CategoryNews and events

Guest post: Oceans of Hope is coming to Edinburgh

Visit us in Leith Harbour Oceans of Hope is still sailing – back in 2014 to 2015 we sailed around the world in our 67 feet steel sailing boat crewed by PwMS. This summer we are going to Scotland. On August 19 we are visiting Edinburgh and hosting an event in Leith Harbour together with MS Brain Health, Anne Rowling Clinic, EMSP and the MS Society Scotland. From MS Brain Health and Barts we are...

Measles a known unknown

I was called to casualty to assess one of my patients with MS who was on natalizumab. She had been admitted with a temperature, confusion, seizures and a generalised skin rash. Within thirty minutes of seeing her, she went into status epilepticus and had to be sedated, intubated and admitted to ITU. Within 72 hours she was dead. At post-mortem, she had a measles pan-encephalitis. Four days before...

Goalposts

We need to keep pushing the envelope and moving the goalposts in terms of our treatment targets in MS.  As MS advances innate immune activation with microglial and astrocyte activation occurs. However, the latter may be adaptive in response to damage and hence a good thing, which is why I am sceptical about treatments aimed at targeting these cells in advanced MS.  In comparison, B-cells and...

PML carryover onto ocrelizumab

I have just received the following information from Roche, which is reassuring in that As of July 3rd 2019, the Roche can confirm there have been no new carry-over cases of PML in MS patients treated with ocrelizumab since their last update in April 2019. The seventh case was reported in March 2019.As of April 2019, over 100,000 people have been treated with ocrelizumab globally, within a...

#ThinkSocial

At our second MS Services Variance meeting, ‘Raising the Bar’, in Birmingham last week my colleague Helen Ford and I co-chaired the workstream on the social determinants of health (SDoH).  What are the SDoH? The SDoH are life-enhancing resources, such as food supply, housing, economic and social relationships, transportation, education and health care, whose distribution across populations...

Resilience

Down, but definitely not out! The WHO rejected our application to get glatiramer acetate, fingolimod and ocrelizumab/rituximab onto the Essential Medicined List. Why? The following is the relevant section from Executive Summary: “The Expert Committee recognized the public health need for effective and affordable treatments for multiple sclerosis (MS) but did not recommend the addition to...

Raising the bar – 3yr vision

Chair of the ‘MS Service Provision in the UK: Raising the Bar’ steering group, Professor Gavin Giovannoni, sets out a succinct vision for the national initiative over the coming three years.  Background  Why should someone with MS who lives in place B get a different service to someone who lives in place A? I have argued that variance, when it comes to the provision of healthcare...

MS Masterclass 2019

Are you a trainee in neurology? You may be interested in attending the 2019 Masterclass for Specialist Trainees with a focus on multiple sclerosis, July 19th at the London Paddington Hilton, 146 Praed Street, London W2 1EE, United Kingdom.

Thank you

Dr Antonio ScalafariConsultant Neurologist, Imperial College Healthcare NHS Trust

25 years

I mentioned in a comment yesterday that “MS is unrecognisable to what it was 25 years ago. It is all about early diagnosis and early effective treatment; if you miss out on these it is not good news”. In response, a commentator said “what it really was 25 years ago … and what you remember are going to be different” and “if someone has PPMS …. it’s not”.  This commentator is wrong on both...

Guest-post: MS mindset

Many people with MS experience cognitive difficulties (poor concentration, trouble remembering, “cog fog”…). We know quite a bit about how these difficulties play out on formal tests that psychologists use. But we are less good at understanding the experience of people with MS with cognitive difficulties. There are a number of questionnaires that report cognitive difficulties that have been...

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