Daily Briefing Covid-19 [1st April 2020]
Merhaba, - Yes, it is April fools day. No, I haven't got a trick for you. Yes, I am a humourless bastard. no, I don't really care what you think ;) --------- MS Stuff --------- I just finished interviewing a consultant neurologist at Imperial College London about the supercritical MS Register (https://ukmsregister.org/Questionnaire/coronavirus_covid19/79/0) and their aim to trach Covid-19 in MS patients. - Up until now and for the foreseeable the advice to pwMS is, and can only be, based on the clinical experience and expertise of the specialists treating us. - They are used to data, Evidence Based Medicine (EBM), and some are v uncomfortable without and others are more confident in their knowledge. The MS Register is a fully anonymous database of the data of people with MS and they are running an additional strand of data collection specifically about MS and Covid-19. It is Only with this and other countries coordinated efforts will we be able to build a database to make judgements from. - This requires you and me to invest a few minutes of our time to participate. Please use 10 minutes of =your downtime to jump onto the URL I gave above and complete the short questionnaire.. On Behalf of Dr Osbourne and all the team, thank -you so muck. ------ Social Things ------- Here is a round-up of the rather muted April Fools Day stuff - https://inews.co.uk/news/april-fools-day-2020-live-best-jokes-pranks-lies-misinformation-latest-news-2524754 - Enjoy, take-care, all the usual about handwashing and shooting strangers on sight. Be safe.
@dominics did the neurologist advise about Ocrevus ? There are mixed messages from what I can find. Does it make one more vulnerable or not? Yesterday I looked at Barts Blog where there was a report of a recent debate on the topic, lots of technical data and information on the slides there. The people who posted it gleefully concluded that they 'had smashed it' Had they? What was their conclusion? As a pwMS who has had dose one and due number in July which I'm ok about being delayed, I wanted to find out more. I know we're used to uncertainty ...but really?! Also the Dept of Health removed MS and all other neurology conditions from their vulnerable list on Monday. Who decided that? I am mobile and well, but some others with MS are more vulnerable clearly. I for one would like the UK neurologists to be clearer to us. And to the Gov. It is a stigmatised condition and I do not want to be at the back of a queue for ventilation help in horrible the event of needing it. keep up your help with information for us!
@bernadette I'll take things 1 by 1 as I think they can be confusing. - I am on ocrelizumab (Ocrevus) so have more than a vested interest in what I am going to say. - - The call yesterday was a v technical academic style debate. Not a 'he said' 'she said' sort of argument. I was there for the entire thing. I'd like to think I have a handle on things but really the distinction in what they were debating - Dr David Baker a neuroscientist and Prof Klaus Schmierer (both in the same office at Barts from what I gather and both on the same research group under Prof Giovannoni) - was really quite fine and nuanced. If you are good with sorts of graphs and stuff then go for it. I don't want to talk down to you. However, it is v close to what I studied recently and I struggled to keep up with a lot of it! I am not the brightest coal in the barbeque so that may say more about me! If I were to sum it, not much to see here. Two clever guys arguing a very tightly contested and v v minor point. - - We are in slightly uncharted waters re: Medical Recommendations on anything in light of the blinding speed of movement of Covid-19 (btw Sars2 is the precursor to Covid-19 and you may hear the bo9ffins talking about it but ignore) - - Recommendations are made at a government level in a very broad-brush manner. If you don't want to go any further then stay in, isolate and all the good stuff. - - Will Ocrelizumab harm us? There was some query to start with but as time passes and more and more reports come in from around the world (#MSCOVID19 on Twitter has become the place for neuros to report specifically on MS and DMT issues related to the virus.) it seems not only that ocrelizumab doesn't pose the risk once imagined it and the other DMTS (barring 6-12 months post alemtuzumab and 12 mo post-HSCT esp with lymphocytes below 800) are also not showing any signs of being linked to a worsening of virus effect. - - In short - Ocrelizumab does not appear to put one at greater danger. We are no more or less at risk of catching the virus and the vast majority of us on DMTs do not appear to be at any great risk of having the symptoms worsen as a result of taking a DMT if we do catch the virus. - - Good news! - - There are several videos from Shift. The most recent one is a v well known and respected American neurologist called Aaron Boster MD talking just about the drugs. - - This is the channel. watch vid 4 but do watch them all. Yes, I do the interview but my job is to put community qu. to the neuros and nod a lot. I am repeating what they say. - - The www.ms-selfie.com website has a drug risk matrix on it and is a jolly good resource. - - I was very concerned three weeks ago. Now, I am in isolation with my wife but I am totally relaxed about being a full 3 infusions into ocrelizumab. - - I am concerned about 1 main thing and that is that I do not want to catch it now (we will all get it at some point) because the load on the hospitals is too high. If I get it I am unlikely (as are 95% of us) to need an ICU bed. I do stats and 5% is far too high for my risk tolerance so if poss, I'll swerve the whole thing for about 4 more weeks.