For Helena Jidborg and George Pepper, getting involved in MS research began with personal questions about treatment and the future. Over time, they have grown to see it as a way to build hope, shape better care, and ensure everyone living with MS has a voice.
Their own journeys reflect that of the wider medical community. Today, people with MS are no longer simply research ‘subjects’, but are helping to build and guide projects with the potential to make the future a better place for everyone living with the condition.
Here, Helena and George talk to ECTRIMS Community Voice about their own experiences, how the landscape has changed over the last two decades, and why they would encourage others to get involved in research.
Getting involved in MS research
George was diagnosed with MS in 2004 after what he describes as an aggressive onset. Helena was diagnosed three years later, at the age of 29. Neither had a scientific background, but both found themselves drawn into the world of research in different ways.
For Helena, who started working at the UK’S MS Trust soon after her diagnosis, it began with curiosity. At the time, she explained, most MS treatments were injectables, but news was beginning to emerge about the first oral medications.
“I remember seeing the research news and thinking, ‘Oh, this sounds so much easier than an injectable,’” she says. “I didn’t know anything about how drugs come to market. I had done science at school, but this was completely alien to me.” As she started reading more, she became fascinated by how clinical trials worked, from laboratory research through to human studies.
Running the MS Trust’s Facebook group, which at the time included updates on upcoming trials, also exposed her to another side of research: one that looks at improving quality of life. “I realised research is not just about medicines,” she said. “It is not just about finding the next new wonder drug, but helping to make MS much easier to live with.”
George’s interest also started with questions. Faced with severe symptoms early on, he immediately wanted to understand which treatments were the most effective. “The motivation was completely self-interest,” he said. “I needed to understand what the best thing was for me.” Conversations with leading clinicians, however, surprised him. “These were people who are seen as leading lights, but they disagreed with each other.” This realisation, that lived experience matters, became central to how he viewed research from then on.
What it is really like to take part in a clinical trial
In 2009, George founded Shift.ms, an online MS community, and two years later, secured Wellcome Trust funding for a project called MS Reporters. It trained people with MS to become citizen journalists, and they then interviewed clinicians and researchers on the latest developments using their smartphones. “We produced more than 500 videos,” George said, adding that he was inspired by the thirst not just to receive information, but to be involved in the process.
Helena became directly involved in research when she saw a post about a remyelination trial in Cambridge. “I suddenly thought, ‘wow, this is me they’re looking for’,” she explained. “They were looking for somebody who was on a specific drug, who was in a specific age range, and who would be able to get to Cambridge. I thought ‘tick, tick, tick, that’s me’.” After an initial phone call and visit to the study centre, she signed up.
“They were so enthusiastic and it sounded so groundbreaking,” said Helena. “We have all these fantastic drugs that are reducing relapses, but if we could understand remyelination, that would be amazing.”
What impressed her most, however, was not the science but the atmosphere. She remembers spending hours at the hospital, chatting to other participants in waiting rooms, undergoing detailed assessments, and having long conversations with researchers.
“They were so meticulous in talking to you. There wasn’t anything that made you feel stupid… At the end, I left feeling like I was a member of the team,” Helena said. The researchers even arranged a Teams call to personally explain the results, which were announced during the COVID-19 pandemic lock down period, to participants, she added. The trial showed that while the drug was effective, its side effects were too severe for development to move forward. Despite this, Helena still views the experience as a positive one. “It is just that feeling of being involved,” she said.
George, who participated in a clinical trial that has only recently finished, said he took part because of his practical concerns about the future. “I have always wanted to know what is next: what do I do if this treatment stops working?” He chose the study after emailing a number of clinicians, and combining their advice with his own background reading. He knew there was a chance he would receive the placebo, but said he was comfortable with that. “That is the way trials work, and I was just delighted to be part of it,” said George. “I just went in with the absolute belief that I was on the real thing.”
How patient involvement is changing MS research
Both were keen to stress that research is much broader than drug trials alone. Researchers study “all sorts of interesting things, including lifestyle, wellbeing, and symptom management”, Helena said. “When you have a condition like MS, you have to live with it for the rest of your life. Knowing this kind of work is being done, and being a part of it, makes me feel a bit better,” she added.
Patient and Public Involvement (PPI) is another area of research both Helena and George have been involved in. PPI aims to make sure the voices of people with lived experience of a health condition are included in healthcare. It can involve anything from taking part in official discussions around drug approval, to helping international research groups to design studies and improve communication with participants.
Both admitted to feeling a little intimidated at the beginning of their PPI journeys.
Said Helena: “I thought, ‘here I am sitting with people who have studied medicine, and I can’t speak the language’. I did not realise that is what they needed. My job is to put my foot down and say, ‘I don’t understand what you’re talking about’. Because if I do not understand it, neither will other people.” George agreed, remembering one such meeting in an airport hotel where he struggled to find the confidence to speak up. “There were all these top names from around the world, and then there was me,” he said. “I did not know that my point of view mattered. But as a person with MS, particularly as a community of people with MS, we know more than any one clinician or researcher.”
Diversity and inclusion in MS research
Historically, research has tended to treat participants merely as subjects, and lived experience input as an afterthought. Today, that is changing, with PPI often being built into projects from the very start.
There is, however, still a lot of work to be done, particularly around inclusion, said Helena. MS affects people in very different ways, and research can only truly improve care if it reflects the full range of people living with the condition. Yet many studies and consultation groups are still dominated by similar voices and experiences.
“We do need a much wider range of people to be involved in research,” she said. “What I am living and experiencing is not the same as what everybody else is living and experiencing” Factors such as gender, race, ethnicity, age, disability, geography, and access to healthcare can all shape someone’s experience of MS, as well as how they respond to treatment or engage with services.
Researchers are actively trying to recruit participants from more diverse backgrounds, but it can be challenging. Financial pressures, caring responsibilities, inaccessible transport, and fatigue, for example, can all make taking part much harder for some groups.
Trust and communication can also be barriers. Research language can be very technical, and people may feel intimidated or worry about “sounding silly” if they do not understand. Helena said: “If someone does not fully understand what the researcher is talking about, they might sit there and nod — and then they will not take part in the trial.”
She also noted that many consultation groups she attended were “mostly made up of white people”. Historical mistrust of healthcare systems, lack of outreach into underrepresented communities and limited awareness of opportunities to get involved can all contribute to this imbalance. “I do not know how we solve it, but I know we have to talk about it,” she added.
|
“In a survey of 2,500 MS patients, most people, across all ethnicities and races had very positive thoughts about research. But they did not know where to find out about research, or their doctor never asked them to be involved,” Mitzi Joi Williams of Joi Life Wellness Multiple Sclerosis Center, USA Find out more the importance of diversity in clinical trials. Click here to listen to the MS in the Black Community episode of The ECTRIMS Podcast |
MS research and hope for the future
Overall, meeting researchers and taking part in studies changed the way Helena thought about living with the condition. “You meet people who are so passionate about trying to help people with MS, and that makes you think there is hope,” she said, adding that the experience of taking part in a clinical trial made her feel connected to something bigger. “The idea of doing your part is really good for your mental state of mind: it makes you feel like things are moving ahead.”
For George, hope comes from empowerment and involvement. He has seen the treatment landscape change dramatically over the last 15 years, but he believes the biggest shift has been in how people with MS are involved in research itself. “Research is not just about people with MS anymore. It is being shaped by people with MS,” he said. “And why shouldn’t it be the very people living with the condition who help us understand it?”
To find out more about MS studies in your county and how to get involved, find an ECTRIMS Community Supporting Partner in your region and get in touch.