Twitter is where all #MSCOVID19 action is happening

In my inbox this morning there were several emails from people with MS asking the same questions. What should I do; self-isolate or continue as is? Should I stop my DMT or continue it? Am I at increased risk of COVID-19 or not? If I get COVID-19 am I at risk of developing serious disease? Should I purchase a ventilator? I have symptoms of COVID-19 what should I do? Are there any patients with MS who have or have had COVID-19?

I am now creating a template email response directing them to my COVID-19 & MS microsite and saying if after reading the contents this doesn’t answer your question please ask your question(s) using the online portal so that when I make an attempt to answer it everyone else can learn from it.

Twitter is turning orange; MS orange!

There appears to be an increasing number of patients with MS who have or have had COVID-19 that are being reported on Twitter. The following are some of the relevant tweets. If you know of any other cases please let us know.

CoI: multiple

8 thoughts on “Twitter is where all #MSCOVID19 action is happening”

  1. Question for the MS selfie site/to answer here

    I am a health care worker on Ocrevus for RRMS. I am able to work at home due to an understanding department. I am still at risk as husband counties to work as health care worker.
    The letter to GPs puts biologics in their list of ‘very high risk’ immunosuppression. All I have read from yourself on this site and MS selfie has reassured me that although yes I am immunosuppressed, it is moderate at most. Is it possibly that the umbrella of ‘biologics’ cannot be a one size fits all, or is ocrelizumab a highly immunosuppressive drug after all?

    1. I’ll leave ProfG to give you a formal reply. That way you get a consistent response.

      However, I know this is profGs personal view that we need to be pragmatic and adaptable to circumstances, being rigid may give you ar starting block but the biology says that one size should not fit all. We should also regularly assess that view to determine if we are wrong and listen to what the real world is telling us. Within two-three weeks there will be more and more MS experience.

      As for your risks, I trust that you other halve keeps safe. If you can think about the spare room, if you have one,…a good nights sleep away from Snoring…..MrsMouse has been getting the best nights sleep ever:-).

      1. I’m going for my 160 infusion of natalizumab on Wednesday, hope I won’t get the virus. 🦠🤞

  2. Thank you Prof G and to all the Doctors, Nurses & front-line healthcare workers including GP’s and their teams. You all doing a brilliant job and all your information, support and is so very valuable, much more at this time. Thank you for looking after us all – you all deserve a HUGE world hug.

    This goes out to the HCPs in Italy, Spain and all over world. Stay safe, keep well & we are all so grateful. xxx

    PS – I love the orange twitter logo 🙂 – Keep on informing x

  3. We need to get the #MSCOVID19 onto the tweets so they can be collated, we are missing them perhaps it would be an idea to get ECTRIMS to email all neurologists to ask them to use this hashtag, so that you have one universal system.

    Also if people with MS use this # then it is has the best chance of informing people as you can then do tweet desk and soon as a tweet appear you can easily monitor it

      1. OK but none of the examples you showed did use this…so suggests you may be missing alot

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