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Impressions from ECTRIMS 2019

Blog Summary

It’s so inspiring to walk through hallways packed with thousands of researchers whose sole focus is MS. That’s what ECTRIMS (European Committee for Treatment and Research in MS) meetings are like. This year’s meeting in Stockholm a few weeks ago involved almost 10,000 of us!
 
I’ve been attending ECTRIMS for many years, and I’m always encouraged by what I see and hear...

The Zen of MS

Blog Summary

That’s what we’re all looking for, isn’t it? The truth is, when you find your zen, it is much easier to heal. I don’t mean heal in the sense of “find a cure,” but rather in the sense of “I am happy with my life and feel like I am the best person that I can be, disease or not.” I’m confessing to you that I’m the latter...

Mood and MS

Blog Summary

Those of us who have been involved in both the research and care of people with MS walk a tightrope sometimes between pointing out the severity of a problem and solving it. We want to alert our patients without overwhelming them. On Thursday, I attended a session on depression and other mood disorders at the Consortium of MS Centers meeting in Seattle that really brought home how prevalent these symptoms are in people with MS. While the numbers are sobering, the message is clear: bringing this information to light can only bring us closer to finding solutions. Depression is two or more times more prevalent in people with MS than in the general population, says Dr. Scott Patten (from the University of Calgary) in his review of the studies (find his presentation here). When researchers try to find out what factors predict lower quality of life, depression gets high marks. Not surprising, since depression affects how you function at work, in school, in your social life and during recreational activities...

Explorations of Progressive MS Reported at AAN 2019

Blog Summary

At last week’s Annual Meeting of the American Academy of Neurology (AAN), there was a dedicated session focused on progressive MS. To me, that’s an indicator of the ever-increasing awareness of the need for more research in progressive MS. I think this awareness can be directly linked to efforts of the International Progressive MS Alliance, in which I am involved (by the way, there’s still time to check out this recent Alliance webinar on solving progressive MS).    The AAN meeting involves large general sessions each morning followed by hundreds of parallel sessions and courses related to all types of neurological disorders. Dr. Claudia Lucchinetti of the Mayo Clinic gave a talk about the processes and biological events that scientists believe are involved in progression. One of those events appears to be obstructions in energy production in nerve cells by the mitochondria, the tiny powerhouses that drive cellular activity. This potential mechanism of interest is one reason why researchers are conducting clinical trials to test whether biotin (a B-vitamin) can “feed” the mitochondria and preserve their optimal function. We should know more about biotin when one phase 3 trialis completed around 2020...

Myelin Repair, Gut Bacteria, and When Does MS Begin?

Blog Summary

At last week’s American Academy of Neurology’s Annual Meeting in Philadelphia, I was struck by the tremendous progress we’ve made in understanding and treating MS. We are closer now than we have ever been to ending MS forever. I’m sharing some of that progress here, and I invite readers to browse the scientific summaries(abstracts) for yourselves, and also check out my colleague’s blog from the AAN, "Explorations of Progressive MS Reported at AAN 2019."  Myelin Repair Trials: I was excited to see first results from a small, open label trial of a thyroid hormone mimic called liothyronine to see if it is safe and holds promise for promoting repair of nerve-insulating myelin, a main target of damage in MS. The study was led by Dr. Scott Newsome of Johns Hopkins University, who received a grant from the National MS Society to support this trial. He reported that it was generally well tolerated, with GI symptoms being the main side effect. This kind of small study isn’t designed to detect actual myelin repair, but the Hopkins team is now analyzing other outcomes to see whether they see hints that a phase 2 trial is warranted (abstract S56.003)...

Twice as Many

Blog Summary

As an invisible illness, it’s often difficult to know if someone lives with MS. So, it comes as no surprise that many of us have a connection to MS we may be unaware of.And the odds of our connection have just increased...

Precision Medicine in MS – What Will it Take?

Blog Summary

I’ve just come back from an exciting meeting in Dallas hosted by ACTRIMS (Americas Committee for the Treatment and Research in MS).  The focus was precision medicine. It’s the idea of using a person’s genetic background, environment, lifestyle and other factors to develop a customized approach to treat MS.   More than 1200 clinicians, young investigators and seasoned researchers gathered to consider what precision medicine would look like for people with MS, and the challenges and opportunities in getting closer to precision medicine. If you’re interested, you can browse the summaries of the presentations here...

A Loss of Taste

Blog Summary

Somewhere along the way, my ability to savor certain foods has waned. Actually, it’s done more than waned. In some cases, it has warped into a bizarro situation where items I’ve long loved now suddenly taste of bitter disappointment.   What food now tastes terrible to me? My beloved morning coffee (with the exception of peppermint-flavored java), several red wines I used to adore, some marinara sauces, toasted everything bagels, and even the heartiest of sandwiches, unless they’re slathered with this spicy chipotle mayo I found...

Diet Matters… and It Matters Now

Blog Summary

Greetings from ECTRIMS, the 34th Congress of the European Committee for Treatment and Research in MS. This is a lion of a meeting–the world’s largest gathering of researchers dedicated to MS. One thing I have noticed is how close MS researchers are getting to the real concerns of people affected by this disease. People with MS have been asking for years about diet–is there a diet that works for MS? Does what you eat matter? The work I’ve seen thus far is beginning to answer these questions (links to the scientific summaries, or abstracts, are provided below)...

MS & Movement

Blog Summary

One of the things I love about attending the Annual Meeting of the Consortium of MS Centers is how many studies focus on pinpointing problems in the daily lives of people with MS and how to find solutions. This is the point of rehabilitation–to restore or maintain function as much as possible. One problem that is being investigated is sedentary behavior, also called “sitting time.” Researchers from the University of Alabama at Birmingham and colleagues around the country administered a physical activity questionnaire to more than 6,000 people with MS...

This Side of Hope

Blog Summary

My mom has lived with MS since her 20s. She was diagnosed before I was born, so MS has always been something that is a “normal” part of my life. Through the years, MS has thrown her some curveballs, but my mom has always found a way to adapt. She’d put on a smile and learn a new way of doing something she loved and wasn’t willing to give up. She is strong and resilient, and this has impacted me in the most extraordinary way.