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 the U is a wo hy rld W in MS rese er ar ad ch le

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 millionL 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 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 areU 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. While person’s risk of developing MS. smoking can speed up how fast your the reasons for this aren’t clear, we A study found that deaths from MS disability progresses. People with MS do know that people who are were much higher among people who smoke may see their MS develop obese tend to have lower levels of whose last job was in the armed forces. from relapsing MS to secondary vitamin D, and higher levels of But the research was limited, as it only progressive MS earlier than people tissue inflammation. Both of these looked at someone’s last job rather who don’t smoke. are risk factors for developing MS. than their career. The study also didn’t Of course, not everyone who is make any suggestions about why an obese will get MS, and only a increase in deaths was found. fraction of people with MS are or Another study found that exposure have been very overweight. to solvents, such as paint and varnish, could be a risk. People who had genetic risk factors plus a history of smoking and had been exposed to solvents were 30 times more likely to develop MS than people without any of these.

Read more about the causes read of MS on our website: mssociety.org.uk/causes UK MS Register

MS data revolution You can now use the UK MS Register to better track your MS

y sharing their experiences Track your MS based on the questionnaires they of MS with the UK MS We recently improved the register by completed. Youy can also track how Register, thousands of making the website clearer and your reported symptoms have people are helping us introducing a brand new ‘My MS’ hub. changed over time. This information improveB MS services and MS research This allows members to get feedback can be useful when talking with your for everyone. GP or MS specialist, especially if you By telling us what it’s really like to don’t have frequent check-ups. live with MS in the UK, you’re providing the evidence for us to What the experts don’t know campaign for better care and support The UK MS Register is also the first and guide our research. You've done database in the world to combine this by answering over 400,000 information from people with MS questions since it launched in 2011! with their clinical data. Over 40 NHS Photo: Amit Lennon hospitals are currently taking part. That makes it a unique source of Share your experience today information for researchers around the world who want to understand My MS My Needs is one of the most importantly, where how clinical data, collected by largest surveys of people affected improvement is needed. doctors, relate to your symptoms by MS in the UK. It gives us a The next survey is open until and experiences of MS. Only by snapshot of people’s experiences, Friday 31 May, and we’d love for bringing together scientific expertise and ask if you're getting the you to add your voice. You can and the real life experience of people treatments, services and support give your answers online at with MS can we answer these you need. ukmsregister.org/landing/ questions. The results are invaluable for our mymsmyneeds or get a paper Find out more about campaigning work – highlighting copy from our Supporter Care join the UK MS Register at where services work well, and team on 0300 500 8084 ukmsregister.org

mssociety.org.uk Research matters 7 The immune system

Photo: David Baker

B CELL LESIONS

Why B-cells are on the A-list Research network member Lyndsey Shellard interviewed Professor David Baker and Dr Klaus What are B cells? Schmierer from the Blizard Institute about their The immune work on cladribine, a drug that targets B cells system is made up of many different cell types. These include B database of microbes that the nerves. These antibodies then tell cells and T cells, which can 'talk' immune system has previously other immune cells to attack myelin. to each other and team up to encountered and destroyed. But new research suggests that fight infections. cells can also directly activate B cells are a type of white blood What is their role in MS? T cells in the brain or the blood, cell formed in the bone marrow. B cells are not normally found in the causing inflammation and further They protect us by creating central nervous system (the brain nerve cell damage. antibodies that can help kill off and spinal cord) except during infection. infections. But in MS, something goes Are there disease modifying Not all B cells are the same. Some wrong and triggers them to enter the therapies (DMTs) that can stop regulate the behaviour of other brain when they're not needed. B cell damage? immune cells while others produce Initially it was thought that B cells Historically, it was thought T cells antibodies designed to recognise were only causing damage by were the major problem, because particular microbes. Another group making antibodies that target the one of their jobs is to kill infected act as ‘memory cells’, holding a protective myelin coating around cells. But now we see that drugs that

