CategoryPolitics, campaigns and information

Marmite on toast: the social crisis and MS

Recently one of my patients chastised me for telling her off for her poor diet, which consisted mainly of bread. She lives alone, which may explain why she eats so poorly. She has marmite or jam on toast for breakfast, a sandwich for lunch and if she feels hungry another piece of toast for dinner. Interestingly, my mother used to refer to her elderly stepmother as a tea-and-toast lady and I never...

Multiple Sclerosis Research

A comment on the Multiple Sclerosis Research Blog In a world where it is easier to be lost than discovered, dissonance is the word of the day. When you have a serious medical condition, your day to day life is suddenly uncertain and unpredictable, your mood, a narrative from the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition – DSM-5 for short, and its 186 footnotes...

Reinventing the wheel or the 4×4

We were rightly criticised last year for holding a meeting that highlighted the problem of variance in the provision of MS services, in the NHS. without a plan and vision about how to change things. I hope we have listened to you. The follow on meeting that we are hosting next month (8th-9th July) has a more ambitious agenda; it will even come with a 3-year action plan. I have always made the...

Information asymmetry

Outside the field of medicine, for example in law and economics, information asymmetry deals with the study of decisions where one party has more or better information than the other. This asymmetry creates an imbalance of power in decision making and transactions, which can sometimes cause these decisions or transactions to go awry and cause a breakdown in trust or market failure as worst-case...

The Natalizumab #AttackMS Trial

We propose the very early use of natalizumab to maximise outcomes in people with very early relapsing MS. In the European Union, natalizumab is licensed to treat adults with highly active relapsing-remitting multiple sclerosis for the following patient groups: Patients with highly active disease despite a full and adequate course of treatment with at least one disease-modifying therapy (DMT) or...

Guest post: All Aboard…for your DPRC

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...

Health Vault: a failed experiment

Microsoft’s HealthVault promised to revolutionise the way medicine was done. The fact they are closing it down tells a story. Not enough vision and commitment. Very disappointing. Maybe the MS Brain Health consortium will do a better job with MS-Connect. What do you think? IMPORTANT NOTICE ABOUT YOUR MICROSOFT HEALTHVAULT SERVICE Microsoft HealthVault service to end November 20, 2019 This...

Why is everyone drinking anti-CD20 kool-aid?

Prof G will ocrelizumab and rituximab prevent SPMS? Just back from the COMBAT-MS stakeholders meeting in Pasadena with the Kaiser (Kaiser Foundation Research Institute) and Swedish (Karolinska Institute) trial teams, PCORI (Patient-Centered Outcomes Research Institute) and many brave an wonderful people with MS and their families. The COMBAT-MS study (NCT03193866) is recruiting well and is on...

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