It's MS Awareness Week! And the single event that is likely going to have the most impact in raising awareness of MS in the United States is the recent announcement of the MS Prevalence Study results.   The results of this study corrected the decades old notion that there were only about 400,000 people living with MS in the United States. We now know that the number of people living with MS in the U.S. is closer to one million. More than twice as many as had been previously estimated.   In this special RealTalk MS episode, we're going to look at MS prevalence from a number of different perspectives. My guests include National MS Society President and CEO, Cyndi Zagieboylo, the National MS Society's Executive Vice-President of Research, Dr. Bruce Bebo, and MS Prevalence Study Investigator, Dr. Ruth Ann Marrie.   But what about people who are living with MS? What are their thoughts about being one in a million? We're also talking with MS Activists Tami Ryan, Karen Jackson, and Dan & Jennifer Diggman.   We have a lot to talk about! Are you ready for RealTalk MS?!  ___________

It's MS Awareness Week  :22

My Interview with National MS Society CEO, Cyndi Zagieboylo  3:40

My Interview with National MS Society Executive Vice-President of Research, Dr. Bruce Bebo  12:32

My Interview with MS Prevalence Study Investigator, Dr. Ruth Ann Marrie  24:18

Comments about the MS Prevalence Study from MS Activists Tami Ryan, Karen Jackson, and Dan & Jennifer Digmann  34:34

Join the RealTalk MS Conversation  38:13

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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

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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

Download the RealTalk MS App for iOS

Download the RealTalk MS App for Android

The Prevalence of MS in the United States: A Population-Based Estimate Using Health Claims Data

A New Way to Estimate Neurologic Disease Prevalence in the United States Illustrated with MS

Validation for an Algorithm For Identifying MS Cases in Administrative Health Claims Datasets

Give RealTalk MS a Rating & Review

 

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RealTalk MS Episode 81 Hosted By: Jon Strum Guests: Cyndi Zagieboylo, Dr. Bruce Bebo, Dr. Ruth Ann Marrie, Tami Ryan, Lisa Jackson, Dan & Jennifer Digmann

Tags: MS, MultipleSclerosis, MSResearch, mssociety, MSActivist, TwiceAsMany, MSPrevalence, RealTalkMS

My guest this week is Diane Whitcraft, a retired middle school teacher who had been taking the same MS prescription medication  for more than 20 years. But once Diane retired and her health insurance changed, that same medication became unaffordable.   Diane traveled to Washington D.C. last month, as Wisconsin Senator Tammy Baldwin's guest at the President's State of the Union address. She is back in our nation's capitol this week, speaking at the National MS Society's Public Policy Conference about the importance of having access to affordable MS prescription medications.   Senator Tammy Baldwin (right) and Diane Whitcraft   We're also talking about the official statement on stem cell therapy for MS by The American Society for Blood & Marrow Transplantation. We'll tell you about a new study that measured the impact of diet and other lifestyle factors on MS progression, you'll hear about a different study that highlighted the large percentage of people who are being misdiagnosed with MS, and you'll learn how some new emojis will help to de-stigmatize disability.   We have a lot to talk about! Are you ready for RealTalk MS?!   ___________

It's Our Day on the Hill  :57

The American Society for Blood & Marrow Transplantation Makes an Official Statement About Stem Cell Therapy for MS  2:48

STUDY: The Impact of Diet & Lifestyle Factors on MS Progression  5:47

STUDY: 1 in 5 Patients Referred to 2 Academic MS Centers Are Misdiagnosed  8:17

How New Emojis Can Help De-Stigmatize Disability  5:47

My Interview with MS Activist Diane Whitcraft  12:36

Join the RealTalk MS Conversation  28:43

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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

___________

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

Download the RealTalk MS App for iOS

Download the RealTalk MS App for Android

Give RealTalk MS a Rating & Review

Autologous Hematopoietic Cell Transplantation for Treatment-Refractory Relapsing Multiple Sclerosis: Position Statement From the American Society For Blood and Marrow Transplantation

Dietary and Lifestyle Factors in Multiple Sclerosis Progression: Results from a 5-Year Longitudinal MRI Study

