Progress and Challenges in MS research – Reflections on ECTRIMS 2013

Why did 8,000 MS scientists and physicians travel thousands of miles and devote a week outside of their labs and offices to attend the 2013 ECTRIMS meeting that just took place in Copenhagen?  The bottom line is that connecting with other scientists to share ideas, communicate new findings and even learn what’s not working is the lifeblood of science and it’s what stimulates faster progress. Meetings like this are vital to spurring new approaches and uncovering promising leads – more about that later.
During the week attendees heard about cutting-edge research that addresses virtually every aspect of the challenge to stop MS in its tracks, restore function, and end MS forever. My National MS Society colleagues blogged on some of the exciting progress toward protecting and repairing the nervous system, maximizing rehabilitation and exercise therapy, and discovering risk factors that may worsen MS or increase the likelihood of developing it. And scientist/journalist, Dr. Julie Stachowiak, who is living with MS, shared personal reflections on new research about children in MS families, teens with MS, driving, exercise, shared decision making, and some emotional issues that can occur in people with MS.
I’ll just note a few additional highlights – from the 1,000 presentations and posters – that I found important. Anyone interested in ECTRIMS presentations can visit the meeting Website and view the scientific summaries (referred to as abstracts in the program).
  • Therapies: There is more evidence that treatment with disease-modifying therapies early in the course of MS can help prevent future deficits, and additional reports supporting the benefits of many of the approved therapies. There were also presentations about potential benefits of therapies in the pipeline, including alemtuzumab and pegylated interferon beta (both being reviewed by the FDA) laquinimod, daclizumab and anti-LINGO.
  • Neuroprotection: The idea of protecting the nervous system from damage in MS was a major topic, and one approach is to test therapies already on the shelf for their protective qualities. It was disappointing to learn that a small clinical trial of an ALS therapy, conducted by Dr. Emmanuelle Waubant at the University of California at San Francisco with Society funding, failed to show benefits.  While this one result is disappointing, additional neuroprotection trials are underway and I hope these will bring good news when they are completed.
  • Understanding damage: There is increasing evidence that malfunctions of mitochondria, the tiny energy producers of cells (think of them as battery packs), contribute to nervous system damage in MS. Professor Martin Kerschensteiner of Ludwig-Maximilians-University in Munich, Germany presented amazing pictures showing the movement, or “trafficking,” of substances and mitochondria inside living nerve cells. He also showed how movement can be blocked. Now using this technology the team is tracing how nerve cells are damaged in MS, and they’ve uncovered signs that for certain damage, the nerves will either recover fully or degenerate. This opens up possibilities for preventing the nerve degeneration that underlies progressive MS. This cutting-edge question of how internal traffic inside cells contributes to proper functioning won three investigators a 2013 Nobel Prize. Read more about damage and repair in Dr. Bebo’s blog.
  • Risk factors: Researchers continue to identify some factors that may contribute to MS, such as specific genes, infections, and lifestyle factors such as smoking and obesity. None of these is a single cause of the disease. It’s clear that not everyone who has MS has been exposed to these factors, and not everyone who is exposed to them will get MS. But furthering our understanding of possible contributors will help us figure out what causes MS. It was also exciting to see a Society research fellow, Dr. Nikolaos Patsopoulos of Harvard, receive an ECTRIMS prize for presenting a study that maps common gene variations related to susceptibility to MS. Read more about risk factors in Dr. LaRocca’s blog.
Earlier I noted that communicating with peers is a vital part of science. If you are reading this, then you probably also value the importance of learning through all possible communication channels, including social media. At ECTRIMS I led a session with Professor Alan Thompson, where we leveraged social media as a way to stimulate the conversation.  Among the panelists were Drs. Gavin Giovannoni and David Baker of Barts and the London School of Medicine and Dentistry, who write one of my favorite blogs by MS researchers.

