I arrived last night in Amsterdam for this year’s ECTRIMS meeting. Our first real face-to-face meeting of MS researchers and HCPs in three years. I am giving several talks and poster presentations. However, I will spend most of this ECTRIMS having meetings. Yes, this happens at conferences; it is all about networking and is why international travel to conferences will continue despite the large environmental impact.
EBV
It is clear that since arriving and speaking to colleagues, the buzz around EBV has not decreased. Saying this, the programme does not include much new work on EBV. Why? The scientific programme is typically designed a year in advance and it is likely that the seminal papers that were published on EBV earlier this year came out after the programme had been finalised. There are, however, several abstracts on EBV, a teaching session on EBV and some hot topic sessions on environmental risk factors that are likely to include discussion on the causal role EBV plays in the pathogenesis of MS. What I can say is that the pharmaceutical industry is getting involved and I suspect several new drug trials targeting EBV will start in the next 12 months.
Challenging the dogma
Jeremy Hobart and I are presenting a poster, “Multiple Sclerosis Science: a unique opportunity to advance scientific developments and patient care”, that incorporates the preliminary results of a live survey (download poster here).
The whole exercise asks people to challenge their current position and thinking on MS. We feel that the current worldview of MS, which is dominated by the clinico-MRI perspective, needs to change if we are to advance the field scientifically. You are welcome to complete the survey; it is not only for HCPs and researchers but for all stakeholders with an interest in MS (click here to complete the survey).
MS-Selfie
I am particularly proud to be showcasing MS-Selfie in a poster entitled “MS-Selfie: a donation-based online information hub to assist people in the self-management of multiple sclerosis”. You can download the poster from my Slideshare site. I am essentially presenting the concept behind MS-Selfie, how it came about, the philosophy about its designs and how it represents the evolving future of healthcare, i.e. the self-management revolution. I am presenting the results of the survey we did earlier this year to show that, at least for subscribers to the Newsletter, it is a helpful resource.
I have embedded QR codes in the poster to allow attendees to visit some of the Newsletters that I think showcase the potential of MS-Selfie. I will also give out cards with the MS-Selfie link to HCPs for them to distribute to their patients after ECTRIMS.
One of my colleagues recently criticised MS-Selfie, saying that I preach to the converted, in that people who subscribe and read MS-Selfie are already self-managing their MS. They wanted to know how it is helping pwMS who are not proactive about managing their MS. How should I respond?
It is like most initiatives in the MS space you have to start somewhere. Hopefully, more and more people will join the site over time, and the information will spread. As we innovate, we may start to reach people with MS who are difficult to get to. MS-Selfie will continue to evolve. For example, the curated website will make it easier to access information, the MS-Selfie teaching course will focus on teaching pwMS to teach about MS, and I have other ideas beyond this. What about an MS-Selfie self-help book and journal? Any other suggestions?
ECTRIMS highlights
I have been commissioned by a medical education site to do a video/podcast on my ECTRIMS highlights. I will do the same for you when I return from Amsterdam next week. Smouldering MS, EBV, BTK inhibitors and the treatment of radiologically isolated syndrome (RIS) or asymptomatic MS are already hot topics. I am sure other things will catch my eye over the next four days.
Subscriptions and donations
Paid subscriptions to MS-Selfie are being used to administer the Newsletter and associated MS-Selfie microsite currently in development. At the request of several readers, I have now added the option of making a one-off donation. To keep this initiative open to all readers, I would appreciate it if those who can afford a subscription to please subscribe. For active paying subscribers, thank you; your contribution is much appreciated.
General Disclaimer: Please note that the opinions expressed here are those of Professor Giovannoni and do not necessarily reflect the positions of Barts and The London School of Medicine and Dentistry nor Barts Health NHS Trust. The advice is general and should not be interpreted as personal clinical advice. If you have problems, please tell your healthcare professional, who will be able to help you.
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