Incidence of Misdiagnosis of Multiple Sclerosis in Referrals to Two Academic Centers

Preview the New Emojis That Will Help to De-Stigmatize Disability

National Multiple Sclerosis Society: Advocate For Change

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RealTalk MS Episode 80 Hosted By: Jon Strum Guest: Diane Whitcraft

Tags: MS, MultipleSclerosis, MSResearch, mssociety, MSActivist, MSPPC19, RealTalkMS

No matter what sort of challenge a caregiver may be facing -- financial, emotional, or just trying to find the right resources at the right time, every caregiver challenge is made more difficult by that accompanying feeling of isolation that so many caregivers experience.

My guest is Heidi Telschow, manager of Fairview Health Services' Caregiver Assurance program, a unique program designed to seamlessly connect caregivers to the resources they need.

     We're also talking about the eye-popping increase in the prevalence of MS in the United States, now reaching nearly one million adults. We'll tell you about a study that shows how the early use of more intensive MS disease-modifying therapy may provide better outcomes for people living with MS, you'll hear about an Innovation Challenge that could reward your inner entrepreneur with $25,000 in cash, and we'll tell you why the FDA has been asked to fast-track a cannabis-based treatment for spasticity in progressive MS.   We have a lot to talk about! Are you ready for RealTalk MS?! ___________

STUDY: MS Prevalence In the United States Nears 1 Million  2:18

STUDY: Long-Term Benefit Seen in Early Use of More Intensive   Disease-Modifying Therapy  5:42

Lyfebulb-Celgene Innovation Challenge in MS  9:04

FDA Requested to Fast-Track Cannabis-Based Treatment for Spasticity in Progressive MS  10:43

My Interview with Heidi Telschow from Caregiver Assurance  12:36

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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

___________

LINKSIf 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

Download the RealTalk MS App for iOS

Download the RealTalk MS App for Android

A New Way to Estimate Neurologic Disease Prevalence in the United States Illustrated with Multiple Sclerosis

Validation of an Algorithm for Identifying MS Cases in Administrative Health Claims Datasets

The Prevalence of Multiple Sclerosis in the United States: A Population-Based Estimate Using Health Claims Data

RealTalk MS Episode 74: Induction vs Escalation Therapy with Dr. Aaron Boster

Clinical Outcomes of Escalation vs Early Intensive Disease-Modifying Therapy in Patients With Multiple Sclerosis

Application for Lyfebulb-Celgene Innovation Challenge in MS

Give RealTalk MS a Rating & Review

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Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.

RealTalk MS Episode 79 Hosted By: Jon Strum Guest: Heidi Telschow

Tags: MS, MultipleSclerosis, MSResearch, TwiceAsMany, Lyfebulb, Caregiving, RealTalkMS

Over the past year, we've seen our access to affordable, quality healthcare come under unprecedented attack. We've seen a federal judge declare the Affordable Care Act to be unconstitutional. And we continue to see our access to affordable prescription medications -- the medications that have been shown to delay the progression of MS and extend the quality of life for everyone living with MS -- that access remains threatened by the constant skyrocketing cost of those medications. That's why advocating on behalf of our own interests is so important to the MS community.     My guest this week is Bari Talente, the Executive Vice-President of Advocacy for the National Multiple Sclerosis Society. We're talking about the National MS Society's upcoming Public Policy Conference, the legislative issues that affect people living with MS in the United States, and the importance of MS advocacy.   We have a lot to talk about! Are you ready for RealTalk MS?!  

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

___________

LINKSIf 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

Download the RealTalk MS App for iOS

Download the RealTalk MS App for Android

Give RealTalk MS a Rating & Review

National Multiple Sclerosis Society: Advocate For Change

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Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.

