Tag: triMS.online

triMS.online wins top award

Barts-MS rose-tinted-odometer: ★★★★★★ (A golden 6-star Thursday, #d4af37)

The great news, our triMS.online conference won the industry Communiqué Award for ‘Excellence in Global Education Meetings/Stand-Alone Events’  last night. What started as an idea on this blog back in October 2016 became a reality in 2018 and is now hopefully a permanent fixture in the MS calendar. This was a real team effort and it is thanks to the dedication and commitment of the teams at Oxford Health Policy Forum and Oxford Pharmagenesis that this was possible. The common denominator to everything that I have been involved in that has been successful is good project management and the team at Oxford Pharmagenesis are by the far the most talented and professional team I have worked with. Thank you and well done. This is also the team behind the success of the ‘Brain Health: Time Matters‘ policy initiative.

A big thank you to the triMS.online steering committee who help with designing and implementing the different programmes. The founding principles of triMS.online were to increase global access to MS meetings, particularly for HCPs living in low and middle-income countries and at the same time to increase the diversity of speakers, particularly women, young people and people from ethnic minorities. This was acknowledged by the judges and I suspect was the main reason behind us winning the award. 

I also want to thank our Pharmaceutical partners who have sponsored these meetings. Without your support triMS.online would not have become a reality. 

Where to next? Because of the pharmaceutical code of conduct that does not allow pwMS to attend triMS.online we are creating a separate meeting for pwMS called PRISMS (patient reflections and insights in MS). Our first meeting is called ‘Shining a light on MS learnings from the COVID-19 pandemic’ and will be on Thursday 23 September 2021m 19:30 – 20:30 BST (14:30 – 15:30 EDT / 20:30 – 21:30 CEST). If you have not registered yet please do. 

Conflicts of Interest

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General Disclaimer: Please note that the opinions expressed here are those of Professor Giovannoni and do not necessarily reflect the positions of the Barts and The London School of Medicine and Dentistry nor Barts Health NHS Trust and are not meant to be interpreted as personal clinical advice. 

#MSCOVID19: woods for the trees

Barts-MS rose-tinted-odometer: ★★★★

I am sure you know the term “I can’t see the woods (or the forest) for the trees”. This means you are unable to understand a situation clearly because you are too involved in it. I think this is what has happened to the MS community when it comes to managing multiple sclerosis during the coronavirus pandemic. 

We are so fixated on the potential risks associated with DMTs and COVID-19 that we are ignoring the elephant in the room, age and comorbidities. It is now clear that moderate immunosuppression from some of the MS disease-modifying therapies (DMTs) does not increase one’s risk substantially of getting COVID-19, severe COVID-19 or dying from COVID-19. The real risk factors for getting severe COVID-19 are age, progressive or advanced disease, which is closely associated with age, and the presence of comorbidities. 

I presented the ocrelizumab COVID-19 data at a satellite symposium on day-1 of our fourth triMS.online conference and it was clear to me that the risk associated with anti-CD20 therapies are trumped by age and comorbidities. It is also clear that the pharmacovigilance data for ocrelizumab has to be biased in that patients on infusion therapies and those with more severe disease needing hospitalisation, ITU admission, ventilation and sadly those who die from the infection, are more likely to be reported. People with MS who have mild or even moderate COVID-19 are clearly less likely to be reported by their HCPs. Therefore, the current data is likely to be the worst-case scenario. 

Another factor that is not being captured in this data is the fact that the outcome for COVID-19 has been improving. As treatments for COVID-19 and medical know-how, for example, how to manage ventilation and thrombotic complications of SARS-CoV-2 infection,  have improved the mortality from COVID-19 has almost halved. 

The issue of vaccine-readiness, which also raises its head frequently, is like the greasy pig; you may be able to catch the pig but it is almost impossible to hold on to. This is why I suggest batting vaccine readiness into the long grass and addressing the issue if and when a vaccine finally arrives. It has also become apparent as the immunology of coronavirus infection has become better understood that T-cell immunity, in particular CD8+ T-cell immunity, is likely to be the dominant player in driving immunity from primary infection and reinfection. Even if people who have been infected and do not seroconvert or lose their antibodies quickly, are highly likely to be immune to reinfection. Even if they are reinfected with the SARS-CoV-2 virus that causes COVID-19 they are likely to get asymptomatics infection or mild disease. Please note reinfection rates at present are very rare and get much more air-time than is warranted.

