15 thoughts on “#MSCOVID19 musings on Friday #11 post-lockdown”

  1. Hello Prof G.
    I can hear that this has been – and likely continues to be – challenging for you on a professional, and like the rest of us, personal level too. Thank you so much for summarising your thoughts here – which whilst sobering and important to hear and reflect upon. I hope they find the right audience to influence appropriately.
    I just wanted to take a moment to tell you quite how important your blogs have been during this period to myself and my family (daughter with MS, age 23 dx 4 yrs ago). I cannot overstate how much you influenced both our decision making and importantly our mental well being throughout – and that is priceless. For you to keep posting with everything else going on says a lot about who you are. So a huge thank you from everyone in our family. Take care of yourself – your family, your colleagues and your audience (or Village as Dr Aaron Boster would say!) need you

    1. I very much agree with this – Prof G please know you have helped my mental health during the pandemic and given me hope.

  2. I enjoyed watching this. I wanted to say thanks Prof G – some may have had enough of covid (haven’t we all in general?!) but it wa a covid that brought me to the MS Selfie site and I must say, this blog and that site have kept me sane so far throughout the bl*!dy awful situation.
    I appreciate you sharing your thoughts and constantly advocating for pwMS.
    I’ll be watching next Friday!

  3. Obligatory book case(s) present and correct I see.
    Charlie Brooker would approve 😉

  4. Thanks Prof G.

    I was interested in the trial to scrub the CNS clean of some sort of B cell. Could you say a little bit more about the thinking behind this trial. Also, why can’t anti CD20 therapies be injected into the CNS? Spinal taps are used to take spinal fluid out for analysis, so why not reverse the process and inject an anti CD20 therapy into the CNS?

    1. Trial was put on hold. CD20 have been injected into the CNS into the spine into the brain but the central problem is that anti-CD20 does not scrub the cells we want to get rid of.

      1. “Plasma cells that produce antibodies don’t express CD20.”

        Plasma probably alot more damage to progressive than rr.

        “Intrathecal production of antibodies, observed as the hallmark oligoclonal bands in the CSF, was suggestive that antibodies may be contributing to disease pathology (Li et al., 2018
        ). Strategies to deplete antibodies from MS patients have had limited clinical benefits suggesting that auto-reactive antibodies are not a major contributor to disease pathology in most MS patients. Since CD20 is not expressed on plasmablasts or plasma cells, the antibody secreting B cells are not depleted, and therapeutic benefits are observed without changes in antibody titers. Thus, antibody-independent mechanisms are likely responsible for the clinical benefit observed with B cell depletion…”

        Bcell depletion may be most important in how a reduction in
        APCs..affects Tcells.

        “However, the change in T cell subsets following B cell depletion observed in this study suggests that B cells are important APCs in MS, and depletion of B cells reduces T cell activation and shifts the balance of naïve, effector and memory T cells.”

        https://www.jni-journal.com/article/S0165-5728(19)30162-6/fulltext

  5. You guys have been using Cladribine via IV for years… What happened with CNS in patients that received it 5 or 10y ago?

  6. Prof G,
    Great post !
    I can see how passionate you are about this, and it is both a blessing and a curse.

    I think that you missed one benefit of the COVID pause.
    It gives many a chance to stop and think without all the noise of daily habits and make-work.
    Time to think about what is important and what is rubbish.

    Some time to look over existing data and research and try to combine areas of research into a wider understanding of MS and scientific and clinical progress.

    Sure, everyone wants to do new research and answer big questions. But lots of good experiments have been done. Progress has been made. Reviewing this and thinking hard about the best way to proceed with limited resources and time to optimize the path toward breakthroughs is beneficial.

    As a person with MS, I am continually knocked down with new problems. I feel as if I am aging at twice the rate of a person without this disease. I am told many times by many people, “This is your new normal, you need to embrace it. Don’t be so hard on yourself.” etc.

    So this advice is well meaning. And it also is partly true and partly incorrect. It is important to hold on to the true parts and discard the incorrect parts.

    This whole site and blog helps to clarify what is true and what is wrong. As we together begin to understand more and more about MS and adapt, we will prevail.
    It obviously is not easy or it would have been done long ago. There are many obstacles including politics, capitalism, greed, power, social and racial issues in addition to the scientific challenges.

    So take a deep breath, and listen to the same advice you probably give your MS patients, research workers, grad students and colleagues and just do the best you can and

    “Don’t Be So Hard on Yourself”.

    It is counterproductive to the goals you are trying to achieve.
    Keep up the good work!

  7. Dear Prof Giovannoni, Thanks very much for taking the time to put out this video. You mentioned the funding gap putting a hold on some promising lines of research. Is there a way to directly donate to those programs? Kind regards

    1. Dear Norbet, thank you for your interest. Yes, there are two ways of donating to our University. Via an online donation through our Alumnus office (https://www.qmul.ac.uk/alumni/); either into a common pool or for Barts-MS. However, some donors have donated money to specific projects and for this to happen we have set-up unique grant accounts to make sure the donation is spent on a specific project.

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