8 Research matters Spring 2019 The immune system

Do B cells also cause people who use wheelchairs. progression in MS? Cladribine is already licensed to stop We know that when B cells enter the relapses and slow disability brain, they can live there for a long progression in relapsing MS, but we time, making more antibodies and need a proper clinical trial to new ‘memory’ B cells. This can demonstrate that it’s safe and effective stimulate other cells in the brain to for people with advanced MS. produce toxic substances, resulting To see other drugs in the pipeline in a cycle of damage seen in for progressive MS, turn to page 16. progressive MS. What are your hopes for Can any DMTs help people with the future? progressive MS? The more specific we can make Beta interferon is licensed to treat a drug to target different cell people with early secondary types, the fewer side effects we progressive MS, but only those who expect there to be. are still experiencing relapses. One day we may be able to offer There is no evidence it can help with really targeted therapies, which are progression. taken for just a short time. We could A B cell depleting drug called then add in other treatments, such (Ocrevus) has shown as neuroprotective ones or drugs some benefit for early primary that boost myelin repair, as they progressive MS, but it’s not yet become available. available on the NHS . We’re also keen to see if cladribine can help people who currently have Find out more about no treatment options – those with read different immune cells primary and secondary progressive and how they are target B cells are also effective (see MS. In particular, we believe controlled by DMTs at information box). cladribine could slow progression mssociety.org.uk/warriors So we’ve been looking again at and help arm and hand mobility for the biology of MS and how DMTs work. It may be that the underlying problem is with B cells calling other Disease Modifying Therapies (DMTs) immune cells into the brain, leading The following DMTs specifically target B cells in MS: to inflammation and destruction. Cladribine (Mavenclad) directly targets B cells and T cells in the brain. We’re personally excited about (Lemtrada) is an antibody that kills B cells and T cells to cladribine because it works on stop them entering the brain. B cells and T cells directly in the Ocrelizumab (Ocrevus) is an antibody that targets B cells for brain, rather than just in the blood destruction, but doesn’t enter the brain. Rituximab (Rituxin) is an or immune tissues. That means we older version of this treatment but is being used and tested in some can target the ‘memory’ B cells that countries where ocrelizumab isn’t available. live in the brain, and hopefully reduce the cycle of inflammation. mssociety.org.uk Research matters 9 Pain Management

How exercise can help fight pain in MS A lot of people with MS experience pain as a symptom at some point. Research Network member Linda McGregor spoke with neuro-physiotherapist Rachel Flinn to find out why exercise could help

inda has Do we know what causes be a side effect of drugs, linked to always loved pain in MS? another health condition not related exercise. A lot of people with MS experience to MS, or caused by Before she pain at some time. Pain can be one internal symptoms, wasL diagnosed, she of the most difficult symptoms to such as a bladder was a keen runner both describe and manage. It can be infection. and now likes to keep as exhausting, impacting on your active as possible with the help ability to do everyday activities. Can exercise of her dogs and golf. Pain may be caused directly due to reduce pain in MS? Rachel Flinn (pictured right) nerve damage (neuropathic pain), or There’s less research around whether works at the MS Resource Centre indirectly, due to other exercise can help with MS pain in Belfast. MS symptoms compared with other symptoms like (musculoskeletal pain) fatigue, where the evidence is strong. – see box opposite. But a recent review of previous Pain could also clinical trials concluded that exercise may be able to help. Researchers in Australia looked at the results of ten clinical trials involving 389 people in total. Different types of exercise were studied, including aqua aerobics, walking, and resistance exercise. Though it wasn’t a huge effect, results

