Barts-MS rose-tinted-odometer: ★★★★★
“Did you hear that Professor Giovannoni dropped dead after attempting to complete the virtual New York Marathon trying to raise money for a multiple sclerosis research project?”
“Prog G finally throws in the towel and arranges to see an orthopaedic surgeon about his failing right hip. His attempt to complete a marathon to raise money for MS research was one run too many.”
“Prof G’s kidneys finally pack-in after excessive use of non-steroidal anti-inflammatories in his futile attempt to complete a marathon and raise money for MS research.”
These are some of the comments I am getting back from my colleagues, who are concerned about my potentially foolish attempt to run a marathon. Please don’t be concerned about me I wouldn’t be taking on this challenge if I didn’t think I could complete it. As proof that I am getting close, I managed to complete a 20-mile run on Sunday; all I need to do is extend that by 6.2 miles in a few weeks time.
The reason for taking on this challenge is to raise money to complete a very time-sensitive research project that is very relevant for people with MS. We have developed an ultrasensitive GloBody assay to detect antibodies against coronavirus that can be run on blood spots that are collected at home and posted to our laboratory.
Our preliminary data indicates that our assay is more sensitive than the two commercial assays (Roche Diagnostics and Abbott laboratories) that are currently available via the NHS. The GloBody assay is detecting antibodies in people who are ‘antibody-negative’ on the commercial assays. This finding may be very important going forward and to help pwMS come to terms with their risk of getting COVID-19 and potentially help to detect antibody responses to any future coronavirus vaccine.
To borrow a metaphor we have an oven-ready study that needs to be done in the next month or two. We lost our funding when the charity that was funding this project realised they had a funding shortfall due to COVID-19. Prior to hearing this bad news, we had already been given the green-light by our research office and ethics committee to proceed with the study; this is why the study is oven-ready.
As our assay is now running and is closed to being validated would you be interested in getting yourself tested for a small amount? The result will then be sent to you and we would use the money collected from providing a service to pay for the service and to support the costs of the laboratory component of the MS seroprevalence study. Your thoughts, please?
If you haven’t done so already we would appreciate any microdonations so that we can start the study as soon as possible.
Thank you.
CoI: multiple
Twitter: @gavinGiovannoni Medium: @gavin_24211
I’ve made a micro donation to the marathon. It didn’t occur to me that I could be colluding in an unwise enterprise – please stay alive, Prof G! We need your blog here in the back of beyond 😀 I have Primary Progressive MS and would be happy to try the assay, if I am eligible,
Many thanks. What we are proposing to do is provide the assay as a diagnostic test to all-comers. The seroprevalence study will be separate.
Apart from the fact the Prof G is a hero… Would the assay be likely to detect antibodies in people who were infected in the Spring, before mass testing? I would pay good money to have my parents tested (who think they probably had covid then).
Re: “… detect antibodies in people who were infected in the Spring, before mass testing”
We suspect so, but as you know antibody levels drop with time. Our assay may be able to detect low-level antibodies for longer than the other assays.
MD
Symptomatic people have higher chance of having a response. We have some samples from people who were infected that long ago
If I can walk for an hour with my rollator then I have every confidence in you completing the marathon. Good luck. Microdonation on its way
How do we sign up?
Just made a small donation – good luck! I’d certainly be interested in being tested
Yes I’d be interested in being tested. I’ve just made a small donation, best of luck!
PwMS are all too familiar with doing things physically other people suggest maybe we don’t try so you go Prof G! Controversy will just increase the attention and the success of your endeavor
Count me in How much? Being tested Friday for my cataract op Mon.OK?
Have already made a (small) donation and good luck with the marathon and the research. Would certainly pay for an assay and take part in the research.
Referring back to a previous post is it likely that the NHS would check interferon NABs just to stratify your Covid risk? I was on it for a while, slowly progressing with small relapses so ?? NABs. Just doubt that my team would offer it.
Yes please!
Let me know as soon as I can sign up.
DOI – on ocrelizumab. HCP working in hospital ‘oop North
Dear Professor. I’ve been reading some of your research regarding benign MS after a long period of time. I’m sure you receive many messages like mine, but as a message of hope to others, I’d like to share my experience. I was diagnosed with MS at aged 21 after two optic neuritis episodes vía MRI. My 20’s saw a few additional optic attacks, some tight body bands and general wobbliness/fuzzy hands which I thought would paint my life and future. I was all set to go on beta interferon at aged 30 when I decided to reset my life. I quit my stressful job and went to work on a yacht in the Mediterranean for 6 months. To cut a long story short, I’m now a chef on a 42m yacht that travels the world. I’ve pretty much been in sunshine and humidity for the last 16 years, with no ‘attacks’ occasional finger fuzziness when very tired (I can often work around 15 hours a day for 6 weeks in a row) But nothing else. When not chartering I normally work an active 50 hour week. I’m fit, in shape and mentally driven not to Be beaten. I revisited my neurologist aged 33 to ask for another MRI (I’d already had 3 or 4) to check he hadn’t misdiagnosed me, he said it was not a misdiagnosis as the scan showed lesion activity. I’m fascinated now as I’ve been benign for 16 years in my mind. My aunt also has MS and whilst she has more episodes of symptoms she is similar in her lack of attacks. Anyway, I’d be fascinated to b involved in any long term study that might suit.
Best wishes
CG
CG Thanks for the comment. I edited the post to anonymise it. I suggest you use the search function on the blog to read the posts on benign MS. You may be doing well because you have benign MS, but you may also be doing well because your brain and spinal cord are compensating for the damage that MS is causing. Be careful we can’t repair the damage that MS causes at this time so our treatment approach is ‘early effective treatment’ to prevent damage and protect your brain and spinal cord reserve that you will need when you are older.
I’d definitely be interested in being tested. I have previously made a donation and wish you good luck and good weather!
Hi prof..
Nice to alway follow your write up on ms.. However, having a health diet along side fasting and excise. I found doe help. Just wanted your intake on the taopatch.. For ppl with ms.. Have you not tried to research this further as in plants for ppl. 🤫. Spk soon