In my talk, I concluded that MS is a bad disease and we should manage it as we would have managed it prior to COVID-19.  I think untreated or under-treated multiple sclerosis is a bigger problem than COVID-19 for people with MS at present. 

I also stressed that prehabilitation is really important for people with MS and remains so. If you can, you need to do everything possible, to optimise your general health so that if you get COVID-19 you give yourself the best chance of recovering without complications. 

To quote from Chalie Mackesy’s bestseller “The Boy, The Mole, The Fox and The Horse”, when the boy asks the horse “What’s the best thing you have learned about storms?”. “That they end”, said the horse. 

This quote not only sums up my optimism but has also made me realise that the storm clouds have lightened, the thunder and lightning have moved over the horizon, the rain is not as hard as it was at the beginning of the storm and the winds have dropped in intensity. I get a sense that the storm will pass over very soon. 

I must compliment and thank Roche for releasing the ocrelizumab data to the MS community. The only other company that has attempted to do the same has been Merck in relation to their cladribine data. However, the data for cladribine is a lot less robust because of the smaller number of patients who have had cladribine and have subsequently gotten COVID-19. 

The ocrelizumab and cladribine data are what they are. Having the data in the public domain, however, puts us in a much better place. We can quote the data to our patients, reassure them about the potential risks, which are small, and use it as part of the decision-making process to manage their MS as best we can during the pandemic. 

CoI: multiple

Twitter: @gavinGiovannoni               Medium: @gavin_24211

triMS.online: diversity and youth

Barts-MS rose-tinted-odometer: ★★★★★

What do you do you do when you realise that your baby has grown up! 

Several years ago someone on this blog recommended launching OCTRIMS, i.e the Online Consortium of Treatment and Research In Multiple Sclerosis. I diligently registered the domain name and approached ECTRIMS for support and they said no they weren’t prepared to support an online offering and they asked if I would refrain from using the name.  We explained to ECTRIMS that the reason we wanted to launch OCTRIMS was to address the inequality of access to information on MS research and treatment. We felt women, ethnic minorities, people from middle- and low-income countries and the next or younger generation was not able to attend ECTRIMS because of financial and other cultural barriers. It was clear that ECTRIMS and other large MS meetings were being dominated by a specific demographic profile. We, therefore, had to settle for the less catchy triMS.online (Treatment and Research in Multiple Sclerosis  Online) instead; c’est la vie. 

A big selling point for us was the environment, i.e. how do we deliver online content that is environmentally friendly and reach and maintain engagement with our target audience. When we designed our first meeting we tried to rethink the conference and in particular the online experience. It became clear that the long didactic lecture format would not work. To simply replicate the face-2-face conference would not work. Our model was TED and TEDx talks, i.e. short well-rehearsed talks that were themed, to the point and engaging. At the same time, we had to put together a young and diverse International steering committee to make sure triMS-online lived up to its founding principles, i.e. more diversity (more women and ethnic minorities) and the next generation (youth). This is why I am so proud of the fourth triMS.online conference that delivers on so many of our founding principles.

So if you have the time to attend the live meeting please register and even if you can’t stay online for the whole meeting you can come back at any time to watch the talks in your own time. We promise that each talk will be well planned, short, to the point and with a limited number of well-defined objectives.

Enjoy and please spread the word to your colleagues and friends.  And a big thank you to you our supporters and the sponsors for making this possible.

CoI: multiple

Twitter: @gavinGiovannoni  Medium: @gavin_24211

#MSCOVID19: now for something completely different

I recently did a post that I called ZOOMED-OUT that was in response to spending too much time online in endless meetings, on webinars with information overload and preparing and watching too many didactic lectures. Therefore, we have changed the format of our next triMSx-online meeting into a Q&A session. If you are interested please register to find out more and to make the meeting more interactive and worthwhile.

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CoI: multiple

#MSCOVID19 – Managing MS during the COVID-19 pandemic

triMSx-online is hosting a webinar next Thursday, 30th April on the topic of managing MS during the COVID-19 pandemic. Things are moving so fast in terms of what is happening that we need some formal teaching course to keep everyone abreast with how to manage MS in these troubling times.