Photo: Colin Baldwin Photography Ltd Pain management

suggested that feelings of pain were different types of MS pain. personal trainer to develop a series lower in the exercise groups Whether it’s neuropathic, of videos designed to help you compared with the control group. musculoskeletal or something else, exercise whatever your level of But the researchers did stress that at the moment, trials don’t tend to mobility: mssociety.org.uk/ the size of the studies made differentiate and that could affect workout. Your local MS Society interpreting the results difficult, and the results. group probably has classes too. It’s that more investigation is needed. really important you find something What’s your advice to people you enjoy and can stick with. How do you think that exercise living with MS? could help manage pain? Think of it as being more active Exercise can help to relieve muscle rather than exercising - you don’t Take a look at Rachel’s stiffness and spasticity and the pain have to turn into a gym bunny or watch videos, created to associated with this. It can also run 10 miles a day! Incorporating help you manage prevent deconditioning – the gradual more movement into your daily life specific MS symptoms, loss of strength and fitness – which through gardening, stretching or including fatigue and spasms. can make existing pain worse. going for walks is a good start. mssociety.org.uk/exercises Recent research suggests that The MS Society has worked with a exercise might even change the wiring in your brain. Studies in mice have found that it promotes ‘neuroplasticity’ Causes of pain in MS – where a brain signal finds a new route to avoid damaged nerves. Neurogenic pain Musculoskeletal pain Excitingly, it’s now thought that The direct result of The pain in muscles exercise might increase the levels of damage caused by and joints that chemicals in the brain that promote MS to the nerves in comes from living the repair and regeneration of the brain and spinal cord with the stresses and damaged nerve cells. Studies are at (neuropathic pain) or lesions. strains MS places on an early stage, but it’s possible that Nerve damage might cause a the body. exercise could be a promising way range of sensations, from For example, difficulties to reduce pain associated with minor irritations to intense with balance could lead to MS-related nerve cell damage. sharp or burning pains. problems with posture, Examples include trigeminal putting a strain on joints, What further research is needed? neuralgia and the MS hug. ligaments or other muscles. As well as understanding more about what happens in the brain when we exercise, I think there needs to be more research into the

Photo: Colin Baldwin Photography Ltd

mssociety.org.uk Research matters 11 Over to you

Your questions answered Readers put our research team Do lesions in certain parts of the brain relate to the test with their latest to specific symptoms? MS science queries We know that distinct parts of the brain usually perform specific functions, but there is some flexibility around this. Different regions can take over other roles if needed. And What are the long-term unanswered questions. An 18 the brain has been shown to effects of disease year-long study found that physically adapt to nerve damage, modifying therapies (DMTs)? treatment with a DMT seemed to ‘bypassing’ the problem areas, in a Can they stop MS progression? reduce the number of people who process known as neuroplasticity. Evidence from MRI scanning shows went on to develop secondary Taken together, this means that that even at the earliest stages of MS, progressive MS. But there are other although damage to nerves (lesions) nerve damage is happening in the factors involved that could influence in specific areas is more likely to brain. And once nerve cells are lost, this, like age of MS onset, how early cause certain symptoms, it’s far they can’t be replaced. So treating people started treatment and the from definite. MS as early as possible is vital to type of treatments they had taken. The largest part of the brain, the improving long term outcomes. There remains a question as to cerebrum, controls cognitive skills DMTs aren’t a cure for MS, and how intensive early treatment such as attention, memory and they won’t undo any permanent should be. A cohort study published emotions. Lesions in this area can disability. But they are able to slow in 2018 suggests that the more cause cognitive dysfunction, with MS progression. the pattern of cognitive decline Long term studies found that people related to where the lesions are who took part in early trials of the first within the cerebrum. Certain lesion DMT lived longer, compared with sites can also predict the type of people who started treatment later. bladder dysfunction someone with And long-term follow up from the MS may experience, while others early trials showed that have been associated with after 5 years, people who were depressive symptoms. treated with the drug had a lower The spinal cord contains nerves level of disability compared with those that control movement, and so initially treated with the placebo. damage to this part of the central As to whether DMTs can nervous system can result in loss of completely stop MS from mobility. progressing – there are still a lot of

