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Research Matters Spring 2019 Contents Research matters The latest developments, innovations and achievements in MS research Spring 2019 • Issue 017 Hear from our experts on pain, fatigue and new treatments to stop disability and see... K is the U a wo hy rld W in MS rese er ar d c a h e l plus The causes of MS, your questions answered, MS diets and what the UK MS Register can do for you w Welcome Welcome to Research matters MS Society 372 Edgware Road, London, NW2 6ND ong term investment and some of the Tel 0300 500 8084 world’s best minds have put the UK at researchmatters@ the cutting edge of MS research. To date mssociety.org.uk the MS Society has invested over £218 mssociety.org.uk Lmillion in advancing MS science. And with your support we will continue to fund even more Editors breakthroughs in 2019. Lynn Duffy Our researchers are driving new trials into David Schley potential treatments and changing the way we Writers understand MS. In this issue, our supporters Ghazia Ahmed speak with leading scientists about the advances being made in how we manage Caitlin Astbury symptoms, stop disability progression and live better with MS in the UK. Ben Atkinson Professor David Baker and Dr Klaus Schmierer talk us through their ground- Lynn Duffy breaking B cell research in London on page 8, including their efforts to make Linda McGregor cladribine available to people with progressive MS. On page 14, Dr Sarah Sarah Rees Thomas from Bournemouth explains how her work has spawned a worldwide David Schley change in the way we approach fatigue management. And you can get the Lyndsey Shellard latest on diet and nutrition on page 18. With thanks to Turn to page 16 to learn more about clinical trials taking place across the UK. David Baker You’ll also hear about a project I’m personally very excited about - our new Sorrel Bickley clinical trial 'platform'. This is designed to speed up the way we test potential Katie Cavanagh new treatments and find ones that work more quickly. Rachel Flinn As always, we’d love to hear what you think about Research matters or if you’d Emma Gray like to be involved. You’ll find contact details on the left hand side of this page. Conor Kerley Susan Kohlhaas Veronique Miron Jo Quinn Stephen Ritchie Christopher Roberts Dr Susan Kohlhaas Jenny Robertson Director of Research Klaus Schmierer Richard Scholey Sarah Thomas The research network is a group of people affected and the MS Society Research Network by MS helping shape our research programme. contribute They also help decide what 'Research matters' and Designers write for the magazine. To find out more visit Redactive mssociety.org.uk/researchnetwork 2 Research matters Spring 2019 Contents Contents 04 Causes of MS MS risk factors 07 UK MS Register Track your MS 08 B cells and MS A new look at the immune system in MS 10 Pain management How exercise can help 08 B cells and MS 14 Managing fatigue 12 Over to you Your questions answered 14 Fatigue A global management programme 16 Clinical trials The latest search for effective treatments 18 Diet and nutrition What can help with MS? 18 Diet and nutrition 22 Research talks near you 20 Meet the researchers The researcher taking on myelin damage 22 Events Come and meet us If you’d like to talk to someone in confidence about any of talk the topics raised in the magazine, the MS Helpline is here for you. Call for free on 0808 800 8000, or email [email protected] Research matters is available as an audio download. For details, phone 0300 500 8084 or visit mssociety.org.uk/Research-Matters mssociety.org.uk Research matters 3 Causes of ms What actually causes MS? We don’t yet know for sure what causes MS, but it’s likely to be a mix of genes, your environment and lifestyle. What we do know is that developing MS is no-one’s fault nderstanding how we can Genetics Other autoimmune conditions prevent MS is one of our top There’s no single gene that will If you or a close family member has research priorities. We know definitely cause someone to develop MS, you’re more likely to develop that many different factors MS, but we know that having certain another autoimmune condition, such Uare involved. Ultimately, we hope we gene mutations can make it more or as Crohn’s disease, type 1 diabetes or can use this knowledge to make sure less likely. Most people who carry rheumatoid arthritis, than people fewer people have to live with MS in these risk factor genes won’t develop who don't. the future. MS. They still need to be exposed to It’s not clear exactly why this is, other environmental or lifestyle but it may be because different