The MS Trust Podcast

Episode: ECTRIMS Patient Community Day: why researchers need people with MS to get involved
Date: October 28, 2025
Hosts: Helena & Nick, MS Trust
Guests: Brett Drummond (MS Translate), Dr. Claire Winchester (MS Trust Head of Research), Natalie Basari (The Nerve of My MS), Lucy Taylor (MS Trust CEO)

Overview

This episode of The MS Trust Podcast recaps the ECTRIMS 2025 Patient Community Day and highlights the critical role of people with multiple sclerosis (MS) in research. The discussion includes:

• Key research developments from the world’s biggest MS conference (ECTRIMS)
• The growing involvement of people with MS in setting research agendas
• The importance of representation and inclusivity in MS research
• Tangible outcomes, next steps, and practical ways for listeners to engage

The episode brings together researchers, advocates, and the MS Trust team to reflect on conference insights, current breakthroughs, and the ongoing evolution of patient-centric MS research.

Main Segments & Key Insights

1. ECTRIMS Patient Community Day: Concept & Evolution

Guests: Brett Drummond & Dr. Claire Winchester
Timestamps: Begins at [02:16]

What Is Patient Community Day?

• Brett Drummond: Describes it as a “three-hour event held at the end of ECTRIMS, designed specifically to translate the latest MS research highlights to the people who are directly affected.” [04:39]
• Focus: Not just what excites researchers, but what truly impacts those living with MS.

Growth & Involvement:

• Record registrations and diverse virtual/on-site attendance this year.
• For the first time, featured a global panel of people with lived experience, sharing how they engage with research.
• “It’s not a one-way conversation… it’s also about learning from the MS community.” – Brett [04:39]

Researcher Engagement:

• Leading neurologists and researchers are “genuinely excited” to speak directly with people living with MS, making complex findings clear and actionable. [08:29]

Memorable Quote:
“I think that's a really important message to get across to people, is that you really can get involved, engage with this and help drive research forward.”
— Brett Drummond [06:20]

2. The Value of Lived Experience in Research

Timestamps: [10:05 – 13:51]

Progress & Remaining Gaps

• Brett: While inclusion of people with MS in research design has improved, “I don't think we can ever hear enough from the MS community.” [10:27]
• Claire: More projects now have patient voices embedded “from the start” (not just reviewing outputs), but diversity and true co-creation still need work. [12:18]
• Push for greater involvement from minority groups and broader representation.

3. Key Research Highlights from ECTRIMS 2025

Timestamps: [13:51 – 24:26]

Major Breakthroughs:

• CCMR2 Clinical Trial (University of Cambridge):

  • Third trial to show remyelination (myelin repair) is possible in MS. [14:14]
  • Small but positive results; not ready for clinical use, but sets the stage for future research.
  • Metformin and clemastine: promising agents, but more data and longer trials needed.

• Rehabilitation & Brain Health:

  • Increasing emphasis on “rehabilitation should not be an afterthought.” Start rehab/prehab from diagnosis, not after declines. [17:43]
  • Focus on aging and MS, menopause, and gender-specific aspects—“untangling” how these factors affect disease progression.

• New McDonald Criteria:

  • Newly revised criteria for MS diagnosis aimed at earlier, more accurate, and globally accessible diagnoses. [19:35]
  • “For people coming to consultants now with symptoms, this opens the door for an easier path to diagnosis… early treatment is key.” — Claire [19:35]

Memorable Quote:
“It sets the scene now and really says, yes, this is the area we need to be looking into.”
— Brett Drummond, on the CCMR2 trial [14:14]

4. Lifestyle, Mental Health, and Cognition in MS Care

Timestamps: [21:51 – 31:11]

Lifestyle Highlights:

• Ultra-processed Foods: Increased awareness of negative impacts on MS due to pro-inflammatory effects. [22:10]
• Dietary advice: Stick to general healthy-eating recommendations; more research needed on optimal diets for MS.

Mental Health:

• “We know that people living with MS are at higher risks of getting depression, anxiety, so higher rates of suicide than the general population. Do we talk about it enough? Probably not.” — Brett [22:32]
• Stronger focus needed on access to mental health services and integrating mental health/cognitive support as part of MS care.

Cognition:

• Improved methods for monitoring cognitive decline are needed.
• “If we can't detect it, how do we actually go about managing it?” — Brett [26:26]
• Tied to managing fatigue, pain, and other comorbidities.