12 Research matters Spring 2019 Over to you

effective but higher risk the early And excitingly, another drug called If you’d like to talk in treatment is, the lower the risk of has been shown to reduce ask confidence about any developing secondary disability progression for some aspect of living with progressive MS over a people. The drug is currently being MS you can call our Helpline free minimum of four years. Turn to considered for licensing – we should on 0808 800 8000, or email page 16 to find out more about know the result by the end of the year. [email protected] DELIVER-MS, a clinical trial hoping Work is also underway to to give a definitive answer about understand more about the early aggressive treatment. underlying biology of progressive MS. Our research centres in What’s in the pipeline Cambridge and Edinburgh are for secondary helping find treatments that can progressive MS? repair myelin and protect nerve There currently aren’t any cells from further damage. treatments available for secondary progressive MS, but research is Find out more about our work bringing us closer to finding drugs to stop progressive MS: that can help. mssociety.org.uk/ Our UK-wide phase 3 trial, MS- progressing STAT2, is currently recruiting (see page 16 for details). This trial will give us the definitive answer about whether or not simvastatin can slow disability progression in secondary progressive MS. Results are due in 2023.

Photo: Simon Rawles

Getting the right advice Our research staff are not medical professionals. This page is designed to provide general information. If you have specific health questions, please talk to your MS specialist.

mssociety.org.uk Research matters 13 Fatigue

Photo: Amit Lennon

Tools DR SARAH THOMAS to manage your fatigue Research Network member Sarah Rees or those of us living with MS, caught up with Dr Sarah Thomas fatigue is often about proven ways to handle MS fatigue the most debilitatingF symptom. It’s invisible, difficult to treat, and can have a big impact on work. But life is programme called FACETS, with fatigue. There are drugs available, about more than work, and fatigue designed to help those with MS but they don’t work for everyone and can also greatly reduce quality of life better manage their fatigue and get come with side effects.’ ‘There was by leaving little energy for fun. more out of life post-diagnosis. some early evidence that cognitive Thank goodness then for people behavioural therapy (CBT) could help, like Dr Sarah Thomas. She and her Developing FACETS so we started developing what has colleagues at Bournemouth Sarah explains: ‘When we started out, now become FACETS.’ University and Poole Hospital have we saw there was a gap in the market The FACETS (Fatigue: Applying spent almost a decade working on a for psychological interventions to help Cognitive behavioural and Energy

14 Research matters Spring 2019 Fatigue

differently: ‘We’ve found the fact that FACETS is delivered in groups really Going digital: helps people open up, and perhaps realise that the guilt they feel for taking FACETS online a break is not needed – you’re not We’re working being judged!’ with Sarah and her team to International success create an online FACETS is now being adapted and version of FACETS, giving used across the world, while the MS everyone the chance to access Society is helping the course to be this fatigue management tool. rolled out nationally. Guided by people living with There’s also ongoing work to create MS, we’re creating six online a digital version of FACETS that modules that recreate the people can use through the MS original programme, allowing Society website (see information users to understand their box). fatigue and uncover helpful What was initially a small project ways to manage it. The online exploring psychological interventions course will be launching later for fatigue has mushroomed, much this year. effectiveness Techniques to lifeStyle) to Sarah’s delight: ‘When we started, programme focuses on helping those I really didn’t envisage that this with MS make lifestyle changes to programme was going to get to optimise the energy they have. where we are now. I think it’s worked could she offer? It blends energy effectiveness so well because we’ve involved In addition to setting realistic techniques with cognitive people with MS right the way expectations, Sarah stresses that ‘it’s behavioural strategies, getting you to through the process. We’re designing important that people are kind to think about how best to use your something that people want.’ themselves and give themselves energy reserves, and what’s stopping permission to rest.’ you from making changes. Making a difference She also urges those with MS to Part of the process involves setting Sarah is thrilled to have helped create make sure they aren’t just using up realistic expectations and recognising something that improves the lives of their energy on work or chores. ‘You that it's better to manage fatigue than people with MS. ‘People have must still leave energy for doing the to fight it. ‘It can be challenging for described FACETS as life-changing, things that matter to you, and that you people, but we encourage them to allowing them to get their lives back. enjoy. Life has to be rewarding too.’ start small and make little changes, That counts for so much.’ such as understanding your triggers While she admits that there is ‘no and recognising what your fatigue magic wand for fatigue’, Sarah is If you're interested in levels are,’ says Sarah. confident that offering courses like learn FACETS please ask The programme has also been FACETS right from diagnosis could your MS care team or important in helping people accept make all the difference to those living local group, or email their MS fatigue, and give themselves with MS. But for those who can’t yet [email protected] permission to approach things access the programme, what advice mssociety.org.uk Research matters 15 CLINICAL TRIALS

