World MS Day: Interview with Dr Lydia Makaroff

In the lead-up to World MS Day on 30 May 2025, Medicom Medical Publishers spoke with Dr Lydia Makaroff, CEO of the Multiple Sclerosis International Federation (MSIF), about key unmet needs in the MS community, how the MSIF is working with healthcare professionals worldwide, and why 2025 is a pivotal year for diagnosis and patient engagement.

To start, could you talk us through some of the key unmet needs the MSIF addresses?

“One of the most urgent unmet needs is delayed diagnosis. That’s why the theme for World MS Day this year on 30 May is “My MS Diagnosis”. We’re focusing on helping healthcare professionals recognise the early signs and symptoms of MS, and educating people affected by MS on the range of diagnostic tests used.

Some of these tests, like neurological exams, MRIs, lumbar punctures, and evoked potentials tests, can feel intimidating. Consequently, we’ve developed animated graphics that anyone, including clinicians, can use to explain these procedures to patients. These tools not only demystify the diagnostic journey but also foster shared understanding.”

How are MS groups around the world participating in World MS Day this year?

‘’Our member organisations are incredibly active. For instance, we’re hosting a Webcast focused on MS diagnosis. Still, many local MS societies will also hold in-person events, where physicians and people living with MS come together for open dialogue. It’s a unique opportunity for mutual learning and exchange.”

What ongoing support does the MSIF offer physicians and clinical teams beyond World MS Day?

‘’We’ve developed a Resource Hub with over 400 resources, many created by our member organisations. These are invaluable tools for clinicians to support shared decision-making with patients. They’re available in multiple languages so doctors can offer culturally and linguistically appropriate information, particularly helpful for non-English speaking families.

“One of our recent resources is a Guide on wellness practices and complementary therapies, currently available in English, Spanish, and Arabic. The guide presents a broad range of practices grouped into 3 categories:

1. Wellness practices such as exercise, healthy eating, and relaxation techniques that support general well-being.
2. Complementary therapies that some people with MS use to manage symptoms, with evidence of their effectiveness.
3. Discouraged therapies that may be ineffective or pose safety risks.”

“The guide also includes a decision-making checklist to help people weigh up their options based on cost, safety, and scientific evidence. This resource equips clinicians to have informed, balanced conversations about non-pharmaceutical approaches without undermining the use of approved MS treatments.”

What challenges does the MSIF face, particularly in collaborating with clinicians or professional societies?

“One area where I’d love to see progress is how patient advocates are integrated into the clinical and research landscape. Oncology, for example, has done this really well. At the ESMO [the European Society for Medical Oncology] Congress, there’s a strong patient advocacy track and community support. We’d love to see something similar at MS conferences.

Conversely, MS advocacy can offer oncology–and other disease groups–models for twinning organisations across regions. Simply bringing 2 MS societies from different countries together can lead to incredibly rich exchanges and collaborative learning.”

Could you elaborate on the clinical and research work the MSIF supports?

“On the clinical side, the MS community is waiting for the release of the updated McDonald Criteria, the internationally accepted guidelines for the diagnosis of MS. Once the revised criteria are published, we’ll work with clinicians worldwide, particularly in low-resource settings, to support their understanding and use of the new guidance in real-world practice.

On the research front, we’re contributing to 2 major initiatives:

1. The Patient-Reported Outcomes in MS Initiative: We’re helping create and validate standards to better capture the lived experience of MS.
2. The International Progressive MS Alliance: This is a landmark collaboration that funds high-impact research into progressive MS, prioritising studies that might not otherwise receive funding, but which are highly relevant to the MS community.”

Are there any final messages you’d like to share for World MS Day?

“Yes! If you’re reading this before or on 30 May, I invite you to take part in the #HeartHandChallenge on social media; take a selfie forming a heart shape with your hands to show support for the MS community [https://worldmsday.org/ms-heart-challenge/].

Also, please sign up for the MSIF newsletter to stay informed about new resources, research updates, and ways to get involved.”

For more information on World MS Day activities and how you can support people living with MS, visit www.worldmsday.org.

 

 

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Posted on 26 May 202528 May 2025