy. 

I was fortunate to attend my second ECTRIMS conference back in September 2024 and was privileged to be a speaker on one of the guest panels for their inaugural patient community day. It was great to see ECTRIMS acknowledge the importance of the individual living with MS and their right to access medical and scientific information and updates from the conference in a manner that is relevant and accessible for them. What relevance do clinical trials, research papers and drug advancements hold if the people who need them are not involved, are not aware and cannot access this information in order to advocate for better treatment and care? 

I struggle at ECTRIMS; I come as a healthcare professional and also as a person living with MS and often the two will collide. I get excited hearing about the new advancements in drug therapies and the advancements in testing for a more rapid diagnosis. Yet, at the same time, I struggle with knowing this information, but not seeing it being implemented across healthcare environments and not being relayed to the people who need to know it most; those living with MS. 

I get to connect with and hear from people at the top of their medical or scientific field who are making significant waves in the world of MS. Yet the healthcare professionals who make a difference in our lives, who are interacting with us on a daily basis - such as MS nurses, OTs, Physios etc - are not getting a slot on the main stage. They are ushered to a corner of a conference floor for their workshops. 

So to try and combat this internal struggle that arises after ECTRIMS, I wanted to share my key take-away points from this conference. I’ve combined both elements of Ciara - the nurse who always wants to know more, and the human being living with MS who sometimes wants to know a little bit less!

1. Copenhagen was the location of the conference in 2024. Beautiful city, but unbelievably expensive! €17 for a glass of Pinot – that was my one and only!
2. The main focus for ECTRIMS 2024 was around the revisions and updates to the McDonald Criteria. Think Oscars buzz within the world of MS. Leading neurologists and scientists were predicting what updates were likely to be made to the McDonald Criteria months ahead of the conference. The McDonald Criteria is a tool used by neurologists to aid in their diagnoses of MS. You might recall hearing your neurologist refer to “dissemination in time and space”, where they look for lesions in different areas, arising at different times, in which to make a definite diagnosis of MS. This often results in a drawnout process in diagnosing MS, where people are initially diagnosed with clinically isolated syndrome until another relapse occurs or new lesions appear which correlate with this dissemination in time and space. The new updates now remove this requirement for evidence of dissemination in time, meaning that a diagnosis of MS could be made right away, resulting in earlier treatment and better patient outcomes. 
3. Introduction of new biomarkers in aiding diagnosis of MS. Our bodies are incredible – they let us know when we are sick and when something is just not right. Scientists are now beginning to discover that our bodies can tell us in other ways if we have MS or if there is evidence of progression. Through blood samples, samples of our spinal fluid, through saliva, tears and hair follicles, scientists are developing biomarkers which will aid in diagnosing MS through means other than just MRI scans and lumbar punctures. 
4. Unfortunately at such conferences, there isn’t always success and researchers noted that the drug Simvastatin showed no benefit in disability progression for people living with secondary progressive MS (SPMS). While disappointing, it paves the way now for researchers to focus on other treatments, to learn from the failures of one drug and where success may lie with others.
5. One of the key take-home messages for me was the question posed by healthcare professionals and researchers from the Rehabilitation in Multiple Sclerosis (RIMS) Organisation: when is a good time to start rehabilitation in MS? Interestingly, it’s from the moment of diagnosis. Exercise, health and wellbeing need to go hand in hand with acute treatment. A diagnosis should not solely focus on medical intervention, but what additional rehabilitation can be done to support us? This is where the importance of diet, exercise and wellbeing come into play and the role of healthcare professionals in supporting someone living with MS. Rehabilitation is key throughout the journey of living with MS.  
6. There seems to be a misconception that women with MS are naturally a high-risk pregnancy and a caesarean section is their only option. This is not accurate and causes unnecessary worry for women staring a family. MS alone does not automatically place you in a high-risk category and a caesarean section is not the only option. Women living with MS who are wheelchair users have had normal vaginal deliveries. Another misconception is that women with MS will naturally have bigger babies – also not true. 
7. 85% of people with MS want to discuss sexual health with their neurologist, but only 15% of neurologists are willing to discuss it. Some disease modifying therapies (DMTs) are linked to sexual dysfunction. If sexual health is not discussed, how can we assess these medications for adverse effects or provide alternatives or further supports? Recognition of this issue is just the starting point – sexual health requires a collaborative approach to opening the floor to discussion between the individual and the healthcare professional. We need to be the ones to start this discussion. Sexual health is just as important as physical, mental and emotional health and deserves the same recognition and support as other areas. 

I could go on for pages about the updates from ECTRIMS, but instead I wanted to flag my key learnings and pass on to others that there is hope. Work is being done to improve things, people are working on trying to find a cure for this disease and that there are great advocates out there within the world of healthcare and research, who want to improve the lives of those living with MS. 

ECTRIMS gave me hope, and that was enough learning for me. 

The views and opinions expressed here are those of individual contributors and do not necessarily reflect the views of the Multiple Sclerosis Society of Ireland. Whilst every effort has been made to ensure accuracy of the information provided, the editor is not responsible for any error or inaccuracy contained herein.

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