ALT-TRIMS
He told me he found ECTRIMS boring and challenged me to design an alternative to ECTRIMS that would excite him.
ECTRIMS 2023 is over. For me, it was a meeting of meetings, and I had no time to attend the scientific sessions or browse the posters. I am now doing that from the comfort of my home office.
I met a colleague on the last day of the meeting who attended ECTRIMS seven years ago, and his take-home message was that nothing had changed; i.e. we were still discussing the same issues we were seven years ago. My reply was yes and no. Yes, in the sense of the research defining and diagnosing MS. But not how we now view MS's cause and pathogenesis. He agreed that smouldering MS was a hot topic, but he correctly pointed out that this was not a new story, as we had known about it for decades. He was unimpressed with EBV and felt it was only one potential cause of MS; he felt there were other causes. I reiterated my usual line that EBV is necessary but insufficient to develop MS. He didn’t understand the importance of this fact. When I asked him if he had seen the frexalimab (anti-CD40L) poster, he hadn’t. I told him he must.
He told me he found ECTRIMS boring and challenged me to design an alternative to ECTRIMS that would excite him. The following is a draft of my ALT-TRIMS meeting. The meeting is meant to be simple and run over two days; anything longer and you lose people. There will be no parallel sessions; everyone must attend the core meeting. Each talk will be 15-20 minutes long, with 10-15 minutes allocated to questions and discussion.
Please note there will be some overlap in the topics, but that is needed to address critical issues from different perspectives. Are there any boring topics? What topics should I include or at least have on next year’s meeting slate?
Day 1
Keynote lecture to open the meeting - “Is MS a biological disease? How do we define MS as a disease?”
Session 1 - EBV & MS
How does EBV cause MS?
What is the evidence supporting treating MS with EBV antivirals?
How would you design an EBV vaccine MS prevention trial?
What about the virus? Could a mutant strain of EBV cause MS?
Session 2 - Immune reconstitution therapies and MS
Are CD19-targeted CAR T-cells curing systemic lupus erythematosus?
Is there a case for using CD19-targeted CAR T-cells in MS?
How to define an MS cure?
Is there any evidence that IRTs cure MS in a proportion of people with the disease?
Session 3 - Diagnosing MS
Why can’t we diagnose MS without evidence of dissemination in time?
What pathological features of MS are specific for MS and could be used as part of a new diagnostic criteria?
Can you have MS and be EBV negative?
Which biomarkers should be used to define and diagnose MS?
Session 4 - Epidemiology of MS
Why is there an increasing female-to-male sex ratio in newly diagnosed or incident cases of MS?
Is the incidence of MS increasing? If yes, why?
Is there any epidemiological evidence that supports primary progressive MS being a different disease?
Are we reducing the need for wheelchairs in pwMS or simply delaying the time when they are needed?
End of day 1
Inspirational speaker at the Congress Dinner - “Cancer Breakthroughs and the Cancer Moonshot - lessons for MS.”
Day 2
Session 5 - Smouldering MS
Does everyone with MS have smouldering disease?
Is the microglial response in MS dysfunctional or a normal response to what is causing MS?
What is the evidence that CNS oligoclonal IgG response in MS is pathogenic?
What therapeutic strategies can be tested to scrub the CNS clean of oligoclonal IgG?
Session 6 - Genomics of MS
Can polygenic risk scores be used to define who will develop MS?
Are CNS resilience genes druggable?
What MS risk genes are druggable?
Beyond the genome, what evidence is there that epigenetics plays a role in the pathogenesis of MS?
Session 7 - Treatment of MS - DMTs
What is the rationale for using combination therapies to treat MS?
What is the rationale for using an induction-maintenance approach to treat MS?
How close are we to having effective remyelination therapies in MS? Is it a problem with the science or trial design?
How should we treat MS in older people with the disease?
Session 8 - Treatment of MS - symptomatic
Is sleep hygiene a problem in MS? How to screen for and manage sleep disorders in MS.
Is there a practical way to help people with MS to self-diagnose and manage bladder dysfunction?
Is medical gaslighting a problem in the management of MS?
Should we be monitoring cognition in pwMS? The case for actively managing cognitive impairment in MS.
End of day 2
Keynote lecture to close the meeting - “What will the management of MS look like in 2050?”
Please note the format of this meeting is similar to the annual ‘MS at the Limits meeting’ held in London. When I was helping to organise MS at the limits, over 95% of attendees preferred it to ECTRIMS, which tells you something about both meetings and what attendees like.
Please note that once I have had time to reflect on ECTRIMS and review the material in more detail, I will do a separate post on my personal highlights. For example, in Professor Hauser’s lecture during the opening plenary session, much important information was buried in the talk that needs addressing in more detail…..
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Please note that the opinions expressed here are those of Professor Giovannoni and do not necessarily reflect the positions of Queen Mary University of London or Barts Health NHS Trust. The advice is intended as general and should not be interpreted as personal clinical advice. If you have problems, please tell your own healthcare professional, who will be able to help you.
MS research has become an ever expanding industry - good for Professors, research teams, PhD students and pharma. The ECTRIMS meetings are an opportunity to meet up with some old mates, try the local food, and add some more air mile points. This was the 39th ECTRIMS meeting, but (as your alternative event illustrates), it’s about coming up with questions, not answering them. What has really been achieved over the last 39 years? Surely the advances in technology (imaging, computing..) should have helped answer at least some of the key questions still being debated. 1500 abstracts presented (more a graphic design contest than about any useful findings) - how many of these will deliver any real benefit to those with the disease? 9000 participants with all their PhDs, but there’s no agreement on whether EBV is the cause, or how to stop smouldering MS! If ECTRIMS reaches its 50th meeting, then this must be viewed as a failure. I’d scrap the current gravy train approach and have a meeting in 5 years time (2028). At this meeting 5 teams (collaborating across the world) would report back (definitive answers and ready to go solutions eg a specific anti-viral) on the key topics of EBV, smouldering MS, remyelination, neuro-restoration and prevention. Unfortunately, it will be like turkeys voting for Christmas. No one will rock the boat, so the current boring format for the ECTRIMS meetings will continue and no questions will ever be answered, and those air miles will keep building up.
I need the community to add a session / day all about dealing with day to day symptoms cause I am sick to death of the typical roller coaster of ;
Try Gabapentin, Tegretol, lyrica, this and that until we make ourselves sick and dizzy figuring it out. No one talks about helping our day to day. It’s frustrating while we struggle every day whilst conferences focus on stuff that doesn’t give us actual relief. It’s great to focus on diet and biomarkers but can someone alleviate my symptoms.
Day 3 :
Treating MS symptoms
What treatments are efficacious
How to treat xyz symptoms
Any new research and treatments in the pipeline