CategoryNews and events

ASAP

I have just returned from the EAN in Oslo. A strange meeting of encore abstracts and talks; clearly 2nd tier for the MS community.  There were very few MSologists who attended. Why? They have all already attended either ECTRIMS and/or the AAN. All the MSologists I met at the EAN were either bused in to talk, to attend private MS meetings or to film CPD activities, but not to learn or be...

Taking flak for off-label prescribing

I was still wet behind the ears, in my 3-year as a neurology registrar in Johannesburg, when I first used an off-label DMT in MS. I manage to convince Vivian Fritz, my professor of neurology, to allow us to treat one of her patients with MS with mitoxantrone. This was shortly after the first case series had emerged from Germany. The patient concerned was a young woman with malignant MS who had...

e-Bikes and MS

It’s Bike Week. Here’s how I got back in the saddle again… with an e-bike I’ve never worn lycra nor “chewed the handlebars,” but when I stopped cycling six years ago because of MS, I missed it. So how did I manage to go on a cycling break last month? Earlier this year, a good friend called and said she was planning to get a bunch of people together to go cycling for a few days in the Loire in...

Japan epicentre of an Asian MS epidemic

I am about to return from a short MS meeting in Tokyo. This was my first exposure to Japan and Japanese culture. It is everything and more than I expected. I am beginning to get a sense of what ikigai means. Ikigai translates ‘to a reason for being, encompassing joy, a sense of purpose and meaning and a feeling of well-being’. Ikigai derives from iki, meaning life and kai, meaning the realisation...

Reinventing the wheel or the 4×4

We were rightly criticised last year for holding a meeting that highlighted the problem of variance in the provision of MS services, in the NHS. without a plan and vision about how to change things. I hope we have listened to you. The follow on meeting that we are hosting next month (8th-9th July) has a more ambitious agenda; it will even come with a 3-year action plan. I have always made the...

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...

The three Amigos

This week some of us with decanting to Edinburgh for the annual Association of Neurologists meeting. From an MS perspective, we will have lots to discuss including whether or not the UK MS community has the appetite to take on one, or all of these, studies. Which one do you think is the most important? The SALVAGE study, which is challenging NHS England’s DMT stopping criteria and saying...

Jetlag

Just arrived back from the AAN 2019 in Philadelphia. Jetlagged, which is why I am writing this at 2 am in the morning. As always the AAN is more a meeting of meetings or networking in academic lingo. These meetings have allowed us to progress several of our ideas including (1) DrK’s #MSAttack study with natalizumab, (2) to think more deeply about our proposed ADIOS Trial (adaptive dosing...

News flash Ocrevus has been approved for Primary Progressive MS…………in UK

This is not news if you are in say the US and Australia, but when Scrooge is in charge of the purse strings, as they are in the UK, then there has to be some behind the Scenes negotiation on price. Ocrelizumab is cost effective for relapsing MS but how do you rate ocrelizumab for primary progressive MS. Well NICE have driven that hard bargain and Roche has obliged and so the NHS has got the green...

Guest post: Social Prescribing – the first exploratory meeting.

Dr Saul Reyes, a neurologist from Colombia, is working with the Barts MS team for a year and is exploring the concept of social prescribing and the possibility of incorporating it into the Barts MS service. To kick-start this he spoke to the MS Advisory Group in February earlier this year. He then set up a meeting with Alyson McGregor the National Director of an organization called Altogether...

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