TagSurvey Results

Am I cured?

Barts-MS rose-tinted-odometer: ★★★★★ (seeing purple; a Sunday morning purple) Could you imagine if we made the treatment target in MS a cure? This is a very contentious issue; however, based on the current dogma that MS is an autoimmune disease driven by rogue autoreactive cells we should have the ability to either purge these cells from the body or imprison them via tolerance mechanisms...

Tickled pink

Barts-MS rose-tinted-odometer: ★★★ (seeing pink; tickled pink) Thank you for completing yesterday’s poll. It is quite clear that you, our blog readers, want us to prioritise the following changes to the way we prescribe DMTs in the NHS. The most important priority is for pwMS to access immune reconstitution therapies (alemtuzumab, cladribine and HSCT) early as 1st-line therapies for active MS...

Flashback

Barts-MS rose-tinted-odometer: ★ When I described in a post that I was having flashbacks, related to possible post-traumatic stress disorder (PTSD) from my accident, it struck a chord with pwMS who bravely described their own flashbacks about the way their diagnosis of MS was handled. In response to this, we teamed up with shift.ms to do an online survey of its members. We advertised the survey...

Vaccine Hesitancy Survey

Thank you for completing our vaccine hesitancy survey. The results are self-explanatory and it is great to see that such a high proportion of you are prepared to have a COVID-19 vaccine. We will be hosting a Barts-MS Question & Answer session on COVID-19 vaccines and our vaccination policy from 16h30-17h30, Tuesday 23rd February. We will be live-streaming the event via our YouTube channel. If...

#MSCOVID19 Ding-dong round 2

A 15-round heavyweight boxing match is a good analogy when it comes to describing our fight against the coronavirus. We have spent the last 3 months sparring and looking for each other’s weaknesses as we land a few body blows but no knock-out punch. Although we have flattened the curve we have a long way to go. The ultimate aim will be to knock-out the virus with a strategically placed blow to...

What’s in a name?

The Barts-MS team are in the final stages of preparing a UK MS Society grant application to tackle the ‘real MS’ that lives inside you. Our focus is on studying or defining what is smouldering MS. This is a massive unmet need and refers to what we currently call inactive SPMS and PPMS. This is likely to affect a lot of you; at present, you remain in the so-called untreated MS camp. Ocrelizumab...

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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