#MSCOVID19: one microdonation at a time

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Thank you for being such kind and generous supporters for our Barts-MS COVID-19 antibody study. It is clear that Prof G running the virtual NYC marathon this weekend, or next, depending on the weather, is not going to get us to the finish line. Therefore, we are going to take your advice and launch Barts-MS webinars. The webinar idea was suggested by one of you in the comments when we launched our fund-raising campaign.

There will be a limited number of places to watch these webinars, but to be allocated a ticket we are expecting viewer’s to make a microdonation towards our fundraising efforts so that Drs Ruth & Kang can start and complete our COVID-19 or coronavirus seroprevalence study.

At the end of the antibody study we should be able to answer some of the following questions:

  1. How many pwMS in the UK have antibodies to the SARS-CoV-2?
  2. What type of antibodies are they, i.e. IgM, IgG or IgA, what is the titre or level of these antibodies and are they neutralising? Neutralising means they inhibit coronavirus infection of cells in culture.
  3. How many pwMS seroconverted who had documented COVID-19, possible COVID-19 or no history of COVID-19?
  4. What is the seroconversion rate on different DMTs?
  5. We also hope to follow a group of pwMS longterm with repeat testing to see how long these antibodies last and to see how many seronegative pwMS convert to becoming seropositive with time.
  6. When a coronavirus vaccine or vaccines emerges we able to use the assay to see who makes an antibody response or not and hence we plan to compare different response rates on different DMTs.

The following are some suggestions for topics for the webinars:

  1. What are arguments for and against HSCT as a first-line treatment for MS?
  2. What is on the horizon for treatment of advanced MS?
  3. What will the management of MS look like in 2030?
  4. How can we make MS prevention a reality?
  5. What is smouldering MS and is it treatable?
  6. How are we managing MS during the COVID-19 pandemic?
  7. Will I be able to have a coronavirus vaccine when one arrives?
  8. Etc …..

These topics are not fixed in stone. If you have any suggestions let us know. Do you have any problems with us running these webinars? Would you be interested in attending? How do you feel about having to donate to attend the webinars?

For those of you interested the following is Prof G’s planned marathon route and if you want to make a micro-donation towards the study please click on the link below.

26.32 miles of bliss or hell

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.

25 comments

    • Noted. This topic always comes up. The real question is “have we over-promised on the potential of remyelination therapies”?

  • Are the mouse doctors going to help you with your effort? Are they going to man the watering stations? Good luck. Will we be able to track your run online?

    • Re: “Are the mouse doctors going to help you with your effort? Are they going to man the watering stations?”

      No. The NYC marathon is virtual for a reason, i.e. to stop crowds forming and to maintain social distancing.

    • Re: ” Will we be able to track your run online?”

      Maybe. I think my Garmin GPS tracker does allow this to happen. I have never used this function, but I will give it a go.

  • Why are your own colleagues not supporting this fund raising effort? Is this a one-man show? It makes me wonder if this is really a team effort. The absence of their involvement is very telling 🙁

    • Dr Ruth has promised to do something as well. And I am sure I can cajole MD1 to get on his cross-trainer and do a 10km or half-marathon as well. It seems as if fundraising is like research; it is a slow process 😉

  • Well done Prof for taking on this suggestion. I for one would be happy to contribute further in order to participate. I am shocked at the poor total though, for such a noble cause. I can put it on the various forums and facebook groups etc to try and drum up some support but i dont want to overfill your guest list. How many places were you thinking of making available? On the content list my only comment would be that people will want to go away from the webinar feeling hopeful and positive, so please just to bear this in mind when covering smouldering MS. Another suggested topic – how to fight for the most effective DMT? having read way too many MS stories than is healthy over the past year, i am still surprised by the number of patients on the CRAB drugs or on no therapy at all. I suspect that for many it is a case of following the advice of their neurologist as the respected expert and I was guilty of this too in the past. Sign me up….

  • There is a doctor in the US named Zubin Damania (ZDogg) who does something similar. He has monetized his content while still making it free to access, for the most part. I would suggest checking out his structure.

    • Our aim is not to do this longterm, just to raise money to support a time-sensitive research project. Our University has stopped us using other sources of income for this kind of project and the funder who was going to fund this study pulled out because of the financial circumstances as a result of COVID-19.

      • So has the University stopped you from the pursuing the idea of allowing us to get tested with your antibody assay for a small donation, in order to raise
        funds (ref Blogpost #MSCOVID19: Dropping Dead 30/9/20) ?

        • No, we have almost enough money in hand (£10K) to get the first phase started (recruitment and samples collected for the cross-sectional study). We will need to raise the money for the lab consumables and the second phase, i.e. longitudinal study, going forward. I may just have to run a double-marathon to that; one on Saturday and a second one on Sunday 😉

  • Prof G,

    Timing was against you for this fundraising effort. The MS Society is seeking to raise £100 million to help provide treatments for everyone with MS. The MS Trust has an emergency appeal as does MS U.K. Dr Coles recently fundraised for Cure Parkinson’s. The cancellation of the Marathon and other fundraising events has hit charities hard. I’ve lost track of the number of requests I get from friends, neighbours and family for a donation to their Just Giving page. While the term micro donation may look appealing, it’s not micro if you are donating £10 to a dozen fundraising activities within a couple of months. MSers as you know often loose their jobs and are on sickness retirement or state benefits. The MS Society appeal is also more appealing to me as it may (long shot) deliver something of benefit. My friend works for a major charity and they focus on high wealth individuals. With your SA connections I would point to the mining companies. Some of the top dogs are billionaires.

  • I would be happy to pay a small fee to participate in a 30-60 minute webinar. Particularly if it further supports your fund raising goal.

    May I suggest a session on describing the different DMTs, the tier in which each is classified (low/moderate/high/off label), and their mode of action. A webinar hosted by MS patients or with presentations/stories told by MS patients would also be great.

  • Aww fundraising not easy in today’s covid world 🙁

    Are you allowed to ask industry (pharma) contacts? Or is that not allowed?

    When is your planned marathon? You’ll smash it! Seriously jealous, good luck and give us all a thought as you head home 🙂

  • Seriously disappointed at the low number of donators when time is of the essence. I plan to run to my MRI tomorrow and that’s a mere 4.1miles from the railway station. Should have got sponsored. What if we mildly affected ones ran half marathons for a tenner. I’m in my 70s so 13 miles is a bit much for me. But really Prof G; good luck and hope your hip lasts out.

    On the subject of webinars, I’m desperately seeking answers to why my former profs in the SW and in Brittany both told me my depressions were not associated with my MS. Is it really possible to say that when the preponderance of depression in pwMS is double that of the general population? A webinar would help unscramble why they were both so categorical about it.

  • I keep thinking of the idea that Barts MS could have a charity eBay page, or similar.

    I have a few items I would contribute, that could be sold and the proceeds go to this study.

    • The MS Society, MS Trust and several other MS charities have their own eBay charity web pages, with items listed for sale.

  • Could we collectively (as PwMS) contact the Barts Charity, the hospital charity? Which I am assuming you have applied for a research grant or transforming patient care grant, and ask them to consider/reconsider even partially funding this study?

    • It wasnt the Barts Charity that withdrew the funding, but it seems they are funding a 5,000 person vitamin D trial….I have to ask how many vitamin D covid-19 studies do we need.

      • Ok thanks. What about applying for funding with the Barts Charity? According to their website, they have a round open until 30th Oct to apply and a ten week turnaround to let you know if you are successful.

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