CategoryPolitics, campaigns and information

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...

Patient involvement, or not

Where is the patient involvement in designing the DMT guidelines for Multiple Sclerosis? According to the NHS: ‘People and communities are important to us because they help us improve all aspects of health care, including patient safety, patient experience and health outcomes – giving people the power to live healthier lives.’   The NHS England algorithm for using DMT’s says: ‘The...

This is BartsMS film week

In the COVID era the movie and cinema industry has taken a bit of a beating. You may have heard of Cannes and the Oscars In the East end of London the Canning Town‘ film festival is on and ProfK has been nominated for an “En-ree” (after Henry Croft) An En-ree Category: Best Animated Shorts We will be premiering them from Tomorrow CoI: This event was sponsored by Merck. But ProfK...

#COVIDMS Coronavirus COVID-19 – a new era?

Johns Hopkins (see below) have helpfully provided a world map of Coronavirus COVID-19 cases real-time () – join the dots… Despite the UN refusing to call it a PANDEMIC (defined as an epidemic occurring worldwide), scientists and health professionals agree it is just this. This concept of pandemic pandemonium caused by viruses is not new; in fact the record for the most number of...

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