COVID-19 & MS Microsite

We have created a specific COVID19 & MS Microsite to curate relevant information for people with MS and their families. The site is being updated on a daily basis. Please use this site to ask clinical questions related to COVID-19 or use the form below. Please note the answers to questions will then appear on the COVID-19 & MS site. Thanks.

CoI: multiple

20 thoughts on “COVID-19 & MS Microsite”

    1. Where is this information coming from if it is not from a government source be cautious the message was clear yesterday from the prime minister there was no mention of regional variation

  1. I currently take Gylenia for MS also have colitis and in past ITP and I am on long term antibiotics for recurrent kidney infections should I be sheilding in UK for 12 weeks. There is conflicting information depending on what area of country you are in.

    1. Every one should be shielding for 12 weeks unless you have essential function or are traveling to work and then you need to ask is this necessary. Check out government website for latest advice

      1. It’s not clear at all from government – a lot of confusion in our support groups, relating to whether people need to stay at home EXCEPT FOR getting food, meds, 1 piece of exercise per day (= increased risk subgroup of the vulnerable group) VS. SHIELDING which means you don’t leave your house EVER, just open the windows, must not go to get essential food and meds etc. (the other subgroup called ‘extreme risk’).

        Looks like you only technically qualify for Statutory sick pay if you are in the ‘extreme risk’ (shielding) group.

        According to the MS Society page, cladribine, Lemtrada and HSCT automatically qualify you for the extreme risk subgroup of vulnerable.

        Whether or not other DMDs put you into the ‘increased risk’ subcategory, or ‘extreme risk’ category: there is no specific guidance, just whether or not you get the NHS text, or whether or not your MS team tell you to self-isolate.

        Without this, we can’t insist we are in the ‘extreme risk’ category and get an isolation note so that our employers support us and we can get SSP.

  2. Seeing this video from Kurtzgezagt about the COVID-19 made me think of the viral hypothesis in MS. They say that most of the damages are done by the immune system made crazy by the virus. Would you think that something similar happens in MS (in this case the lung would be the nervous system)?

    1. Mybe but in most cases a virus has not beenfound, although Italian group says it is EBV

      1. I remember reading on this blog people convinced by the virus hypothesis (notably because of a patient mistreated for HIV who saw her MS symptoms relieved). I even gave money for a crowd-a-cure campaign. You had really good arguments for this hypothesis. Did you stop following this lead?

      2. You never heard of the Temelimab? Geneuro a swiss group found an antibody against HERV that may work in MS. I think they are doing phase III test in northern Europe, these studies are essentially paid by Merck and Novartis. Shouldn’t you be aware of that?

  3. With the current global lockdown across the world, and it potentially going on for months. If not longer.
    With so many people not having the luxury of gardens or outdoor space, and as measures become stricter, is there a potential for an increase number of cases of MS due to lack of sun exposure?

    I wonder what other long term health impacts this will have. Mental, obesity, increased smoking/ drinking etc

    I have seen a fair number of people running but I wonder how long this will last when things get worse than they currently are.

    I was taking my daily vitamin d tablet and it sparked my initial question

  4. We must recognise the hard work of the NHS hospital porters, cleaners, lab technicians, nursing associates and health care assistants, ID staff, security staff, physiotherapists, admin staff, speach and language therapist’s that are working very hard at this time, in addition to doctors and nurses.

  5. Smoking cannabis, even just occasionally can cause inflammation in the lungs. Making complications with Covid-19 more likely.
    How do pwMS that smoke cannabis feel about this?

  6. OK I have MS and currently have Tysabri infusions once every 6 weeks. I work at a school and there obviously is now talk of when they are likely to go back. I was sent an email today asking me to fill in a table ticking yes or no to the following: Did i receive a letter from the government telling me to stay at home and secondly if I am living with someone who did. I ticked NO to both as this is the case. So when schools finally re-open am i supposed to be sticking to the original 12 weeks social distancing or am I not considered so much of a risk and can return to work?

  7. How safe is it to go back to work while making pretendolimod? Are there known cases of covid 19 making fingolimod?

  8. I am a frontline RN at a major Trauma Center. In regards to the COVID 19 pandemic, I was placed out of work by my Neurologist as I am on Ocrevus infusions last received 2 days ago. There is no way the hospital can accommodate my precautionary needs. That being said, when is a time for me to consider returning back to work? I cannot stay out forever?

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