Castletown nurse taking part in landmark UK multiple sclerosis trial
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A Caithness nurse who was diagnosed with multiple sclerosis 11 years ago is taking part in a landmark UK trial which could improve life for people with the debilitating condition.
Sheila Geddes, who lives in Castletown with husband Graeme (52), is participating in the MS-STAT2 trial which will test if the inexpensive treatment simvastatin – currently used to treat high cholesterol – can slow disability progression over a three-year period.
Sheila has secondary progressive MS, a second phase of the disease which often results in increasing difficulties over time.
The 50-year-old, who experienced symptoms for many years before diagnosis in 2010, said: "MS primarily affects my walking due to balance and muscles cramps or spasms. I use two elbow crutches at the moment and sometimes a Zimmer if I’m tired and at home by myself – I think part of it comes down to fear of falling.
"Before the pandemic I was getting regular massage, which really helped, but that’s had to stop and I’ve felt the difference.
"I first heard about the MS-STAT2 trial because I’d done a trial before and, as a nurse, I know that research can be a great way of finding new treatments. So when I saw it on the MS Society website and this chance came up to be involved I absolutely jumped at it.
"In the past I’ve tried using different treatments like relaxants but it hasn’t worked for me, so getting the chance to try something else and contribute to finding new treatments has been good. I would hope the trial will slow down the progression of the secondary phase.
"It would be fantastic if something good came out of it. If they find out nothing from the trial then they are going down the wrong road, but if they find out something positive they will know they are going down the right road."
The MS-STAT2 trial is a double-blind trial, meaning half the participants will take the drug and the others will be on the placebo.
Sheila said: "I don’t know whether or not I’m on the drug or the placebo but being involved is very positive. Being part of something worthwhile is a great – and if it doesn’t help me then, fingers crossed, if it’s shown to be effective, it can help others."
The trial began in summer 2017 and will involve 1050 people with secondary progressive MS. It will take six years to complete and involve more than 30 trial centres across the UK, including the Anne Rowling Regenerative Neurology Clinic at the University of Edinburgh.
Sheila travelled to the clinic for tests and assessment and was due to go there twice a year during the trial, although that has not happened since the pandemic. Instead, she has spoken to the team on the phone while bloods have been taken by her GP.
"Everything is very well thought out, well organised – you’re very well supported and there’s some limited financial support for travel," Sheila said. "There’s no pressure, and you are free to drop out whenever you like.
"I’d really encourage anyone who is interested in taking part to take a look at it as it’s a great chance for people in the north to get involved in research."
Currently there is one treatment available in Scotland for people living with secondary progressive MS.
Siponimod was approved in 2020 by the Scottish Medicines Consortium for use on the NHS in Scotland. If this trial is successful, simvastatin could join it and broaden treatment options.
MS is a neurological condition which damages nerves in the body and makes it harder to do everyday things such as 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.
Morna Simpkins, director of MS Society Scotland, said: "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."
