Tuesday, October 18, 2011

ECTRIMS 2011: Bringing the MS Research World Together

Writer, ms.about.com

I'm pretty excited. I am in Amsterdam, and will be bringing you blogs straight from the biggest MS research conference in the world to date, the 5th Joint Triennial Congress of the European and Americas Committees for Treatment and Research in Multiple Sclerosis (ECTRIMS and ACTRIMS). The conference will be happening from October 19th to 22nd.

I'm looking forward to this conference on many levels. As a person living with MS, I am grateful, humbled and overwhelmed at the amount and diversity of research being done on my disease. I have to say, it can be an odd feeling to hear about data that describes the behaviors of someone with MS or some specific thing that may be happening in the body of someone with MS, knowing that that very well could be describing some of my issues or my central nervous system.

As a scientist myself, an epidemiologist, I am looking forward to "geeking out" on the research – approaching the presentations with a desire to learn what scientists are discovering, as well as how they are approaching some complex questions and challenges. I want to know why these researchers chose their topics – the people working with the mice, as well as the people looking at whole populations and their risks for MS.

Dr. Timothy Coetzee, Chief Research Officer of the National Multiple Sclerosis Society, says that this conference may lead to "new ways of thinking about MS," including possible approaches to stopping disease progression, clues as to why one person is more susceptible to MS than others, and research that could eventually show the way to repairing the damage done by MS.

In the end, what I am most interested in is what the research means for us – the people living with MS right now, as well as future generations of people who will have MS and for whom it could be prevented. I will try to answer this question and others in my blog as I try to bring the research to you in a "friendly" format, in language that is accessible and with an indication as to how this research could impact our lives.

In striving to give you an idea of the variety of research that is going to be presented at the conference, I hope that everyone will find something of interest to themselves and their specific situation. That said, I will cover topics such as:

Relapse frequency and aging

New ideas about determining if people are responding to treatment before waiting for "treatment failure"

Exposure to disease-modifying therapies during pregnancy

Patterns of treatment initiation and discontinuation

New approaches to cognitive issues

I urge you all to take a look at the research yourself. Right now, you can view abstracts for most of the presentations by going to Scientific Programme, opening up a day and browsing the topics. Later, you will be able to view the actual posters and presentations.

Tune in to this blog throughout the week to see what the latest science is revealing about MS.


  1. Thank you for being there, Julie, and for reporting back to those of us who cannot be at ECTRIMS 2011. This is indeed an exciting time and I am hopeful for new discoveries on the rise.

    Crystal Frazee
    Thriving With MS

  2. Julie,
    If you happen to have the opportunity to find out any new or old forms of treatment of MS related trigeminal neuralgia,I would greatly appreciate it. My sister is literally suffering in unbearable pain on a daily basis and we need help, gamma knife surgery was unsuccessful and medication doesn't help.
    Thank you for any assistance and for offering the blog in general.

  3. Julie…
    The Accelerated Cure Project for Multiple Sclerosis was founded in 2001.

    Its' "initial scientific project was the development of the Cure Map, a comprehensive analysis of the causes of human disease and the knowledge generated by the many scientists who have investigated these causes in MS."

    The founder recognized the many groups involved in fighting MS but, none seemed to be working together in their efforts.

    Please look to ACP. Its' sole mission is to find out what causes MS so that a cure can be found.


    Sarina Sivilli
    ACP Subject, Supporter and Volunteer