#MSCOVID19: Fundraising

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Two months ago we floated the concept of doing a UK-wide seroprevalence study in UK residents with MS to see how many had seroconverted to become anti-SARS-CoV-2 antibody positive and to see if there are differences in seroconversion rates between people on different DMTs. 

The motivation was based on a prediction that people with MS on ocrelizumab would have lower titres of anti-SARS-CoV-2 antibody titres, be more likely to be seronegative despite a history of COVID-19 and less likely to have neutralizing anti-spike protein RBD (receptor binding domain) antibodies compared to patients on other DMTs.

It looks like we may be correct; some early case reports suggest pwMS on ocrelizumab may not seroconvert. 

In addition to the cross-sectional analysis, we proposed following the seronegative pwMS over time to study how the COVID-19 pandemic evolves and monitor the development of herd immunity. 

We have designed the study and in parallel, to applying for funding we got the study approved by our University and Ethics committee. We thought we had the funding approved, but at the last minute due to a funding crisis, our funder said no. We are now sitting with a dilemma; an approved study with no funding. So we are having to revert to plan B; crowdfunding

Forms response chart. Question title: Do you think it is worth doing a national COVID-19/coronavrius seroprevalence study?. Number of responses: 88 responses.

When we did our survey you all agreed that crowdfunding would be one potential solution to our funding crisis. However, we can’t simply ask you to donate money. We have to put our money where our mouths are. So I have decided to come out of marathon running retirement to raise money for this study that will be managed by Dr Ruth Dobson and Dr Angray Kang. 

I have signed up for the virtual New York City Marathon in the medal-winning category. My aim is to complete a 26.2-mile run in London between October 17 and November 1. I will be joining runners from around the globe to make this the world’s largest virtual marathon. The question is does my right hip have enough cartilage left in it for me to complete the run? 

In addition, to me attempting to complete a marathon with a failing hip I am gently prodding other members of Bart-MS to do something as well. I may have one taker already, but more on this later. 

Our objective is to raise £25,000 to cover the costs of posting out blood spots to study participants. As this study is time sensitive we need to raise the money ASAP.

If you want to help us raise the funds please do not hesitate to contact us. 

Barts-MS JustGiving Fund Raising Site

Prof G with his virtual New York City Marathon bib on. Does he have what it takes to complete 26.2 miles?

CoI: multiple

About the author

Prof G

Professor of Neurology, Barts & The London. MS & Preventive Neurology thinker, blogger, runner, vegetable gardener, husband, father, cook and wine & food lover.

42 comments

    • The race is being organised in collaboration with Strava. I will record it and post by GPS data online as proof of completion or proof on non-completion.

  • I have an actual marathon during that time – my only race since February that hasn’t been cancelled or postponed. Beachy Head in October. My fitness feels pretty poor at the moment – the effect of no group runs (my preferred training environment), no races, and no commute meaning I am more sedentary than ever before.

    I’m not raising money for this one – I find the demands of fundraising on top of training and a very busy full-time job a bit too much. So I tend to donate to others’ causes instead.

    Plus, our fundraiser for our postponed West Highland Way run is still open: https://justgiving.com/fundraising/whw4shiftms hopefully our accommodation won’t be cancelled next year!

  • Firstly please accept my apologies for the following question. But the synic in me is forced to ask the following question. Given Prof G you strongly believe in the causation of MS which means you know exactly how to cure it. Then why don’t you crowd fund a trial in ms to cure it? Granted it requires more money. But given MS is still largely the disease of the rich I don’t see why MS and their families won’t fund the trial. Then you won’t need to do any of these studies as they would be irrelevant. But mind you that would mean stopping the funding for numerous research clinics and killing pharma cash cow and consequences for future budgets. Errrrr. Carry on Prof G.

      • JK is one person, granted a very rich person. But 100,000s around the world are reading. Why aren’t they being mobilised to cure MS? Or dare I say it there are more rewards for vested interests, making ms a treatable disease?

        • Ooop, just read the comments below. Other than SID, comments of gratefulness, positivity and platitudes from people inflicted with ms, why do these comments make me feel uncomfortable? Oh yeah, when their being short changed in ms research by vested interests and subsequently having their suffering prolonged till the end of their lives. Remeber what you do in life will echo for eternity (err gladiator with Ruasell Crowe). Meaning Time is dimension and all points of time exist simultaneously. Just because no one sees a bad deed doesn’t mean it isn’t recorded. Man I missed calling as preacher.