Testing, Taking part testing … Stephen Ritchie

has secondary IStock Photo: progressive phase 1,2,3 MS and is participating in the MS-STAT2 trial Bigger, faster and smarter clinical trials mean ‘Just being on the trial has we’re at the cusp of a revolution in testing new changed my outlook and I feel I can take part in life again. It’s treatments that could help everyone with MS made simple things like doing the dishes a possibility and t’s a long journey getting a new whether that’s down to a Research Pipeline treatment into the clinic. Ideas psychological boost or not, it Pre-clinical studies need to be proven in the lab, and can only be a good thing.’ Laboratory research using cells clinical trials need to show a and animals treatmentI is safe and effective, Phase 1 clinicial trial before a drug can be licensed for use. for progressive MS. Over 1,000 Is it safe? What dosage? The process can sometimes take people will take part in MS-STAT2, Phase 2 clinicial trial up to 20 years from start to finish. testing to see if simvastatin can slow Is it safe for people with MS? Is Our challenge is to speed this up: to disability progression for people there a benefit? identify the most promising treatments with secondary progressive MS. Phase 3 clinicial trial and test them as quickly and efficiently Measure benefits and risks. as possible. We’re doing this through Smarter trials Compare to current treatments. bigger, smarter and faster trials. Last year, we got the disappointing Phase 4 clinicial trial news that none of the three drugs After licensing, check for long term Bigger trials tested in our MS-SMART trial slowed effects and possible wider use. In 2018 people started joining the MS progression. UK’s largest academic clinical trial But this ‘multi-arm’ trial showed

16 Research matters Spring 2019 CLINICAL TRIALS

us we can effectively test many A mega-trial for MS Right now we’re funding potential treatments for progressive It’s now time to bring all these underpinning studies to work out the MS at once. By doing so, we got the advancess together. We think that best way to choose the drugs to be results up to ten years earlier than the best way to find treatments for tested, what infrastructure is needed we would have done using a everyone living with MS is to set up and how to get the answers we need standard clinical trial set-up. a trial ‘platform’. We want to test quickly. These studies will finish in the Find out more at mssociety.org. many different drugs at the same late summer and then we’ll begin uk/multidrug time and involve as many people as establishing a UK clinical trials possible, with all forms of MS. platform for MS. Faster trials So we’re working with the UK’s We need to find faster ways to see if leading MS researchers, clinicians, and Find out more at: mssociety.org. a drug is working in a clinical trial. people with MS to make this happen. uk/trialconsortium By giving participants regular MRI scans, researchers hope to be able to detect early changes that give an indication of effectiveness before Current Trials ORATORIO-HAND trial Phase: 3 | Status: recruiting changes in disability are seen. And by looking at ‘repurposed’ MS-STAT2 trial Researchers think that ocrelizumab, which is currently licensed for drugs that are already used to treat Phase:3 | Status: recruiting relapsing and early primary other conditions we can skip phase 1 An earlier trial showed that the progressive MS, could also help safety trials, and move straight into cholesterol-busting drug looking at whether it’s effective for simvastatin can reduce brain people with advanced primary people with MS. shrinkage in secondary progressive MS. The trial will involve Our phase 2 trial to see if the progressive MS. This trial will test 1,000 people from multiple cancer drug bexarotene can help if it can also slow disability countries, including the UK. repair myelin will be completed in progression and will take six Visit roche.com/media/releases/ autumn 2019. years to give a definitive answer. med-cor-2018-06-14htm to find Visit ms-stat2.info to find out more. Inclusive trials out more about taking part. Disability progression is often DELIVER-MS measured using the Expanded Bexarotene trial Phase: 4 | Status: recruiting Disability Status Scale (EDSS), which Phase: 2 | Status: We know that DMTs work for relies on changes in mobility to recruitment complete relapsing MS, but this trial show how effective a treatment Bexarotene is already used to involving 800 people in the UK is. This means people with more treat cancer, but researchers and US will tell us whether it is advanced MS, who use a wheelchair, think it could also boost myelin better to start with more are often excluded from trials. repair in MS. The trial is looking aggressive treatments early or Using an alternative measure, called at people with relapsing MS whether to go more cautiously to the 9-hole peg-test, researchers are who are taking a DMT, but we avoid potential side effects of now seeing if DMTs can preserve arm believe repairing myelin will stronger medicines. and hand function for people who use help with both relapsing and Visit deliver-ms.com/ to find a wheelchair. The ORATORIO-HAND progressive MS. out more. trial was announced last year. mssociety.org.uk Research matters 17 Diet and nutrition

