Episode 265: Making MS Research Accessible to People Affected by MS and Why That Matters with Sharon Roman

Living with MS comes with its own set of sometimes significant challenges.  But being in the dark, unaware of the noteworthy and remarkable advances being made in MS research is one challenge that we're learning to overcome.  Sharon Roman is a patient-partner and writer for the British Medical Journal Group. Sharon lives with MS and she also writes a blog called Tremlett's MS Research Explained. The blog features plain-English posts detailing the research being done by Professor Helen Tremlett and her team. Professor Tremlett is the Canada Research Chair in Neuroepidemiology and Multiple Sclerosis at the University of British Columbia. Sharon joins me to talk about Professor Tremlett's pioneering research on the prodromal phase of MS, and to discuss why it's important to make MS research accessible and understandable to everyone in the MS community. We're also sharing study results that show the key to reducing MS fatigue could be a trip to the gym. We'll tell you about a study that measured improvements in physical disability, fatigue, and health-related quality of life among people with MS after they received stem cell therapy. We'll tell you about the significant differences in the gut microbiome of people living with MS and what that might mean for potential new treatments. We'll tell you about a study that discovered an interesting difference in immune cells among people living with MS. And we'll explain the riddle this poses for scientists. We have a lot to talk about! Are you ready for RealTalk MS??! This Week: The importance of making MS research accessible to people affected by MS  :22 A study shows that high-intensity resistance training improves MS fatigue  2:44 A study measures the long-lasting benefits of aHSCT for people living with MS   6:31 A study identifies differences in specific bacteria levels in the gut microbiome of people living with MS  9:59 A study reveals differences in immune cells among people living with MS  13:22 Sharon Roman discusses the importance of making MS research accessible to people affected by MS  18:43 Share this episode  32:04 Download the RealTalk MS app for your iOS or Android device   32:24 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: https://realtalkms.com/265 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 National MS Society COVID-19 Vaccine Guidance for People Living with MS https://www.nationalmssociety.org/coronavirus-covid-19-information/multiple-sclerosis-and-coronavirus/covid-19-vaccine-guidance Tremlett's MS Research Explained https://tremlettsmsresearchexplained.wordpress.com STUDY: High-Intensity Resistance Training in People with Multiple Sclerosis Experiencing Fatigue: A Randomised Controlled Study https://msard-journal.com/article/S2211-0348(22)00613-7/fulltext STUDY: Impact of Autologous HSCT on the Quality of Life and Fatigue in Patients with Relapsing Multiple Sclerosis https://www.nature.com/articles/s41598-022-19748-7 National MS Society: aHSCT and MShttps://nationalmssociety.org/Treating-MS/aHSCT STUDY: Gut Microbiome of Multiple Sclerosis Patients and Paired Household Controls Reveal Associations with Disease Risk and Course https://cell.com/cell/fulltext/S0092-8674(22)01115-1 STUDY: Broader Epstein-Barr Virus-Specific T Cell Receptor Repertoire in Patients with Multiple Sclerosis https://rupress.org/jem/article/219/11/e20220650/231431/Broader-Epstein-Barr-virus-specific-T-cell 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 265 Guest: Sharon Roman Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS Privacy Policy