  • How will you correct for the confounder that pwMS, taking immunosuppressive medication, are likely to have engaged in less risky social contact and will therefore have a lower incidence of exposure to CoVID-19? You could antibody test their families too instead of national averages and then you’d be comparing like with like.

    • This is a very valid point, if pwMS are isolating or following very strict social distancing, they wouldn’t have or are less likely to have the contact with Covid-19.

    • Perhaps have a qualitative study running along side this study. May be self funded master’s student could do this, as a research project.

      • Where are these self-funded masters projects coming from yes we can get students but where are the samples comming from they would not fund teh consumables. We made ADA assays off student projects it took 4 projects (2 years) and it still isnt finished.

        • Hi MD, I did an MRes research masters course, finished two years ago, self funded and it was about MS. It was qualitative research. All the research was self funded and there was a focus group activity. I have MS.

          I was very resourceful and it is surprising what I did and didn’t need to complete the project.

  • Prof G, I mentioned before I work front line NHS, worked throughout lockdown and had the antibody test at work recently. It came back negative. I’m not currently on a DMT but had alem infusion two years ago.

    • I had sore throat and difficulties breathing in bed in Feb this year. Reflecting back I thought it might have been mild Covid-19 but no, recent NHS antibody test negative.

      Was the antibody test taken too late?

      • I’ve been reading that antibody tests are only accurate if done three to four weeks after Covid-19 symptoms.

        So how will this study deal with this issue?

  • Happy to contribute to this cause Prof. However, why not save your hip the trouble? Run a marathon Q and A session instead. 250 places. £100 entry. Everyone submits a question and 100 are picked at random (there are bound to be some repeated anyway) with roughly 2 mins on each one. You would be done in just over 3 hours with no physical effects (mental tiredness perhaps). What if you damage your hip running the streets of London and have to take time off work? We would all be more screwed than we already are. I’m sure we could get 250 willing participants in no time at all. After all, people like me spend loads of money on supplements, mris, private consults, physio, gluten free bread. This would truly be money well spent. Plus, it’s going towards more research for pwms. Win win. Just a thought

  • I like the idea of having an art sale and exhibition to raise money for charity. PwMS could create a piece of art and perhaps those with contacts could ask a few famous people to contribute a piece of art. The works of art could be auctioned or sold at a capped price. Make the artist names anonymous and after the sale ends the artists names with their art are revealed.

  • Why do you feel you need to do anything? Just say you are fundraising for a trial. A marathon has nothing to do with it. I’ve always hated these “shave your hair off” fundraising events. The cause of the fundraising should be enough. Don’t do yourself in doing a marathon. I’ll contribute if you don’t do a marathon.

  • I’m on ocrelizumab, also frontline worker (but worked from home April-Jun). Absolutely convinced I had covid beginning of March. Antibody test at work negative. Husband’s ab test also negative so I assume this means my persistent dry cough wasn’t covid, rather than it was and I didn’t develop antibodies.
    I think it’s a hard thing to measure!

    Now delaying my next ocrelizumab infusion deliberately so that I can get back to work properly. Who knows if this is the right idea. Ivory seems to know!!

  • How not do a t cell assay instead?
    Most people who recover don’t seroconvert
    Still they develop immunity to Sars cov 2

  • Life with MS is a marathon in strength and perseverance, so I commend Prof. G for his jump out of retirement and willingness to put himself through some pain, and risk possible bodily harm for the greater good.

    While you may not know how it feels to walk/limp/shuffle/roll in my MS shoes, you can run a marathon to show you understand my pain……. Prof. G you have my 100% support!

  • I would be very interested in the findings of this study. I am due my first full dose infusion of Ocrelizumab in December. Like you I was also convinced I had Covid-19 at the end of last year, as did most of my NHS colleagues. The only people who had antibodies were those that had a clear coronavirus infection this year and antibody test within a few months. I suspect too that many people on OC may have been shielding or at least being stringent with social distancing etc.

    I like your name badge btw, not sure I’d get away with anything like that on my NHS grade yellow badge 🙁

  • Hi Prof G and Barts MS team,

    Apologies, this has turned into a really long list of questions:
    Re
    ANONYMOUS
    August 26, 2020 at 2:47 am
    I’ve been reading that antibody tests are only accurate if done three to four weeks after Covid-19 symptoms.
    (and other similar comments)

    Will you be collecting
    1. time between positive PCR and GloBody test?
    2. Severity of infection?
    So many variables! Is 3000 enough to allow for everything?