RealTalk MS Episode 78 Hosted By: Jon Strum Guest: Bari Talente

Tags: MS, MultipleSclerosis, MSResearch, mssociety, MSActivist, RealTalkMS

George Pepper was diagnosed with multiple sclerosis in 2009, at the age of 22. He initially found it difficult to connect with others his own age who were living with MS, so George set up a website where people living with MS could meet and share their experiences. That website evolved into an online community called shift.ms, and today, more than 18,000 people participate in the shift.ms community. My guests today are the founder of shift.ms, George Pepper, and Aoife Kirwan, a member of the shift.ms community.      We're also talking about a new report that reminds us that there's a lot of fake health news online, how Medicare rules are costing people living with MS more money, a global response to talking about sex and MS, and a study that will introduce you to the Caregiver Strain Index, a reliable tool in measuring MS caregiver burden.   We have a lot to talk about! Are you ready for RealTalk MS?! ___________

A solution to Loneliness & MS   :23

Study Results Warn Against "Fake Online Health News"  2:48

Medicare Policies Cost People With MS More Money  8:50

MS International Federation Talks About Sex & MS  12:57

Caregiver Strain Index Is A Valid Measurement of Caregiver Burden  14:33

My Interview with George Pepper & Aoife Kirwan  18:24

Join The RealTalk MS Conversation  30:25

___________

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

___________

LINKSIf 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

Download the RealTalk MS App for iOS

Download the RealTalk MS App for Android

Give RealTalk MS a Rating & Review

The Most Popular Health Articles of 2018: A Scientific Credibility Review

Trends in Coverage for Disease-Modifying Therapies for Multiple Sclerosis in Medicare Part D

Sex Life & MS

Measuring Burden in Caregivers of People with Multiple Sclerosis: Psychometric Properties of the CSI Questionnaire

Shift.ms

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Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.

RealTalk MS Episode 77 Hosted By: Jon Strum Guest: George Pepper & Aoife Kirwan

Tags: MS, MultipleSclerosis, MSResearch, Caregiving, ShiftMS, MSIntFederation, RealTalkMS

One of the best ways to maintain physical function, manage the effect of some MS symptoms, and even offset depression is exercise. My guest is Dr. Deborah Backus, the director of Multiple Sclerosis Research at the Shepherd Center in Atlanta. We're discussing the importance of early rehabilitation, the difference that exercise can make for people living with MS, and STEP FOR MS -- an important clinical trial that may turn out to be a game-changer for MS rehabilitation.  

We're also talking about what people living with MS need to know about polypharmacy, a new transportation pilot project that's designed to make life easier for people living with MS, why an MS caregiver also needs to be an advocate, what happens when an MS caregiver ignores self-care, and a new clinical trial that will look at non-pharmacological approaches to managing MS chronic pain.

We have a lot to talk about! Are you ready for RealTalk MS?! ___________

Join the RealTalk MS Conversation   :22

Polypharmacy & Relapsing-Remitting MS  2:39

MS FOCUS's Transportation Pilot Project  6:21

What It Means For an MS Caregiver To Be An Advocate  8:06

What Happens When an MS Caregiver Ignores Self-Care  12:16

Clinical Trial to Study Non-Pharmacological Approaches to Managing Chronic MS Pain Is Recruiting  14:53

My Interview with Dr. Deborah Backus  18:04

Download the RealTalk MS App  33:05

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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

___________

LINKSIf 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

Download the RealTalk MS App for iOS

Download the RealTalk MS App for Android

Give RealTalk MS a Rating & Review

Polypharmacy in Outpatients With Relapsing-Remitting Multiple Sclerosis: A Single-Center Study

Investigators Recruiting People With MS Nationwide To Test Approaches to Managing Chronic Pain: Email: [email protected] Phone: (855) 320-8230

STEP FOR MS Study

STEP FOR MS Eligibility & Study Sites

Shepherd Center

 

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RealTalk MS Episode 76 Hosted By: Jon Strum Guest: Dr. Deborah Backus

Tags: MS, MultipleSclerosis, MSResearch, Caregiving, StepForMS, ShepherdCenter, RealTalkMS

One of the fundamental questions on the minds of just about everyone living with MS is How did I get it? What causes MS?  It's a question that's still awaiting a definitive answer. But as we wait for that answer, science is uncovering more and more information about MS risk factors -- the things that can make living with MS better or worse.   My guest is Dr. Farren Briggs, an epidemiologist who's focused on the etiology, or the cause of multiple sclerosis, and the risk factors that actually impact the course of the disease for an individual.