claiming benefits, but we generally only hear from those feeling well, not the negative experiences. The hunt To get a better understanding of the long-term effects on health – both good and bad – of a change in for an MS diet diet, we need clinical trials that last a long time. There is at least one study Research Network member Ghazia Ahmed in the US comparing the Swank and asks dietitian Dr Conor Kerley from the Wahls diet (see box right), which is exciting, but it’s only looking at the Dublin Institute of Technology if the food effect on MS fatigue. we eat can help manage MS Should I be following e know that healthy How important is a specific MS diet? eating is important, nutrition for MS? There’s no evidence that but have you ever Recent statistics following a specific diet is best wondered if following suggest that poor for MS. But some people find aW specific diet might actually help nutrition probably that following a special diet makes your MS symptoms? contributes more to a difference to how they feel, and death and disability in the general can offer a sense of control over an population than smoking or lack of often unpredictable condition. exercise. And it’s starting to play a Most experts advise on reducing bigger role in treating and preventing saturated fats and increasing chronic conditions like diabetes, vegetables, fruit and healthy fats. obesity and some cancers. Before considering a special diet, There currently isn’t much data on you should talk to your GP about a whether nutrition is a problem in referral to a dietitian. Approach any people with MS. But we know nutrition change with care to make sure that is important and a healthy diet is your diet isn’t too restrictive and beneficial for everybody. that you’re still getting all the nutrients needed. An unbalanced Why is research into diets for MS so tricky? Nutrition is notoriously difficult to study as it’s hard to accurately track what people eat. There are many online anecdotes Diet and nutrition

diet can make symptoms, such as fatigue, worse. Popular diets Swank Wahls What is ‘leaky gut syndrome’, The most well-known This is a modified and is it important in MS? diet associated with MS version of the Paleolithic The theory behind ‘leaky gut was designed by diet, with the addition of syndrome’ is that the cells in our neurologist Dr Roy Swank in more vegetables like cabbage, intestines become ‘loose’. These 1940. It is based on a low fat, mushrooms and onions. gaps let large molecules of food, red meat free diet. Evidence A small study reported including gluten, legumes and Evidence There have been a an improvement in fatigue with dairy, which should be kept in the number of small studies carried this diet, but the study also digestive system, enter the blood. out but these haven’t all been included other lifestyle changes Studies have suggested MS is well designed and had high and had no comparison diet. associated with a leaky gut. It’s not drop-out rates, making results known if this is a cause or an effect hard to interpret. Ketogenic of the condition, but having a This is a high fat, low leaky gut can increase levels of Paleolithic carbohydrate, inflammation in the body. This diet involves only moderate protein diet. The Wahls and the Best Bet diets eating foods we think The body burns fat instead of were developed with leaky gut our Palaeolithic carbohydrates as fuel source in a syndrome in mind. It’s an interesting (cavemen) ancestors had. That chemical state called ketosis, area of research but the evidence means no processed food or which is not without risk. around it is still quite weak. meat from domesticated animals. Evidence The evidence is You can hear more from Evidence There’s little research inconsistent and at an early Conor on twitter @ConorKerley. into whether this diet affects the stage in the context of MS. course of MS. Learn more about Overcoming MS read healthy eating and Best Bet This was designed in MS: mssociety.org. It focuses on removing 1999, by Professor George uk/dietbooklet “problem foods” Jelinek. It suggests cutting associated with leaky gut out dairy and meat, and reducing syndrome, and eating a variety of fat intake – particularly saturated fish, fruit and vegetables, nuts, fat. It also recommends taking seeds, and poultry. It also supplements, particularly of recommends having allergy omega 3 and vitamin D. tests to discover other foods that Evidence Research into this diet Photos: iStock Photos: should be avoided. has not provided conclusive Evidence There is very little evidence of its benefits. In research to back completely Melbourne, there is ongoing avoiding food types like legumes research into people following the and gluten. diet and whether it’s effective.

