Report by Graham Walker, October 20th.
Note from MSNZ: In September 2025 MSNZ Co-Vice President and person with MS Graham Walker and his wife Julie, travelled to Barcelona to attend the 41st European Committee for the Treatment and Research in Multiple Sclerosis (ECTRIMS). As an active advocate with a strong interest in science, research and improving outcomes for people living with MS, attending ECTRIMS had been a long-held goal of Graham’s. Graham has shared with us his personal experiences, learning and highlights.
ECTRIMS is the acronym for the European Committee for the Treatment and Research in Multiple Sclerosis and that committee holds a congress annually, usually in Europe, although next year it is scheduled to be in Toronto. It is touted to be the world’s biggest MS conference.
This year, the 41st, the venue was the massive International Barcelona Convention Centre (CCIB) in Spain. Incidentally, that’s 26 hours flying time from my home in New Plymouth.
The CCIB consists of seven huge lecture theatres, many business lounges, halls and meeting rooms and is spread over six levels including an underground auditorium with a capacity for several thousand. This was where the plenary sessions were held. This year’s congress was held in conjunction with the 30th conference of Rehabilitation in Multiple Sclerosis (RiMS) Conference, the European network for best practice and research in MS rehabilitation.
The congress ran over 4 days. Tuesday was labelled ‘Pre-Day’ and had a few less sessions to try to get to, but the next three days were absolutely hectic. The program had the days divided into six time slots with most time slots then having up to eight sessions running concurrently. I found it a challenge to decide which sessions I weighted as most relevant. For instance, these two ran simultaneously; “Aging in MS and Rehabilitation” and “Identifying and Monitoring Cognitive Impairment in MS”.
At a glance, the programme was organised thus;
- 4 main topics, clinical, therapy, pathogenesis and imaging and non-imaging bio-markers
- 19 scientific sessions
- 12 educational sessions
- 13 industry sessions
- 10 free communications sessions
- 4 meet the expert sessions
- 2 nurses sessions
- 2 paper poster sessions, where there was a total of 863 posters on display
- They then had 11 of the sessions labelled as “hot topics” which was indicative of the most relevant issues impacting the MS research community today.
Lots to take in even by those with little cognitive impairment!
I was very fortunate to have my wife Julie with me. She accompanied me to all but a couple of the more technically challenging sessions and often took notes as they progressed.
It was the biggest ECTRIMS yet with 9503 registered participants from 112 countries and 2513 abstracts presented.
While the extent of the research on display at ECTRIMS was most certainly impressive, most of the session topics I attended were not a revelation. I guess I can thank my involvement on the MS International Federation’s (MSIF) McDonald Fellowship and Du Pre Awards distribution panel for that. These are awards for post doctoral researchers from low to middle income countries working in prestigious institutions across the globe. Mind you, I did dodge some of the real technical presentations, like, “Development and Validation of a high sensitivity serum ELISA for detection of Neurofilament Light Chain (NFL) in patients with MS”. NFL is a protein released into the cerebral spinal fluid and blood when neurons are damaged and thus serves as a biomarker for myelin damage. The depth of the scientific presentations certainly left no doubt they were aimed at a specialist audience.
We only had time to walk into the venue and pick up our registration lanyards when Dr. Lydia Makaroff, CEO of MSIF spied us and introduced us to the friendly team she had bought with her from London. I’d recently met Lydia at a Multiple Sclerosis NZ meeting when she was visiting NZ. That was a great start.
Differential Diagnoses
There was a focus on the unmasking and treatment regimens of the MS allied conditions of myelin oligodendrocyte glycoprotein antibody-associated disease (MOGAD) and neuromyelitis optica spectrum disorder (NMOSD). We attended one session, along with about 800 others, where an Argentinian Neurologist presented, in detail, a case study of a patient’s disease course with NMOSD. It really was horrific and although the patient returned to good health he spent months in intensive care in an almost vegetative state.
I talked to a young lady from Scotland after my stint on the panel on Patient Community Day who has that diagnosis and she related her unenviable experience. She required intensive physiotherapy to learn to walk again. And yet, another young lady from the USA with the diagnosis told how she had completed the Berlin marathon on her way to Spain.
With regard to this aspect of the congress program it was great to have been present to hear Dr Benson Chen’s presentation on NMOSD and MOGAD at the recent evening in Auckland celebrating ten years of the NZ MS Research Trust.
Research that Inspired
As to what new and interesting research I picked up on in Barcelona, well, it was more about gauging and becoming aware of the direction and impetus of current MS research.
There are several drug developments that look very promising but I’d hate to promote any one idea while these products are still in clinical trials. Suffice to say the ECTRIMS atmosphere was electric with positivity and expectation.
The therapy that I view as having huge potential is one probably everyone has heard of and that is that utilising CAR-T cell technology. This is an emerging treatment that involves using genetically engineered autologous patient T cells to target and destroy the B cells that are attacking the central nervous system. Potentially this is a one time treatment to ‘reset’ the immune system. This technology is being developed in tandem with cancer therapies. Genetic engineering in medicine is really in its infancy and has massive potential. You may have seen the press releases recently around a clinical trial that is showing some very positive signs around the treatment of Huntington’s Disease; that therapy is utilising gene therapy and is a ground breaking.
There were several presentations and much discussion around remyelination therapies. There’s promising early clinical trial work around the results of two drugs repurposed and then used in combination; one an antihistamine, clemastine, and the other a diabetes drug metformin. But there’s a serious caution from the researchers that it shouldn’t be trialled except under strict controlled conditions because of side effects.