    Where will you find 3000 pwMS and previous COVID-19? MS Registry?
    Assuming only including pw positive PCR?
    (have lost count of how many tales of ‘pretty sure I’ve had COVID-19’ I’ve heard).

    How d’you know GloBody is so sensitive and is it specific enough? (yep I read the post! 🙂) does it need some sort of approval?

    Sorry, dim questions next, for anyone to answer:

    1. So far as memory of all previous infections or vaccines we’ve ever had, are long-lived plasma cells (how long?), memory B cells and antibodies floating around the peripheral blood all the time just in case? Can we really expect to find them in a blood sample?

    2. If CD8 kill viruses without needing antibody and CD8 memory cells exist… is that enough? Sounds like there are many reports of people not seroconverting, even after severe infection? How long do memory CD8 live?

    Apologies and thanks for reading 🙂

    • DearAnnonie…well read as ever.
      Accuracy of the tests….yes this is a problem and the duration of antibody is also a problem and the linearity of the test is a problem too.
      Time is always good to know
      Severity of infection is good to know…the severe symptomatics tend to express antibody for longer.
      3000 is you donts dream you wont get…we have 130,000 in UK

      Globody is sensitive and specific enough good question…we simply need to do enough samples and aim to go head to head against Roche and Abbott/ Are there differences. If you have been reading the Guardian
      however, it seems that the antibody testing has become a pissing competition about mine is bigger and better than yours and most disturbing for me the people doing the assessments are coming from places aiming to produce their own tests.

      For example Oxford Don said the Chinese test was crap (£20,000,000-£40,000,000) wasted…Now I have not problem with that the data has been published but the solution was to invent a whole new process with technology invented in Oxford. Therefore due to the actions of someone form Oxford, Oxford associated enterprises line their pockets.

      This oxford don says their test is “truly amazing”. However they (oxford) have patient zero samples and those of his contacts and so as they moved from negative to positive a level can be set. With these types of samples the original methodolog could have been tinkered with to make it more sensitive. However some body from Birmingham suggests that the Oxford test could be abit crap and guess what Birmingham have their own tests.

      Now I can’t say a thing about the oxford or the Birmingham tests so I dont know how good or crap they are but it is evident that people are using samples from very sick people to validate their assays and the main fighting ground will be finding something in the asymptomatic group. I wont say more about our response and the speed of it as I dont want to get into trouble. However, our covid response has not been about lining pockets.

      Long lived plasma cells….life long maybe
      Memory Cells live in spleen and lymph nodes, plasma cells in bone marrow…although antibody may disappear the memory B cells are still around in SARS-COV there could be detected for 5 years and T cells were still detectable abfter eleven years.

      • MD thanks for your comprehensive reply 🙂

        1. Re 130k with MS. Ok there can’t possibly be 3000 positive PCR. So for each dmt it must be some kinda matched population for test/severity/time/exposure/age?

        2. Let’s agree GloBody brilliant! 🙂

        3. Thanks for confirming memory cells safely tucked away in lymph nodes, plasma cells bone marrow (didn’t know that, think it’s the name). So test detects free antibody in peripheral blood found in decreasing quantity after disease.

        4. Not relevant but out of interest
        Re:
        memory B cells are still around in SARS-COV there could be detected for 5 years and T cells were still detectable abfter eleven years.
        🤔 how are these detected?

        • 1. I agree with you I will need to talk to ProfG about plans, originally it was all going to be done by the MS register before the funding offered was withdrwan do to COVID.
          2. GloBody assay works and it picks stuff up that others do not. It is something that we (royal we) have created and something that we can improve and something that can be developed into something even more useful for MS and our clinical pactise. Plan B use other assays but this will increase the price. We think we have a method to automate this.
          3. Yes free antibody, but unlike other assays we can dissociate the target from the antigen. We have more than one agent.
          4. Off the top of my head the T cells were a proliferation assay, cant’ remember the memory B maybe an elispot

  • How about a study of the pwMS who have already had an NHS antibody test so far?

    NHS staff, some care workers, some local government workers are included. Plus also those that have been inpatients and some trusts are now including the antibody tests to assist with diagnosis of illness.

    • Yes it depends on the ethics we have. We have ethics to look at healthcare workers, research staff, dentists and people with MS.

      • Thanks. I wonder how many pwMS are working in these jobs and have already had the NHS antibody test?

        I can think of four, so expect it’s a fair amount in England or the UK.

  • I am in the US so can’t benefit from such an effort in a direct way. However I’ll still donate as I want the work to get done. Do you know if there are other groups taking a similar tactic of direct fundraise for MS research?

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