What the evidence says: there's lots more to discover, but you should be able to cover all your nutrient needs from a well balanced diet, with some specific supplements if necessary.

Research matters 19 Meet the researchers

Uncovering the mysteries of myelin repair We visited Dr Veronique Miron at the University of Edinburgh to find out more about her ground-breaking research

How did you get involved in What exciting MS research improve myelin repair. We hope that MS research? projects are you working any drugs we find could be used as I’ve always been interested in the on at the moment? treatments for MS in the future. brain and how it can change – My lab is really interested in finding You can read more about particularly in the context of out more about how we can repair Veronqiue's myelin research project conditions like MS. Growing up in myelin. Our bodies have an amazing here: mssociety.org.uk/activin Canada, a place where MS is very capacity to repair myelin, but we prevalent, I was aware of the impact know that as MS progresses, the it can have on people’s lives. I myelin repair process becomes less wanted to help. So I chose to focus efficient and damage accumulates. my PhD on understanding more In order to stop MS, we need to be about regeneration in MS. I’ve able to repair this damaged myelin. carried this forward to my own lab. A few years ago we found that a protein called activin-A plays a role What does a typical day in the in myelin repair. Since then we've lab look like for you? been finding out more about how it Every day is different, stimulating and works, by identifying the receptors it challenging! My work involves affects. Now, we’d like to test guiding my team to design whether existing drugs can also experiments and analyse the results. target activin-A receptors to I also spend time meeting with fellow researchers to discuss ideas, and reading published studies to learn about new research. It’s also important to share our work with the public and other researchers, so I often get out of the lab to attend talks Photo: Joe Mcgorty and present our work at conferences.

20 Research matters Spring 2019 Meet the researchers

I’m also currently supervising a Many breakthroughs in MS really talented PhD student. She’s research and treatment come from investigating proteins that are young researchers carrying out released by immune cells in the projects in the lab. My goal is that at brain called microglia. We’ve seen the end of a PhD, the student has that these proteins can also support contributed to our understanding of myelin repair, which is really exciting. MS, is motivated by research and Find out more about microglia has the skills and confidence to here: mssociety.org.uk/ pursue a successful career. myelintarget

What does being a PhD Meet our researchers watch and find out more supervisor involve? about the cutting edge It’s my job to guide my students to research that we fund carry out a research project, while on our YouTube channel helping them to become mssociety.org.uk/veronique independent and skilled scientists. The most rewarding part of being a PhD supervisor is seeing my students develop into confident, MYELIN motivated, and skilled researchers.

Photo: Ally Dillenburg

Research matters 21 Events

Coming to you Photo: Amit Lennon “It put a friendly face to the MS thing! The event had a good atmosphere about it.”

Hear about research at “The whole event gave events all around the UK me hope for the future”

very year, members of our to suit your needs. “It was good to see that research team pack their With more than one event a people with MS haven't bags and head off around fortnight across the four nations, we been forgotten.” the UK to talk to the MS hope to see you at one in 2019. communityE about MS research. We’ll be adding more dates over “We were a little nervous From evening talks led by a local the coming weeks. Enter your about going but we both group, to all-day events attended by postcode at mssociety.org.uk/local had a really positive day” hundreds of people, there’s an event to find events happening near you. “A truthful factual report about MS research: This year's Stop MS Annual Lecture is at 7pm on Wednesday the good and the watch 1 May. Hear from some of the UK's world leading MS bad results” researchers w about their plans to stop MS. You can watch live or catch up later at mssociety.org.uk/stopMSlecture

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