5. Representation & Building Trust in MS Research

Guest: Natalie Basari (The Nerve of My MS)
Timestamps: [45:06 – 57:56]

Expanding Global & Racial Representation:

• Natalie’s organization broadened from the UK into Ghana and Nigeria to represent Black individuals with MS.
• ECTRIMS 2025 showed real progress: "A lot of people from Africa came. A lot of people who were African but living in other countries were there... I was amazed at how much people had heard about The Nerve of My MS." [47:12]

Overcoming Barriers for Minority Participation:

• Black individuals are often underrepresented due to lack of targeted information, cultural sensitivity, and communication barriers.
• “Researchers have to be intentional... Go up to [potential participants] and explain... be patient and really learn how to make that environment comfortable.” — Natalie [51:19]

Importance of Inclusive Research Design:

• Researchers should seek direct advice from community advocates for recruitment and study design.
• “Everyone should be involved knowing what's going on because it affects... we do all still need each other at the end of the day.” — Natalie [57:02]

6. Practical Ways to Get Involved in Research

Timestamps: [33:17 – 40:22]

Opportunities:

• TRUSTED Initiative (UK-wide): Lets people with MS sign up to contribute anonymized clinical data and be matched to research/clinical trials. [33:51]
• MS Register, Pregnancy Register: Help grow representative datasets and accelerate research discovery.

Advice:

• Engage with trusted organizations.
• Use your voice to highlight priorities.
• “When you see research that speaks to you... shout that from the rooftops.” — Brett [36:35]

7. The MS Trust’s Role and New Strategic Focus

Guest: Lucy Taylor (MS Trust CEO)
Timestamps: [57:57 – 66:52]

Conference Impressions:

• Lucy was inspired by the scale (9,500+ attendees) and positivity at ECTRIMS 2025.
• The Cambridge remyelination trial and new McDonald criteria were standout announcements.

Focus on Practical Support:

• MS Trust aims to “give people the knowledge and confidence they need to feel more in control of their MS, today and every day.” [58:56]
• Emphasis on bridging exciting research with daily realities—addressing ongoing care gaps in the NHS, for example.

New Research Funding:

• MS Trust to launch its first annual open grant round in spring 2026, funding research that tackles “the day-to-day stuff that makes a difference to people living with MS.” [64:01]

Memorable Quote:
“For us, it's really important that we are doing research. We have an objective to power research into the things that matter for people with MS, and to translate that into action.”
— Lucy Taylor [64:01]

Notable Quotes & Memorable Moments

• “I don’t think we can ever hear enough from the MS community.”
  — Brett Drummond [10:27]
• “It should be something that everybody is encouraged to know about, to take an interest in and to feel completely welcome to be involved in those conversations.”
  — Claire Winchester [12:57]
• “For people that are coming...for symptoms, opens the door for an easier path to diagnosis that's potentially using less invasive techniques...early treatment is key.”
  — Claire Winchester [19:35]
• “You really can get involved, engage with this and help drive research forward.”
  — Brett Drummond [06:20]
• “It feels really exciting and it's been really well received. People are really interested in it...there's some really exciting things going on at a global level...but in the meantime, what can we do to continue supporting people on a day to day basis?”
  — Lucy Taylor [66:25]

How to Get Involved / Resources Mentioned

• Trusted (TRUSTED Network): A new nationwide platform to match people with MS to research opportunities; tackles diversity and equitable access. [33:51]
• MS Register & Pregnancy Register: Ways to participate in population health research.
• ECTRIMS Patient Community Day: Find out about annual events, access the blog, updates & join mailing list ([website mentioned at 37:13]).
• MS Trust Helpline: Ongoing information/support for people with MS.
• MS Trust Best Decision Tool: Helps patients and professionals make informed treatment choices [Referenced by Lucy at 58:56].
• Opportunities to join future research projects: Keep your eyes on future announcements from the MS Trust.

Final Reflections & Outlook

• ECTRIMS 2025 marked real progress in amplifying the voices of people with MS and growing diversity in the research community.
• Patient involvement is vital, not just as subjects, but as equal partners shaping research priorities and practical solutions.
• There is growing optimism, tangible scientific progress, and a stronger sense of community—but day-to-day challenges remain.
• The MS Trust is committed to bridging big research advances with real, everyday support for all people with MS.

“Once you have a community that is so driven and so dedicated and so inclusive to including everyone as part of that process, results are going to happen.”
— Brett Drummond [41:27]

For More Information

• MS Trust Website: www.mstrust.org.uk
• Patient Community Day Info: ectrimspatientcommunity.eu (as referenced)
• Trusted (UK initiative): Details coming soon via MS Trust.
• The Nerve of My MS: Advocacy and support for Black individuals with MS ([organization discussed at 45:06])
• Socials: MS Trust on Facebook, YouTube, X/Twitter, TikTok, Instagram
• Helpline: 0800 032 3839, Monday-Friday, 10am-4pm

If you’re interested in shaping future MS research or want day-to-day advice, connect with MS Trust and their partners. Use your voice – it matters now more than ever.