CategoryPolitics, campaigns and information

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...

Playing second fiddle to the Swedes

Why can’t we use anti-CD20 therapies as immune constitution therapies? For some years we have been promoting our Barts-MS Essential DMT list to treat people with MS (pwMS) in resource-poor environments. One of the big guns on our list has been rituximab (anti-CD20).  One of the problems is that rituximab at a dose of 1g every 6 months is still too expensive to accessible for the vast...

Skint Britain

Did anyone watch ‘Skint Britain: friends without benefits’ on Channel 4 in the week? ‘Skint Britain: friends without benefits’ looks at the rollout and impact of the new Universal Credit scheme for British people who are unemployed or unable to work. The ‘big idea’ behind universal credit is to incentivise people who are unemployed to work or at least to be shown to be actively seeking work in...

HSCT Citizens’ Jury

Prof G, why do you talk with a forked tongue? I am taking stick from many readers about my stance on HSCT. I implied in a comment yesterday that I would seriously consider it as a first-line treatment if I had MS, but in reality, I don’t offer or support HSCT for my own patients with MS as first-line therapy. Some readers are accusing me of double-standards. Should I walk the talk and put my head...

MS in a snapshot: Global Burden of Disease study 2016

Trying to understand disease, especially rare disorders, at a global level is a Herculean task; not only from a resources perspective, but also from the cost and logistics involved. Before, the Global Burden of Disease study presented here, there was the Multiple Sclerosis International Federation that provided up to date figures on the global epidemiology of MS back in 2008. So, almost a decade...

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