Our MS services have been transformed by the pandemic and the way we use DMTs has also changed. Advice on how to use DMTs seems to change on a weekly basis as new data emerges on the biology of SARS-CoV-2/COVID-19 and how patients with MS who get COVID-19 are doing. The programme (see below) has been designed to upskill you rapidly with developments across the globe and how these can potentially impact on your MS service. There will also be time to ask questions and discuss specific issues. Even if you can’t make the live event the presentations will be put online for later viewing and we will have a post-event Q&A session asynchronously.

Please register online.

Management challenges in MS: immunology

Have you registered for our third global triMS.online virtual conference on 13 February 2020?

The conference platform will open at 13:00 GMT, to allow delegates to explore the exhibit and poster halls. Those new to the area of MS may wish to join an educational session commencing at 13:30 GMT; the main scientific programme follows at 14:00 GMT.

I predict online conferences are the future. The environmental impact of large face-2-face conferences will not be justifiable within a decade.

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If you can’t attend the live meeting the talks will be recorded and will remain online for you to watch in your own time. Please let your colleagues know about the meeting. Thanks.

ONLINE REGISTRATIONS

CoI: multiple

Paediatric-onset MS

As you are aware approximately 3% of people with multiple sclerosis develop their first symptoms in childhood and adolescence. As the incidence and prevalence of MS are increasing we are seeing more children and adolescents with the disease. Why?

Relative to MS in adults, most neurologists and other healthcare professionals are unfamiliar with the diagnostic evaluation, clinical course, outcome, and management of MS in children.

To remedy some of these deficiencies we are running a dedicated triMS.online meeting on Paediatric MS on Tuesday 11th, June 2019. We have an exciting programme of international speakers. As with all triMS.online meetings you don’t necessarily have to watch them live, but can log-in after the event and watch the content in your own time. You can also ask questions, which the speakers will respond to for up to 4 weeks after the event.

www.trimsonlineconference.com

Don’t forget to register and please forward the invitation to your colleagues.

CoI: multiple

Extinction-Rebellion

If you live in London you may have had your life interrupted over the last two weeks by the Extinction Rebellion protests. This is a serious environmental movement that wants us to act now to save the planet from environmental catastrophe.

As part of the protest, my daughters have been giving me a hard time about my carbon footprint. They want to know if I am offsetting my air miles, which I do occasionally, that is when I personally book my flights. But in general, I am sure that most of my air miles are not offset. However, there is one initiative I am proud of that is addressing climate change and that is TriMS.online.

triMS-online is a virtual online conference for people interested in MS. The original idea of triMS-online came from this blog; thank you.  

The aims of triMS-online are multiple. The objective is to do punchy, short, themed MS-related conferences online that can be viewed as a live event, or asynchronously, i.e. when you have the time. This is particularly useful for people who can’t travel for family reasons, for example, you may have young children or you are a carer. Or you simply don’t have the time and/or resources to travel to large international meetings.

triMS-online is environmentally friendly; imagine how many air miles we are avoiding by not having to fly people to conferences?

The other advantage of triMS-online is that it takes high-quality MS research and education to resource-poor environments across the globe. We want a new generation of MS researchers and HCPs to have access to the latest MS research and teaching.

As founding chair of the scientific committee of triMS-online, I wanted to use the opportunity to shake things up a bit. When you go to ECTRIMS it is generally the same-old faces and KoLs on the platforms; the English refer to this as the ‘Old Farts’ syndrome, which includes me. We, therefore, invited a diverse group of ‘young’  MS academics from across the globe to run triMS-online and we made a strategic decision of having at least an equal number of women on the steering committee; in fact, 6 out of 10 of members are women.

The following is our second triMS-online programme, which addresses paediatric MS. We plan to run about 2-3 triMS.online conferences a year and have many ambitious plans for the triMS-online platform going forward. One idea is to host regional meetings on the platform, for example, a Latin American meeting in Spanish. Why not one in Polish or for that matter any other language?

I urge you to register for the next meeting and to submit posters. The platform is like a real conference with meeting rooms, social events and exhibition spaces.

We will be need feedback, including suggestions for future meetings. Don’t be shy and join the revolution, even though it may not be a rebellion.

We would encourage young academics, in particular, those who are from under-represented groups to submit posters for this next meeting.

CoI: multiple

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