CategoryNews and events

Self-diagnosis

Dear Neuro, You see me once a year for 15 minutes, you look at my MRI report and blood results, you ask me a lot of questions, you examine me and then you tell me that everything is fine. At my last visit, you said my MS was stable, you mentioned to me that I was NEDA, because I had had no relapses, no new lesions on my MRI and my EDSS was static at 3.0.  I have now looked up and read about...

Short- or long-sighted

I saw three patients 9-and-half-years after starting treatment with alemtuzumab as first-line therapy, yesterday. It was a remarkable experience. Only one of the three patients had needed a third cycle of alemtuzumab. All are in long-term remission; i.e. flat-lining on the EDSS, relapse-free and with no MRI activity (NEDA-3). Their EDSS scores yesterday were 1.0, 1.5 and 2.0. All of them are...

#ThinkHand collaboration

I’m an artist, a painter, and a person with MS. I’m looking for volunteers to take part in and contribute to a new artwork inspired by the #ThinkHand campaign. My intention is to carry out several unorthodox and experimental portraits of people who are affected by the disease in various ways and stages. I would like to invite everyone who has MS or a carer or otherwise affected by the...

OVO Study

Finally, after a week or more of thinking and contemplation my opinion about the ofatumumab vs. teriflunomide trial data (ASCLEPIOS I and II); another of my ECTRIMS highlights.  The result of the ASCLEPIOS I and II are not unexpected and in line with the treatment effects of anti-CD20 therapies with some caveats.  Novartis summary: Both ASCLEPIOS I and II studies met their primary endpoints in...

MS@TheLimits2020

The following is the programme for the 3rd MS@TheLimits meeting in London next year. The feedback for the last two meetings (2017 & 2018) has been surprisingly good, which augurs well for our 2020 meeting. The following is the headline feedback from 2017 & 2018: 201798% of delegates found the meeting to be useful or extremely useful.100% of delegates found the organisation to be good or...

Potential leader?

Earlier this year I asked the question “why should someone with MS who lives in place B get a different service to someone who lives in place A?” and argued that variance, when it comes to the provision of healthcare services, is a euphemism for inequality, representing the ‘haves’ and ‘have-nots’ in society. This was a prelude to our ‘Raising the Bar’ meeting in Birmingham. We have set an...

Derisking anti-CD20 therapy

An important highlight of ECTRIMS this year was the data on the safety of the anti-CD20 therapies as a class. It is clear that prolonged, and sustained, B-cell depletion is not safe. Hypogammaglobulinaemia will become a problem with the risk of both common and opportunistic infections.  Stephen Hauser presented the 7-year ocrelizumab safety data and there is a clear uptick in infections in...

Help

I have been tasked with designing an International MS Masterclass to teach neurologists and other HCPS (healthcare professionals) about MS. The idea is to run four 2-day courses. I have put together the following draft programme and would appreciate your thoughts on it. If you have MS is there anything that you want to be added, i.e. is there anything that you would want your HCPs to know about...

Genius

My #ECTRIMS2019 highlight #3 is the elevation of fatigue to be the first secondary outcome measure in a clinical trial. Was this genius or a marketing coup? I would have loved to be a fly on the wall when the steering committee of the OPTIMUM study made the decision to bump fatigue to the top of the secondary outcomes. If you have MS you know that the most troubling symptom the majority of MSers...

What remains to be achieved?

I had many requests for my #ECTRIMS2019 ‘Hot Topic’ slides on ‘what remains to be achieved from DMTs’. You can download the slides from my SlideShare site. My message is blunt and to the point. Let’s not let ourselves be lulled into a false sense of security with our current crop of DMTs. They are simply not good enough. If we want to ‘maximise the lifelong...

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