Newly discovered biological process could help repair MS damage

Researchers say previously unidentified feature of myelin could pave the way to new treatment options

Researchers in Edinburgh have discovered that myelin, the protective coating surrounding nerves, which is damaged in multiple sclerosis (MS), could potentially repair itself instead of being lost, thanks to a newly discovered biological response.

This might offer a significant new opportunity to help slow, stop or even prevent degeneration in MS and other conditions like Alzheimer’s disease. 

In MS, the immune system attacks myelin in the brain and spinal cord and disrupts messages being sent around the body. This impacts how people move, think and feel. While myelin loss is a hallmark of a range of conditions, there are still no treatments that can replace damaged or lost myelin.

Until now, research has been focused on regenerating new myelin after it has already been lost. But a team from the MS Society Edinburgh Centre for Myelin Research at the University of Edinburgh, led by Professor David Lyons and supported by international collaborators, has shown that when myelin is first damaged it undergoes a dynamic swelling phase.

This can, in principle, be followed by repair, rather than myelin loss. This potentially offers a window of opportunity to intervene before the myelin completely breaks down. 

Historically, although this myelin swelling had been observed, it had not been investigated in detail, as researchers thought that it might be an artefact of the way brain tissue is preserved in the lab. But this new study took advantage of advanced technology to observe live zebrafish and tissue from mice and humans who lived with MS to follow what happened to damaged myelin over time.

The team showed that this swelling is in fact a natural process in the body that can be followed by repair of the damaged myelin, and thus one that could be a critical step in the body’s fight to prevent complete myelin loss.

This suggests that the nervous system has a powerful – and until now unrecognised – ability to withstand early myelin damage. 

Professor David Lyons, Co-lead of the MS Society Edinburgh Centre for MS Research, at the University of Edinburgh, says: “These findings suggest that intervening during this early swelling phase could protect myelin before it is lost, offering us the opportunity to explore potential new treatment routes that could complement current treatments.

“For decades, scientists have focused on remyelination, the process of rebuilding myelin once it is already lost. This continues to hold promise. But now that we have this new avenue of exploration, it could be the start of something else very special.”

Over 150,000 people in the UK live with MS, with 135 diagnosed each week. More than 17,000 people with MS live in Scotland. The MS Society is the largest charitable funder of MS research in the UK. Its research has helped drive forward treatment options and dramatically improved public understanding of the condition.

The University of Edinburgh is home to one of Europe’s largest groupings of neuroscience researchers investigating the nervous system in health and disease. This includes one of two MS Society-funded Centres of Excellence in MS research.

Work at the Edinburgh Centre for MS Research, co-led by Professor Lyons and Professor Anna Williams, spans investigation of fundamental biological processes relevant to MS, drug discovery to identify treatments for MS, through clinical research and supporting clinical trials in people with disease.

Dr Emma Gray, Director of Research at the MS Society, says: “We know that the body has the ability to regenerate new myelin after it’s lost. But this study shows that existing myelin can sometimes self-heal before it’s fully lost, a process we hadn’t identified before.

“It doesn’t replace current strategies, but it adds another potential way to protect myelin early on. MS can be debilitating, exhausting and unpredictable and for tens of thousands of people there are still no treatments that work for them.

“There’s still a lot to learn, but discoveries like this are essential to help people with MS in the future.”

To read the full research paper visit: 

https://www.science.org/doi/10.1126/science.adr4661

Letters: Stop MS Appeal

Dear Editor, 

Ten years ago, the MS Society launched the Stop MS Appeal – a campaign to raise £100 million for life-changing multiple sclerosis research. 

This came at a time when I was coming to terms with my own MS diagnosis , and hearing about their ambitious goal gave me much-needed hope. Now they have just two months of the appeal to go – and £1.5 million left to raise. 

I was lucky to be able to start on a treatment that helps me manage my MS, but for thousands of people there are still no treatments that work for them. This winter people with MS across the country are writing letters to their younger selves and loved ones about the unpredictability of life with MS. And about hope for the future. These letters show how important is it that we reach the £100 million target, so I wanted to write my own. 