We're also talking about the Progressive MS Alliance's commitment to including the voice of people living with MS in MS research. We'll tell you about a study that looked at predicting physical disability and cognitive dysfunction in people living with MS. You'll hear about a study that evaluated the facts that are available on the Internet about diet and MS, how online relaxation therapy can improve anxiety and depression, new guidelines from the U.K. for pregnancy and MS, and how shared decision-making can lead to greater adherence to MS disease-modifying therapy.

We have a lot to talk about! Are you ready for RealTalk MS?! ___________

Progressive MS Alliance & Patient Engagement in MS Research   :23

Predicting Physical Disability & Cognitive Dysfunction in MS  2:16

Diet & MS: A Study of Facts vs Beliefs  3:52

Online Relaxation Training Shown To Be Effective in Reducing Anxiety & Depression Among People Living with Long-Term Neurological Conditions  9:57

Guidelines for Pregnancy & MS in the U.K.  11:58

Shared Decision-Making Leads to Greater Adherence to MS Disease-Modifying Therapy  13:40

My Interview with Dr. Farren Briggs  17:34

Add Your Voice To Our Conversation  28:15

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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

___________

LINKSIf 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

Download the RealTalk MS App for iOS

Download the RealTalk MS App for Android

Give RealTalk MS a Rating & Review

STUDY: Predicting Clinical Progression in Multiple Sclerosis After 6 and 12 Years

STUDY: Diet and Multiple Sclerosis: Scoping Review of Web-Based Recommendations

STUDY: The Effects of Relaxation Training On Depression and Anxiety In People Living with Long-Term Neurological Conditions

UK Consensus on Pregnancy in Multiple Sclerosis: Association of British Neurologists Guidelines

STUDY: Impact of Shared Decision-Making on Disease-Modifying Drug Adherence in Multiple Sclerosis

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RealTalk MS Episode 75 Hosted By: Jon Strum Guest: Dr. Farren Briggs

Tags: MS, MultipleSclerosis, MSResearch, CWRU, MSDiet

We know about the importance of disease-modifying therapy (DMT) in managing MS and slowing its progression. But you may not know that there are two very different schools of thought when it comes to how and why your neurologist may recommend one DMT over another. My guest is Dr. Aaron Boster, the System Medical Chief for Neuroimmunology at OhioHealth, and we're talking about an important conversation that you should be having with your neurologist.

We're also talking about the newly published clinical trial results that demonstrate that stem cell therapy may be more effective than DMT in managing disease progression among people living with relapsing-remitting MS. We'll tell you about a study that shows how mindfulness can be valuable in improving the well-being for people living with MS, we'll tell you about this year's winner of the National MS Society's Barancik Prize for Innovation in MS Research, and if you're living with secondary progressive MS, we'll tell you about a survey that you should really participate in.

We have a lot to talk about! Are you ready for RealTalk MS?! ___________

Stem Cell Therapy More Effective Than DMT in Managing Progression in Relapsing-Remitting MS   1:27

Mindfulness Improves Well-Being for People Living with MS  4:21

Stress, Depression & Fatigue Impact Caregiver Health Status  6:19

National MS Society Announces Barancik Prize for Innovation in MS Research  7:22

An Important Survey for People with Secondary Progressive MS  9:27

My Interview with Dr. Aaron Boster  11:58

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SHARE YOUR FEEDBACK, QUESTIONS, AND IDEAS

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

___________

LINKSIf 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

Download the RealTalk MS App for iOS

Download the RealTalk MS App for Android

STUDY: Effect of Nonmyeloablative Hematopoietic Stem Cell Transplantation vs Continued Disease-Modifying Therapy on Disease Progression in Patients with Relapsing-Remitting Multiple Sclerosis

STUDY: Longitudinal Associations Between Mindfulness and Well-Being in People with Multiple Sclerosis

STUDY: Quality of Life and Emotional Strain in Caregivers of Patients with Multiple Sclerosis

MS Coalition/ICER Survey About Secondary-Progressive MS

Give RealTalk MS a Rating & Review

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Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.

