CategoryPolitics, campaigns and information

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...

Yin and Yang

What is your worldview of MS? Back in 1982 when I was in 1st-year medical school I had the good fortune of being taught by Professor David Hammond-Tooke, an eccentric social anthropologist, whose task was to make us view the world from different cultural perspectives. I was living in apartheid South Africa and Wits, a liberal English speaking University, wanted its medical graduates prepared for...

MS as an indication for HSCT – an American perspective

Dr Luddites As HSCT’s (Haemopoeitic Stem Cell Transplantation) popularity grows, the need for guidance and regulation grows in equal measure. Which is why in 2015, the American Society for Blood and Bone Marrow Transplantation (ASBMT) designated MS as a ‘developmental’ indication for HSCT, but has since reconsidered its position.It must be remembered that HSCT is a technology...

A call to arms – the need for a citizens jury on HSCT

A few weeks ago I did a post on using a Citizens Jury, as a potential way to deal with the emotive issue of a lack of access to HSCT as a potential 1st-line treatment for active MS in the UK. A Citizens Jury can help sort out the disconnect between the needs or implied needs, of the MS community, and the position of the NHS and/or the HCPs in relation to HSCT. A Citizens’ jury is when a group of...

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