factors to trigger MS. autoimmune conditions involve the So far we’ve discovered over 200 same genes. genes that are linked to MS. Not surprisingly, as MS is considered an Connecting immune research autoimmune condition, many of them As well as a genetic link, research play a role in the immune system. suggests that different autoimmune conditions also share common underlying biological mechanisms. That’s why we've joined forces with two other charities to fund research into what links different autoimmune conditions. Photos: IStock 4 Research Matters Spring 2019 Causes of ms Our partnership with the type 1 And research shows that people diabetes charity JDRF and Versus who have moved to a new climate A unique history Arthritis will fund Professor Yanick during childhood tend to adopt the risk Crow, from the University of level of the country they move to. But if Lyndsey’s Edinburgh, to investigate immune people migrate later in life , they tend family has more proteins called interferons, and their to keep the risk profile of their country experience role across autoimmune conditions. of birth. than most His findings could help us unlock Despite these findings, we still don’t of living with vital information not only about MS, know if vitamin D supplements could autoimmune conditions. but of benefit to everyone living with prevent or treat MS. To find out more 'I have relapsing MS and an autoimmune condition. Find out about vitamin D, visit: mssociety.org. autoimmune thyroiditis. Until more at mssociety.org.uk/ uk/vitamin-d my diagnosis, I hadn’t heard of connectimmune autoimmunity. I knew of other Infections conditions in the family - my Environmental factors It’s long been thought that certain second cousin had rheumatoid Vitamin D bacterial or viral infections may be a arthritis and my great aunt had We know there’s a link between trigger for MS. Researchers haven’t systemic lupus erythematosus. vitamin D levels and MS, though more yet identified any infectious agent I studied biology at university research is needed to explain it. that definitely causes MS, but, there’s and realised then that there Vitamin D appears to play a protective growing evidence that certain could be a genetic link. Luckily, role against MS, particularly during infections could contribute to the thyroiditis is well controlled pregnancy and childhood. someone’s risk of developing the by medication, but it also In 2016, scientists found that children condition. causes fatigue, so I must be born with very low levels of vitamin D The most well-studied of these mindful that symptoms may were more likely to develop MS in later infections is the Epstein-Barr virus not always be MS. I have a life. Another study reported that (EBV), which causes glandular fever. better understanding now, so month of birth also plays a role, Most people come into contact with when my daughter became suggesting levels of sunshine during EBV in their lifetime (though may unwell, I knew she was showing pregnancy could be important. never experience symptoms), and so autoimmune symptoms and pushed to get her a diagnosis. She was then diagnosed with coeliac disease.' Chance of someone developing MS in their lifetime Autoimmune disorders The immune system is your body's defence against infection. Autoimmunity is when the immune system attacks normal 1 in 330 1 in 67 1 in 37 1 in 5 body tissues by mistake. In MS who grow who have a who have a who have an the immune systems treats the up in parent brother or sister identical twin protective myelin coating the UK with MS with MS with MS around nerves like a disease. That means 1 in every 600 people in the UK have MS Research matters 5 Causes of ms will carry antibodies to it. A number of studies have shown that people with higher levels of antibodies to EBV are more likely to go on to develop MS. And practically everyone with MS has come into contactwith EBV. In 2018, a small phase 1 trial found that targeting cells infected with EBV in the brain could help people with progressive MS. A phase 2 study is being planned in Australia and the US. Find out more here: mssociety. org.uk/immunotherapy Obesity Lifestyle In 2018, a study was published that Smoking found a link between obesity and Smoking can make you up to 50% MS. It showed that people who are Occupational hazards more likely to develop MS compared genetically predisposed to having a There is some evidence that certain with people who don’t smoke. higher body mass index (BMI) are occupational hazards can also impact a Studies have also shown that more likely to develop MS.
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