RealTalk MS Episode 74 Hosted By: Jon Strum Guest: Dr. Aaron Boster

Tags: MS, MultipleSclerosis, MSResearch, OhioHealthMS, HSCT, Mindfulness, Caregiver, Caregiving, MSSociety, ICER, RealTalkMS

Recent research suggests that loneliness is one more invisible symptom of MS. But social outreach and interaction have never been more accessible.  My guest is Mary Pettigrew, an MS Warrior and social media phenom. In 2014, Mary launched MSPals, a Twitter group that has evolved into a community of more than 5,000 followers. We're talking with Mary about the benefits of connecting online and the importance of finding your creative outlet.

We're also talking about new research on the severity and impact of MS fatigue, along with a new smartphone app designed to improve MS fatigue. We'll tell you about a new way of treating spasticity, and we'll give you the details about a new study that's looking at TeleRehab. We'll even tell you how to sign up for the study!

We have a lot to talk about! Are you ready for RealTalk MS?! ___________

Severity & Impact of MS Fatigue   2:06

MS TeleCoach App Designed to Improve MS Fatigue  4:31

A New Treatment to Manage Spasticity  6:45

The STEP MS TeleRehab Study  8:17

You Can Participate in the STEP For MS TeleRehab Study  10:23

My Interview with Mary Pettigrew, Founder of MSPals  11:58

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SHARE YOUR FEEDBACK, QUESTIONS, AND IDEAS

Email: [email protected]

Phone: (310) 526-2283

___________

LINKSIf 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

Download the RealTalk MS App for iOS

Download the RealTalk MS App for Android

Prevalence of Fatigue and Its Association with Clinical Features in Progressive and Non-Progressive Forms of Multiple Sclerosis

Improving Fatigue in Multiple Sclerosis by Smartphone-Supported Energy Management: The MS TeleCoach Feasibility Study

Supervised vs Telerehab Exercise program for People With Multiple Sclerosis: Eligibility & Study Sites

iConquer MS

Give RealTalk MS a Rating & Review

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RealTalk MS Episode 73 Hosted By: Jon Strum Guest: Mary Pettigrew

Tags: MS, MultipleSclerosis, MSResearch, STEPMS, MSPals, RealTalkMS

Some people living with MS may find that their attention span is shorter than it used to be, or that it takes them longer to process information. Learning directions can be hard, and decision-making may become more difficult. These are all examples of impaired cognition, or cognitive dysfunction.  Cognitive dysfunction can impact people living with relapsing-remitting MS, and it impacts almost everyone living with progressive MS.   My guest is Dr. Nancy Chiaravalloti, the Director of Neuropsychology and Neuroscience Laboratory and Traumatic Brain Injury Research at Kessler Foundation, and we're discussing Dr. Chiaravalloti's breakthrough work in improving cognitive function for people living with MS, and using MRI to actually see those improvements in the brain.       We'll also tell you about some interesting research that revealed what people living with MS consider to be their most important MS treatment goals, you'll hear about a new discovery that explains why the connection between the gut and MS might be really important, we'll talk some more about the importance of an MS Caregiver Protocol, and we'll tell you how you can participate in a new MS research study.   We have a lot to talk about! Are you ready for RealTalk MS?! ___________

The Things We'll Be Talking About in 2019   :24

Some Surprising Patient Preferences When it Comes to Assessing MS Treatment  3:17

Gut Immune Cells Cut Inflammation in MS  7:58

The Importance of an MS Caregiver Protocol  10:22

You Can Participate in an Upcoming MS Research Study  12:37

My Interview with Dr. Nancy Chiaravalloti  14:55

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LINKSIf 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

Download the RealTalk MS App for iOS

Download the RealTalk MS App for Android

Evaluation of a Novel Preference Assessment Tool for Patients with Multiple Sclerosis

Recirculating Intestinal IgA-Producing Cells Regulate Neuroinflammation via IL-10

Feasibility of Web-based CBT-I Intervention in Individuals with Multiple Sclerosis

Kessler Foundation

Give RealTalk MS a Rating & Review

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RealTalk MS Episode 72 Hosted By: Jon Strum Guest: Dr. Nancy Chiaravalloti

Tags: MS, MultipleSclerosis, MSResearch, KesslerFdn, RealTalkMS