#MSCOVID19 Preliminary UK Experience

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DrNikos from Nottingham has spoken at the International Women In MS (ProfG gave links to the Youttube channel) on the MS register Initial experience. I am sure he and his colleagues want to thank the the thousands of people who have signed up to do the questionaires. If you haven’t signed up please considered doing so as your information if essential to help us understand what’s happening. There were only 37 PCR confirmed cases but there were more suspected cases.

to date

“Young people more likely to experience COVID-19 Symptoms and most of them are doing well”.

“So Far……….We have NOT found that being on disease modifying therapies alters the risk of COVID-19 in people with MS”

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MouseDoctor

8 comments

  • It’s hard to know if I had Covid-19 or not, I have MS. I had a sore throat for several days and slight breathing issues in bed only, this was before the lockdown. Initially the advice was a sore throat is not a symptom, and then advice changed to it is a symptom.

    • You will have to wait for a test…based on data I have seen the IgG response stays for at least 50-60days but it is on the way down and the question I have is whether the the asymtomatic have them and how long they last….this is the key question. In one paper the detection rate was 20% that may have been with an insensitive test. Last we heard was the oxford test wont be around until June, hopefully we will have made our own test by then

  • This is reassuring to hear. Does it mean that the ABN will reconsider its position on continuing ocrelizumab with this information? Any ideas when the guidance might be reviewed?

    • I understand that the ABN are having a review imminently….I have just got my paper accepted slagging off their position. Maybe it means I can do Slagg-off part 2. I am sure there will be more info soon,I wonder how it is done, the American rheumatologists published details of the Delphi process ( you ask a question you get a response), modify the question based on the response and so on…Obviously you get a panel

      • I’m also curious why Prof G is continuing ocrelizumab in his patients and he’s part of the expert panel referred to by the ABN. Was he overruled by the others on the official ABN position?

        • You have made a very good point…Maybe he will give his opion but from the outside he either agreed that day and flip-flopeed the next or he is being shouted down as a maverick by the grey suits with the majority rules which may be the case, but if you feel strongly you should have the balls to say do not put my name on the guidelines, because once you do you are endorsing it and if people listen to what you say they it sends a confusing message.

          However to answer your question I suspect he will be too much of a Gent to tell us what happens behind closed doors “What’s said at the ABN stays at the ABN”

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