So far, the money raised by generous supporters has funded the world’s largest ever academic-led trial for progressive MS, and shown that repairing myelin – a potential gateway to slow, stop, or even reverse disability – can be achieved. 

I hope your readers will consider helping us write an end to MS, for everyone. 

Kadeena Cox OBE – Paralympic gold medallist and MS Society Ambassador  

Free children’s book launched for families living with multiple sclerosis

Edinburgh parents helped develop the book, which supports adults to discuss MS with their children

A free children’s book aimed at supporting families to discuss multiple sclerosis (MS) has been launched by the UK’s leading charity for people affected by the condition.

The MS Society’s ‘What is MS to me?’ book features Tingo, a nerve cell, who helps young children understand MS with kindness, curiosity, and play.

The national charity created the book alongside a group of people living with MS and healthcare professionals including Dr Alison Thomson from Queen Mary University of London. Playful illustrations are provided by Margie Sturton.

There are around 150,000 people living with MS in the UK, more than 17,000 of whom live in Scotland, and 135 people are diagnosed each week. Many of these will have children or go on to have children in the future.

The MS Society found that outside of medical outreach programmes like Digesting Science, there’s was little available for children in the UK to help them understand and accept an MS diagnosis in their family.

Tingo guides readers through what they know about MS and encourages them to ask questions and make notes and drawings. A limited-edition Tingo toy was given away with some of the first books sold after its launch on Monday 28 July. The Tingo soft toy is a safe haven for children to return to during conversations about MS. Readers can pick Tingo up and keep them close for comfort and reassurance.

Robert Oldham, 45, from Greenbank, Edinburgh, was diagnosed with MS in 2005. He was part of the group of people who helped create ‘What is MS to me?’

Robert says: “As the father of three kids I know how important it is to explain MS to children in a simple, non-scary way so that is why I wanted to help create something that fitted this.

“I’ve had MS for 20 years and our eldest is 15, so all the children have grown up knowing that daddy has MS, but that’s just a badge. They don’t necessarily understand what that means. They know that I get tired, and can’t walk that far so being kids, they just accept that.

“The book has been great for my youngest who’s nine. We read it together and then I ask her if she has any questions she wants to ask. She loves to read and found the book engaging and helpful.”

Sian McSorley, 57, from Corstorphine, Edinburgh, was also involved in the production of the new book. She was diagnosed with MS in 2017 and her symptoms include fatigue, pain and cognition issues.

She says: “From my own experience I wasn’t sure how to explain MS to my daughter without frightening the life out of her. I couldn’t find anything that could help me with that.

“Being part of the group was a great opportunity to get Cara-Maria involved too. She was able to help with the information and designs, and it really helped to normalise MS for her a little.

“We talk about MS quite top level, that it’s something that makes me tired and she accepts that. But this book will be great to explain what else can happen in MS. It’s great that we can also share this resource with other people.”

The MS Society is the UK’s leading charity for people affected by MS. For 70 years it has been at the forefront of support, research, and campaigning to improve the lives of people with MS. 

Gavin Atkins, Executive Director of Services and Support at MS Society, says: “We worked with an amazing group of people living with MS to create this book. We found that there was a need for families experiencing MS to have something tactile to help explain and explore the condition.

“Most people are diagnosed with MS in their 30s or 40s and many of those will already have children or be thinking about starting a family.

“We’re proud to have created this free resource to help adults have what can be difficult conversations with the children in their life. We hope this book and Tingo will be something families can come back to time and again to learn more about MS and make it easier to talk about.”

You can order your free copy of ‘What is MS to me?’ at :

www.mssociety.org.uk/tingo

A Step Too Far: Scottish Government must heed report on disability benefits, say Greens

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Briggs pledges support for Kiss Goodbye to MS campaign

MS Society Scotland were in the Scottish Parliament during Multiple Sclerosis Awareness Week (23 – 29 April) to raise awareness of the important role research plays in the lives of people affected by MS. Continue reading Briggs pledges support for Kiss Goodbye to MS campaign