Episode 339: Understanding Progression Independent of Relapse Activity with Professor Alan Thompson

A couple of terms have found their way into the MS lexicon and they have left some people living with MS feeling confused and even frightened. If you've been diagnosed with relapsing-remitting MS and you've always assumed that disease progression only occurs at the time of a relapse, you may be wondering what progression independent of relapse activity, or PIRA, means and how it may or may not impact your MS journey. And if you are someone whose MS seems relatively stable and well-managed, you may be wondering whether your central nervous system is under some sort of silent attack from smoldering MS.  Professor Alan Thompson joins me this week to shine a bright light on what, for many, are anxiety-inducing terms and help us understand what they are actually attempting to describe. Professor Thompson is the recipient of virtually every high honor and award that's given in the field of multiple sclerosis research, including the John Dystel Prize for MS Research in 2017, the Sobek Research Prize in 2020, and the 2021 Charcot Award, which recognizes a lifetime of achievement in outstanding research into understanding and treating MS. We're also sharing results of a study that suggests that kids and teens who are living with MS may experience better outcomes if they are started on a high-efficacy disease-modifying therapy. We'll tell you about a study that adds to the evidence that autologous hematopoietic stem cell transplantation may be a highly effective treatment that allows some people living with MS to live symptom-free and even return to the workforce. We're sharing the details of an AI tool that can predict an individual's disease course, while we're talking about survey results that show some strong push-back from the patient community when it comes to using artificial intelligence in the diagnostic process. And we'll tell you about a study that shows that caffeine may improve balance, mobility, and even quality of life for people living with MS. We have a lot to talk about! Are you ready for RealTalk MS??! This Week: What is "Progression Independent of Relapse Activity"?  1:31 STUDY: High-efficacy disease-modifying therapies are shown to be effective in treating pediatric onset MS  3:02 STUDY: Compelling evidence for autologous hematopoietic stem cell transplantation (HSCT) as an effective treatment for MS  6:49 An AI tool has been developed that can predict an individual's MS disease course  9:17 SURVEY: Some people have mixed feelings about using AI in diagnosing illness  11:47 STUDY: Caffeine is shown to improve balance and mobility in people with MS  14:38 Professor Alan Thompson helps define a couple of terms that people with MS may find confusing and even worrisome   16:47 Share this episode  28:15 Have you downloaded the free RealTalk MS app?  28:35 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: https://realtalkms.com/339 ADD YOUR VOICE TO THE CONVERSATION I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts! Email: [email protected] Phone: (310) 526-2283 And don't forget to join us in the RealTalk MS Facebook group! LINKS If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com STUDY: Highly Effective Therapies as First-Line Treatment for Pediatric-Onset Multiple Sclerosis https://jamanetwork.com/journals/jamaneurology/fullarticle/2814784 STUDY: Autologous Hematopoietic Stem Cell Transplantation for Multiple Sclerosis: Long-Term Follow-Up Data from Norway  https://journals.sagepub.com/doi/10.1177/13524585241231665 STUDY: Predicting Disease Severity in Multiple Sclerosis Using Multimodal Data and Machine Learning https://link.springer.com/article/10.1007/s00415-023-12132-z SURVEY: Consumer Perceptions of Second Opinions and Concierge Health Services https://clinicbyclevelandclinic.com/consumer-perceptions-report STUDY: Potential Efficacy of Caffeine Ingestion on Balance and Mobility in Patients with Multiple Sclerosis: Preliminary Evidence from a Single-Arm Pilot Clinical Trial https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0297235 Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200 Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk Give RealTalk MS a rating and review http://www.realtalkms.com/review Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com. RealTalk MS Episode 339 Guest: Professor Alan Thompson Privacy Policy