I’d been given a heads up on the way to the congress to check out the progress of a new drug entering phase three trial stage called Vidofludimus Calcium produced by a new biotechnology/pharmaceutical company, Immunic. I was advised that while phase two results weren’t that impressive, they were progressing to phase three clinical trials. so, there is still some hope. It has the potential to target progression (actually reduce EDSS score), reduce relapses and is antiviral so has an EBV potential advantage. It also has very few, and largely insignificant, side effects. I’m watching this with interest.
As to the development of new drugs, I found it interesting to hear Dr Xavier Montalban, who is a world leader in MS research and treatment based at CEMCAT in Barcelona, say that effectively the world waits for the American FDA to grant regulatory approval before approving treatments. He also echoed a call I’d heard elsewhere that researchers should optimise the primary endpoints of clinical trials. He also highlighted the need to develop more efficient MRI techniques or methods to measure clinical activity. We know that the team at the Matai Medical Research Institute in Gisborne under Dr Dan Cornfeld are working on that with the help of funding from the NZ MS Research Trust.
Gavin Geovanoni, one of the principle leaders of the ‘Brain Health; Time Matters’ work, along with Helmut Butzkueven, presented on the ocrelizumab O’Hand trial results, which were positive. He is the principal investigator on the study. Helmut has been a fantastic support for MSNZs work in the past and I was pleased to connect with him while he manned a not-for-profit stand for MSBase. He introduced me to the people around him as the guy who rides the length of NZ to raise awareness for MS – almost right!
There were several concepts voiced, that while perhaps not novel, certainly resonated because they were being aired in such a research environment. I heard mention that statistically as high as 30% of MS patients value safety over efficacy. This really is about how cautious people can be about side effects. I find that interesting when we are dealing with potentially such a serious disease. Also, that improved quality of life should be the primary outcome of all research. While as a person with MS I can understand that thought, I don’t agree as without ‘Blue Sky’ research, where the scientists are basically chasing a hunch, many new developments may not happen.
I picked up that the environment, or ‘playing field’, for research is a tad changed as a result of the COVID experience. Where prior to the pandemic the basis of proceeding with clinical trials had to be almost watertight certainty, the urgency of needing a solution through the crisis allowed a little more latitude. Apparently that philosophy of pragmatism has pervaded current medical research.
Putting NZ on the world stage
My involvement at ECTRIMS didn’t just stop at attending presentations.
Prior to leaving NZ I had been asked by the organisers to co-chair a wee session involving a group known as the Young Researchers Section. The discussion topic was an issue we refer to informally as, “nothing about us without us”. In Europe it is formalised as Patient Public Involvement in Research, shortened and referred to as PPI.
It’s taken very seriously, to the extent that all research institutions must have policies describing procedures that have to be followed. Their grant funding applications can then be dependent on a narrative of how those policies will be adhered to.
The session was quite informal and Julie joined the discussion too. I had regard to how NZ’s Sir Richard Faull involves his patients and public in his research into Huntington’s Disease. That involvement for him has been paramount to his research.
I made some excellent contacts from across Europe, South Africa and America through my attendance and will endeavour to maintain them.
I was also asked by the MSIF to be a panellist at the concluding session which was organised by Bret Drummond of MSTranslate. I was a member of a 5-person panel who were asked to discuss MS research as it relates to those of us diagnosed. I was led to believe, by Brett, that it would be an off the cuff discussion, but it turned out the other four had prepared statements they read off their phones describing their journey with MS research.
I must admit I was a tad unnerved, especially as I was third off the rank and it was in front of a hall of about 350 people. But no worries really. I’d been asked because I’ve been functioning for about 5 years for MSNZ on the MSIF panel, in a non-clinical capacity, that helps select candidates for post-doctoral fellowships worldwide.
Further to that, I was present when a group of fellowship recipients was presented to the crowd at an evening function. I mentioned that I recalled reviewing some of those peoples’ proposals when they were candidates to Dr. Anne Helme, the MSIFs Head of Research who leads the panel. In particular, I had the pleasure of meeting a lady who is a Mongolian Neurologist currently completing her research in Canada. She was one of about 14 applicants that year of which only two were granted and I told her I remembered her proposal and that it was impressive. She was quite emotional and took several selfies of us together.
At the ‘panel session’ we sat next to a lovely lady who was introduced to us as the Vice Chair of the MSIF, Ana Torrendemer from Barcelona. Julie and her got on very well and swapped family stories as the programme progressed. One of the ‘Expert Presenters’ that evening was Dr Mar Tintore who as well as being a head of Neurology and Professor at The Multiple Sclerosis Center of Catalonia (Cemcat) sits on the same MSIF fellowship distribution panel as I do. I took the opportunity to introduce myself face-to-face and have a wee chat.
Final thoughts
There is so much more I could tell about the ECTRIMS programme. The experience was absolutely magic; if I had any expectations prior to, they were far exceeded. It was a long way to go for a four-day conference and took a whole lot of effort to make it happen but I’d do it again next week, nah, perhaps next month! I would recommend anyone with an interest in research go, if they can.
To conclude, a big thank you to Roche Pharmaceuticals for helping with our accommodation costs during the congress and the MS International Federation for sponsoring our entry registrations into ECTRIMS due to my involvement with MSNZ.
Also, to the amazing people who personally helped get us to Spain. I’m humbled by your generosity.