RealTalk MS - Special Episode: Guiding the Future of MS Care

Episode Theme:
Jon Strum hosts a discussion on the new MS21 consensus recommendations—an international effort to redefine and improve standards of multiple sclerosis (MS) care to alleviate disease burden and enhance patient quality of life. His guests are Amanda Montague (MSAA Interim President and CEO) and Professor Elizabeth G. Celius (Oslo University Hospital neurologist), both active in the MS21 Initiative that unites professionals, advocates, and people with MS worldwide.

Main Episode Sections

1. Background: What are the MS21 Consensus Recommendations?

[00:00–04:37]

• Intro to Guests and Initiative
  • Amanda Montague leads a national MS resource nonprofit (MSAA).
  • Prof. Elizabeth G. Celius is a consultant neurologist and MS researcher.
  • Both participate in the MS21 Initiative (“MS in the 21st Century”), a collaboration among professionals, patients, and advocates internationally.
• History and Purpose
  • MS21 originated in 2011, published a first consensus in 2013 defining MS care for the 21st century.
  • The new update expands beyond treatment, emphasizing comprehensive care—including symptom management.

    “The initial thought was: what do we think is a minimum standard [of MS care] across the world? ...With 10 years’ experience, we wanted to expand… including burden of symptoms and their care, not only the treatment.”
    — Prof. Celius [01:48]

2. Patient and Advocate Perspectives

[03:10–04:32]

• Diagnostic and Access Gaps
  • Delayed diagnoses and obstacles accessing MRIs and proper treatment persist globally (“A real problem,” Amanda Montague [03:27]).
• Therapy Evolution
  • Patients face a “wonderful explosion” of disease-modifying therapies, requiring complex, collaborative decision-making.
  • This increase in therapeutic options also creates more conversations but can introduce new disparities and access issues.
• Informed Advocacy
  • Patient and advocate input has guided consensus development to better reflect lived experiences and practical needs.

3. Key Features of the New Recommendations

[04:32–07:15]

• Inclusive Consensus Process
  • 30+ members: healthcare professionals, patients, and advocates participating on equal terms.

    “What makes [MS21] unique—that we work together... The steering group decides what kind of questions do we want an answer [to]... We are equally important in this group.”
    — Prof. Celius [04:37]

• Holistic, Multifunctional Care
  • Emphasis on not only treating the disease but also managing invisible symptoms:
    • Fatigue, cognitive dysfunction, bowel and bladder symptoms.
  • Shared decision-making and patient education are core pillars.
  • Continued research and development needed—not just for new drugs, but for symptom relief and quality of life.

4. Real-World Application and Hopes for Change

[07:15–12:37]

• Holistic Aspirations Scaled Globally

  • Recommendations are both realistic and aspirational—intended as a “roadmap” towards better MS care everywhere, despite differences in resources.

    “They are beautifully aspirational and something that we can all work on... regardless of where they live or how wealthy they are.”
    — Amanda Montague [07:26]

• Empowering Patients

  • Tools to “raise awareness and… help patients to have more guts to ask for help.” (Prof. Celius [09:03])
  • The process revealed strong patient-provider agreement on MS care priorities.

• Implementation Barriers & Opportunities

  • Recognizes limitations: Most collaborators are from better-resourced countries, yet “it is the same problems all over.” (Prof. Celius [10:12])
  • Raising awareness among both professionals and patients is the first step, plus leveraging the published consensus globally.

• Advocacy and Local Solutions

  • Many recommendations may “seem so, so out of reach,” especially in under-resourced regions—yet this is framed as a call to action and an opportunity for “working smarter together.” (Amanda Montague [11:25])

5. Closing Reflections and Next Steps

[12:37–14:14]

• Summary of Core Themes

  • Optimizing care, strengthening shared decision-making and education, and fostering ongoing research are at the heart of the recommendations.

• Continued Collaboration and Global Learning

  “We can work together both for the holistic care and for the research into all these unmet needs… [and] join forces to improve care for this group.”
  — Prof. Celius [13:14]

  • Emphasizes sharing best practices internationally:

    “Some of these things are already happening and being done well, so we don’t have to reinvent the wheel. We can learn from each other...”
    — Amanda Montague [13:50]

Notable Quotes & Timestamp Highlights

• On the need for comprehensive, holistic care:

  "We need care for invisible symptoms like fatigue, cognitive problems, bowel and bladder symptoms... to ensure as good quality of life as possible."
  — Prof. Celius [06:48]

• On empowerment and global impact:

  "If we can, with these guidelines, tell the communities that this is what we really want… patients and healthcare professionals together, we agree."
  — Prof. Celius [09:03]

• On advocacy and setting ambitious targets:

  “I look at that as a potential opportunity for... advocacy... How do we identify solutions to places where... these things seem so, so out of reach? ...This is, I think, the beauty of... this group coming together with so much heart and compassion and belief and optimism.”
  — Amanda Montague [11:25]

Key Takeaways

• The updated MS21 consensus recommendations call for a truly patient-centered, holistic approach to MS care, balancing the latest medical science with quality-of-life issues and symptom management.
• Shared decision-making, raising awareness of unmet needs, and global collaboration are highlighted as essential strategies.
• The document aims to be both a practical guide and an aspirational vision, adaptable across diverse health systems and resource environments.
• The conversation underscores the value of uniting patients, advocates, and professionals as equal partners in redefining what comprehensive MS care should look like in the 21st century.

For further reading and free tools:
Visit msinthe21stcentury.com for the full MS21 recommendations and additional resources.