Scientists to run three marathons to raise funds for vital MS research
A dozen multiple sclerosis (MS) researchers are to collectively run three marathons - nearly 80 miles - to raise money for charity at this year’s Edinburgh Marathon Festival (EMF).
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Three teams of four researchers, from University College London (UCL), will each complete The EMF Hairy Haggis Team Relay virtually for MS Society UK, to raise funds for vital research taking place in Edinburgh, London and across the UK.
The teams includes twelve nurses, doctors and professors who have been working on trials that could lead to a greater range of treatment for people affected by MS.
Dr Tom Williams, a clinical research fellow at UCL, who is currently working on the landmark MS-STAT2 trial, which includes a trial site in Edinburgh, is one of the scientists taking part.
The phase three trial is exploring whether simvastatin, an inexpensive treatment currently used to treat high cholesterol, could slow or stop disability progression for people living with secondary progressive MS.
Dr Williams said: “As a junior doctor getting into research, you’re quite naive to the role of funding initially. But when you get involved, it becomes very clear that to do trials and research well, it’s time consuming and expensive.
“After working in research for a couple of years, the penny really drops that without people raising the funds, and the MS Society doing all of the work they do for MS research, there wouldn’t be any progress.
“It’s really rewarding to be working on the MS-STAT2 trial because there aren’t many treatment options for secondary progressive MS. Siponimod was the first treatment to be approved for over 15 years and approved for the NHS in Scotland last year, and it is only helpful for a minority of people with secondary progressive MS.
“So there’s definitely a big unmet need with treatments for secondary progressive MS.
“There’s a quite large team working on the MS-Stat2 trial, around the UK there are up to 100 staff working at any given time, so a lot goes into making this trial possible.”
MS is a neurological condition which damages nerves in your body and makes it harder to do everyday things, like walk, talk, eat and think. It's different for everyone and can be relentless, painful, and disabling.
More than 15,000 people in Scotland have MS, one of the highest rates of the condition in the world.
Dr Williams added: “It was my colleague Dr Alberto Calvi who first mentioned taking part in EMF.
“We all keep reasonably fit in our team, so Alberto was thinking the relay would be a manageable challenge for us with some training.
“The challenge just snowballed from there and now we have three different teams of researchers taking part.
“Our main approach to training has been to base it on some low level competition between the research nurses, doctors and professors. It’s worked well as a way of getting everyone involved.
“With the pandemic, it’s been good to have some positive motivation to help us get active again.
Morna Simpkins, director of MS Society Scotland, said: “We’d like to give a massive thank you Dr Tom Williams and the fantastic team of researchers taking part in this year’s Edinburgh Marathon Festival virtually.
“Not only are the team working incredibly hard to ensure MS research can continue during the pandemic, but they’re also making the time to support the MS community by raising vital funds too.
“We are incredibly proud to be the UK’s biggest charitable funder of MS research and to be co-funding the MS-Stat2 trial because we know what it could mean for people living with progressive MS.
“There are now over a dozen licensed treatments for people with the relapsing form of MS, and some emerging for early active progressive MS – but there is a huge unmet need for treatments that can slow or stop the rate of disability progression in the advanced stages of the disease.
“We have never been closer to stopping MS, and we believe treatments that slow or stop disability progression are a very real prospect.”
Stephen Ritchie, from Edinburgh, was diagnosed with MS in 1997 and has been taking part in the medical trial for two years.
The trial is a double-blind trial, meaning half the participants will take the drug and the others will be on the placebo.
He said: “I was uplifted and hopeful that the trial was taking place and, honestly, desperate to take part in it.
“As someone living with progressive MS, it’s so important that trials like this are happening. To have the chance to be a part of the trial was immense.
“Physically, my walking isn’t as good as it was but I’ve definitely noticed improvements with my cognition. I don’t know if I’m taking the drug or I’m on the placebo. But I’ve played chess on and off for most of my life and since being on the trial my score has gone up by 600 points.
“You’ve got to be able to concentrate, for sometimes a couple of hours at a time, so to see such a big improvement in my chess grading has been really significant.
“When playing chess, you wouldn’t normally expect to beat someone who’s just 200 points above you.
“It may not be this drug, it may not even be the next drug, but we will get to a point where there is a drug to help stop disability progression.
“And when that does happen, there would be no words to describe it. It would mean so much to be able to turn things around for people with progressive MS and have a treatment that stops your MS getting worse.
The MS-STAT2 team are also looking for people with secondary progressive MS, and based within travel distance from Edinburgh, to take part in the trial.
If you’d like to find out more, visit: www.ms-stat2.info
If you’d like to support Dr Tom Williams and the team of researchers taking part in Edinburgh Marathon Festival, you can do so on the Just Giving page.