CategoryPolitics, campaigns and information

MS controversies in India

Controversies in Neurology (CONy) launched about 15 years ago as an annual get together for neurologists to discuss topics where there is no single answer. And there are obviously many questions without a single answer in neurology just as in medicine as a whole. Over the years, CONy has become a fixture in the calendar of many of my colleagues. I co-chaired the MS section in March; here’s...

Instead of Monday Q&As – It’s MS Awareness Week!

You may be aware there is an annual World MS Day, celebrated every 30th of May since 2009, following an initiative by the MS International Federation. World MS Day 2020-22 has been themed *connections* There’s also MS Awareness *Week*, and if you live in the US that was early last month (sorry if you missed – I did), however here in the UK it’s *this week*. A number of events...

It Shouldn’t be like This (But it is)

Dominic Shadbolt () It Shouldn’t Be Like This (But It Is) Go with me on this… Someone finds a funny lump on their testicle or breast so they call the GP to book an appointment and get it checked out. Once the GP has checked it out and is suspicious, the person is catapulted onto a cancer pathway that presumes it is cancer until proven otherwise. This happened to me recently, and in the UK...

Saloua Mrabet – 2022 MENACTRIMS fellow

Hello !!                                                                                                I am Saloua Mrabet, the new MENACTRIMS fellow. I am an MSologist from Tunis, Tunisia. I am interested in Multiple Sclerosis and related inflammatory diseases and especially some hot topics in this field: HSCT, highly active DMT, Ethnicity and MS, genetics of MS and Women’s Issues in MS.  Happy...

Guidelines for Off-label drugs

This is open access so you can tell me what you think of this? Do you understand the process? Piggott T, Nonino F, Baldin E, Filippini G, Rijke N, Schünemann H, Laurson-Doube J. Multiple Sclerosis International Federation guideline methodology for off-label treatments for multiple sclerosis. Mult Scler J Exp Transl Clin. 2021 Dec 7;7(4):20552173211051855. doi: 10.1177/20552173211051855...

Au revoir

Dear Reader Today is the first anniversary of my near-death experience. What a year? It is good to be alive and appreciative of things I always took for granted; these are mostly simple things.  I am still having to adjust to my new normal and realise I am unable to do many of the things I used to be able to do. I need to prioritise and focus on fewer things with the aim of hopefully doing...

Disclosure

Disclosure seems to be the theme of many MS strands at the moment, so I thought I’d add my two-penn’orth. My only advantage is greater hindsight as I was diagnosed with MS 28y ago. More than half my life has been lived with the diagnosis and it is fair to say that it has influenced every single aspect of my life. Recently, I started to reflect on what that has meant.  Some insights are very...

Severed

Cast your mind back… Can you remember the very first time when your body began acting independently? Was it an unexpected stumble, a bout of double vision that mysteriously came and went or a spell of numbness? And your reaction? Confusion, disbelief or even fear? Pre-illness, we take our bodies for granted. As healthy adults we move through the day, confident our body will simply “follow” our...

Off-Label Use of Drugs

I give you something that is not MS COVID (p.s. thats below). Laurson-Doube J, Rijke N, Helme A, Baneke P, Banwell B, Viswanathan S, Hemmer B, Yamout B. Ethical use of off-label disease-modifying therapies for multiple sclerosis. Mult Scler. 2021 Jul 26:13524585211030207. doi: 10.1177/13524585211030207. Epub ahead of print. PMID: 34304636 Background: Off-label disease-modifying therapies...

SIZOMUS randomized clinical trial is on the roll

SIZOMUS anti-plasma cell RCT I’m happy to notify that SIZOMUS (Safety of IxaZOmib targeting plasma cells in Multiple Sclerosis) is re-commencing after MHRA approval. This follows a pre-planned interim safety analysis. MHRA stands for Medicines & Healthcare products Regulatory Agency and without their say so this trial would not have been able to proceed. The Medicines and...

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