A few takeaways for me were that 1) lack of communication can lead to misunderstandings about new discoveries and the scientific process, and 2) more scientists and doctors need to actively participate in the dialogue in the MS online community so that we can create common understanding between everyone interested in solving MS.
I started this blog talking about how important scientific meetings can be for driving progress. I’ll share just one example. A few years ago I heard from a few frustrated researchers that “there’s not much we can do to stop progressive MS.” That spurred the idea of convening a think tank of MS investigators to focus on what we know and don’t know about progressive MS, review what therapies had already been attempted, and outline next steps for tackling this extremely important challenge.
A few meetings later, and the Progressive MS Alliance was launched. This is an international effort to connect resources and experts around the world to find the answers and develop the solutions to end progressive MS. I think this is going to speed progress like never before. And that’s already happening -- At ECTRIMS, an impressive 85 separate presentations referenced progressive MS, and there are currently some 44 clinical trials at various stages of testing for progressive forms of MS. That makes me feel hopeful that the prospect of finding effective treatments to stop progression is higher than ever.
I’m already looking forward to next year’s meeting in Boston where ECTRIMS will join forces with their North American counterpart, ACTRIMS, to host this remarkable gathering of thousands of scientists committed to MS research. I expect that we’ll continue to hear more breakthroughs to stop progression, restore function, and end MS forever.  We’ll be there to cover the meeting and hope that you’ll join us.

Until then, continue to check in here and visit for research updates and breaking news. 
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Timothy Coetzee, PhD

Dr. Timothy Coetzee, National MS Society Chief Advocacy, Services and Research Officer, has been a leader in the pursuit of innovative ways to move us closer to a world free of MS since receiving his PhD in microbiology and immunology in 1993. 

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  • Kim Price   Oct 8, 2013 6:49 PM
    Excellent synopsis of the meeting! Thank you! Updates like this are encouraging to those of us dealing with progressive MS like my husband. I really appreciate the work you're doing, Dr. Coetzee.
  • Donna Tijerina   Oct 9, 2013 12:59 AM
    Excellent blog, very informative. Thanks for your work.
  • Elaine Winchester   Oct 9, 2013 4:15 AM
    Does chiropractic offer help for those with MS?
  • Kathy DiGesu   Oct 9, 2013 6:51 AM
    My daughter Karen recently became paralyzed with MS. She is in a nursing home. She is 46 years old. She has a progressive form of MS. The only hope we have for her is the Ectrims information from these meetings. Please keep me in touch with news of where the clinic trials are near our home in Maine. I don't believe there are any clinic trials near us. Please.
  • Kellie   Oct 9, 2013 2:11 PM
    I would love to hear more research on alternatives instead of drugs to treat MS. I think we need to focus on healing the immune system to become healthy. There are far too many people who have taken the alternative route and are healthier and happier because of it. I've been living with MS for over 25 years and went the traditional medical route for the first 15 and I was sick and debilitated. When I went the alternative route, I believe it saved my life. I sit here now at the age of 43 virtually symptom free over 9 years.
  • Rich   Oct 17, 2013 12:40 PM
    Dr. Terry Wahls claims to have significant results from a dietary and exercise based approach (the so-called Wahls Protocol). Her initial claims and personal experience seem to be pretty unbelievable and explainable by random chance in my opinion. However, she is conducting a clinical trial that is getting significant results. Google her name for more information, including preliminary clinical results.
  • Leslie   Oct 20, 2013 12:31 PM
    To go along to Kellie's comment...I agree...I was on Copaxone for over 2 years and took a few other things as needed for fatigue, pain and Trigeminal Neuralgia. I started acupuncture last November because I just felt so awful all the time. My insurance doesn't cover it, but we have figured out how to make it work and it has been the best decision I've ever made. I have almost full relieve from numbness, which was constant previously, and I have not had a single bout of TN since then either. My last bout landed me in the hospital and was happening about once a month to every few weeks.
    I quit my Copaxone this spring and have kept up with acupuncture. I can say I feel better than I have in years. I'm going to my specialist next month for my yearly MRIs and checkup, so we will see how things look. I've debated starting another med, but just feel like some alternative things have helped so greatly. ? Idk. The drug companies don't have any money to make with alternative therapy so...we will see. I have a balance between alternative and medical. I'm open to options, but would recommend acupuncture to anyone.
  • Ron   Oct 29, 2013 8:18 PM
    Counterpoints: 1. Be careful when reading anecdotes about symptomatic relief from this or that diet or treatment. Oftentimes, people were misdiagnosed in the first place! 2. Although they vary, the medicines for MS are shown to be effective to a certain extent. I think it is unwise to go off them entirely, without trying a different drug to see if you tolerate it better. 3. Dr. Wahls' initial trial was not effective as I recall. My wife had no noticeable benefit from her diet.