#COVIDMS The Curse and Course of COVID. How are you doing?


There are reports of people with MS doing well on COVID that is great, but it is important that you understand the course of COVID and there are essentially two parts…The good bit and then for some the bad bit or the really bad bit.

Following the initial infection there is a period, seems to be about a week when the virus is escaping immune suveillance and probably all is well and not too bad and then there is a second phase when the immune system kicks in to destroy the virus, and with it in some people your lungs, and notably creates fluid on the lungs. This occurs in about two weeks when the severe lung inflammation problem occur. Therefore when you are on Twitter and tell your story, which is fantastic, please stay how far in you are, as it will help with the news stream and help people to understand the good news that you are doing well. When you are recovering Magic and thanks for the knowledge you are creating

Disease course

UK-based analysis of the problem indicate the mean duration from onset-of-symptoms to death to be 17.8 days (95% credible interval, crI 16.9,19.2 days) and from onset-of-symptoms to hospital discharge to be 22.6 days (95% crI 21.1,24.4 days) Fatality ratio across the spectrum of COVID-19 disease and demonstrate a strong age-gradient in risk (over and under 60)..

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  • I’m in London. Does anyone know how I can get tested? My son had contact with a child in his class who was skiing in northern Italy. He also had contact with children and siblings of children whose schools closed due to confirmed cases. He has had a cough, fever, sore throat for 5 days now. I have MS and have felt off colour. I would really appreciate knowing if he and I have it. Anyone know?

    • As I understand it, at the moment, unless you are admitted to hospital you can’t get a test. This also applies to front line health staff, which seems crazy to me.

      • How will you know of UK MS patients with covid? There is no testing available in the UK unless you’re admitted to hospital which I’m presuming means you’re in a pretty bad way?
        I feel that there is a case for the more vulnerable to be able to get tested ie myself as I’m pretty sure my child has it but cannot be 100% sure. This is just insanity imo.

        • I think there are some tests maybe to show if you have been infected, maybe formsalw in a few weeks.

  • https://www.gov.uk/government/publications/covid-19-guidance-on-social-distancing-and-for-vulnerable-people/guidance-on-social-distancing-for-everyone-in-the-uk-and-protecting-older-people-and-vulnerable-adults

    So pwms are in the recommended 12 week isolation group..

    But then it goes on to say this: Note: there are some clinical conditions which put people at even higher risk of severe illness from COVID-19. If you are in this category, next week the NHS in England will directly contact you with advice the more stringent measures you should take in order to keep yourself and others safe. For now, you should rigorously follow the social distancing advice in full, outlined below.

    People falling into this group are those who may be at particular risk due to complex health problems such as:

    people who have received an organ transplant and remain on ongoing immunosuppression medication
    people with cancer who are undergoing active chemotherapy or radiotherapy
    people with cancers of the blood or bone marrow such as leukaemia who are at any stage of treatment
    people with severe chest conditions such as cystic fibrosis or severe asthma (requiring hospital admissions or courses of steroid tablets)
    people with severe diseases of body systems, such as severe kidney disease (dialysis)

    Do you think those of us on the immunosuppressive dmts will be included in the super severe high risk group? 🙁

    Getting a bit worried now. And sad.

    • Re: “Do you think those of us on the immunosuppressive dmts will be included in the super severe high-risk group?”

      Yes, those who have been treated with HSCT or alemtuzumab in the last 3 to 6 months. The grey area relates to how well they have reconstituted, i.e. ideally you would like their total lymphocyte count to be above 800/mm3. I personally think the other DMTs are of intermediate- or low-risk.

      • Ah right, thanks for clarifying. That’s interesting. So Ocrevus probably won’t be included in this? Really unsure how ‘serious’ we need to be taking this right now!

        • Hannah I don’t have MS but am on immunosuppression. I am thinking of you and wish you all the best. Paddy

          • Thank you, you too.
            Personally am very lucky to be young(ish), healthy in other ways apart from the MS. Let’s hope we can all stay safe & end up with an uneventful covid situation if it does happen (which sounds to be likely for the majority even on some of the DMTS). I do fear more for others in my family at this point!

      • Prof G,
        This may be a silly question, but my treatment of Lemtrada finished on the 18th Feb, 1 month ago, does that mean I am not in the super severe high risk group for another 2 months?

          • I doubt it, alemtuzumab has a half life of about 12 days meaning half of it disappears every 12 days and it is essentially gone within a month, after this time you stop depleting and start repopulation your cells in three months your immature B cells have peaked

      • Ah. That now adds another question to the list for my annual (now telephone) appointment….

        I think there may be a few of us out there who have switched from Tecfidera to other drugs due to low lymphocytes. Mine came in at 0.8 in June last year before the switch but had been below at various points and I don’t think had been above that level for ages. I now have no idea what they are as there aren’t the same monitoring requirements with ocrelizumab….

  • I hope the guidelines are by lymphocytes level and not drug name… a lot of people on Tecfidera have low lymphocytes but that drug is hardly ever mentioned.

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