Have MS? You are entitled to a Disabled Persons Railcard. End of discussion. If you don’t want to read how or why I know this then just apply here. Explain that you have MS, enclose proof and voila. For £54 over 3 years you and one other enjoy 30% off rail fares at all times. The background to this follows: Being the sort of person that does not like unequal treatment nor the illogicality of...
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...
Guest post: Part four of choosing a DMT
When in the police, many years ago, I went into some shocking situations. As a middle-class lad I often struggled to even understand how people could live like this. You’d never know it from external appearances with many people. If you want to gain confidence you rapidly learn to communicate at an entirely different level and understand the huge differences in interpretation of information and...
Guest post: Social capital and social prescribing
I was having a chat with a friend a few days ago. He said “I have heard people talking about social capital and social prescribing. I don’t really know what they mean, do you?” “Umm, not too easy”, I said. “I know it’s nothing to do with money, it’s not measurable and it’s all to do with your quality of life”. “Sounds interesting”! He wanted to know more but I could not really help him right then...
Guest post: Part three of choosing a DMT: Understanding risk
DMTs carry a much higher degree of risk than nothing at all and the reality of MS means that attitudes towards risk need adjusting. It is fine to come into the scenario assessing things in a pre-diagnosis manner, that is understandable. A patient needs educating about the whole post-diagnosis scenario now. The lens through which risk, regarding treatments, has changed. From the risks of opting...
The Best Multiple Sclerosis Blogs of 2019
It is nice to be recognised again and to remain on the shortlist of Healthline’s’ best MS Blogs for 2019.
Guest post: Part 2 of Choosing a DMT: the issues
Firstly, why the incredible hesitancy among some medics to flip the pyramid? Or at least break away from the Beta-interferons/Glatiramer Acetate as ‘safe’ fallback options, even when the research suggests that these days, the older first generation drugs give suboptimal outcomes compared to the modern crop. The MS neurologists that I spoke to all advocate versions of outlining the options...
Haemophagocytic lymphohistiocytosis post-alemtuzumab
After yesterday’s post on alemtuzumab-related posts, many people are asking about haemophagocytic lymphohistiocytosis (HLH), which has been included as a complication of alemtuzumab treatment as is now in the SmPC (summary of product characteristics). HLH is a condition in which the body makes too many activated macrophages and lymphocytes. People with HLH usually develop systemic symptoms, which...
Alemtuzumab’s Article 20
Use of multiple sclerosis medicine Lemtrada restricted while EMA review is ongoing EMA has started a review of the multiple sclerosis medicine Lemtrada (alemtuzumab) following new reports of immune-mediated conditions (caused by the body’s defence system not working properly) and problems with the heart and blood vessels with the medicine, including fatal cases. As a temporary measure while the...
Guest post: Free online course now open!
Along with a great team from the Menzies Institute for Medical Research at the University of Tasmania (Australia) and Multiple Sclerosis Ltd., I have spent the past year building a 6-week online course about MS for the MS community and the general public. The course, entitled “Understanding MS”, has recently opened for enrolments and will begin on Monday 29 April 2019. The course presents up-to...