GUIDE:

The Best MS Resources

dave at white sands with forearm crutche

Over the years, ActiveMSers has amassed a team of professional experts, reputable organizations, and dependable websites to get the straight facts on multiple sclerosis. The sites, associations, and neurologists listed here have been thoroughly vetted and considered trustworthy, reliable resources for MS information. Please note, there are gobs more MS sites I frequent, and many are run by friends, but if I plug one buddy and accidentally miss another, gulp. So this certainly isn’t a complete MS directory, and some of your personal go-to’s might not be listed here. That may just be a gross oversight on my end, my bad. Or it may be absolutely intentional (sorry). There’s lots of misinformation out there, even from sites that purport to be legit. Tread carefully.

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BEST OVERALL KICK-ASS MS WEBSITE

ActiveMSers

Sure, I’m totally biased. What did you expect? But honestly, ActiveMSers features more information about staying active with this disease than arguably any other MS site. And having started March 2, 2006, to my knowledge it’s the longest running personal MS blog on the web. It’s loaded with hope, practical tips, essential advice, and it’s funny as shit. Oh yeah, and there's cursing—try that MS Society!

PRO:  Funny, chock-full of MS tricks, great newsletter, a forum with awesome members, clever blog, insightful product reviews, robust social media presence, cursing allowed.

CON:  The site could be updated more regularly, and what’s up with newsletter not being more frequent. It's almost as if the entire site is run by one dude. Oh, it is.

 
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BEST ORGANIZATIONS FOR GENERAL MS INFORMATION

National Multiple Sclerosis Society

Easily one of the biggest and most complete websites devoted to multiple sclerosis. This is a site all active MSers should explore. NMSS has information for the newly diagnosed, treatment options, webcasts, details on current research, and links to local chapters. Local chapters are ideal for finding MS resources in your area if you live in the US. 

PRO:  Nice info on current trials (i.e., potentially free treatment), unbiased information a relief from the typical pharma websites, a complete resource valuable to all MSers and their families.

CON:  The NMSS has raised the hackles of others in the MS community for a variety of petty and legitimate reasons. When you are big, you are bound to attract feedback from all sides.

Multiple Sclerosis Association of America

Like the NMSS, the MSAA has lots of helpful information for those with this disease, including lots of events, a free cooling vest and accessory program, mobile apps, videos, calendar of events, a magazine, toll-free hotline, and so much more I can't list it all. Bookmark this site!

PRO:  Their cooling equipment distribution and standard equipment distribution programs for those with financial issues is a godsend.

CON:  Their magazine, The Motivator, is only published twice a year. Yes, I want more!

The Multiple Sclerosis Foundation

The MS Focus offers programming and support (including a toll-free helpline) to keep people with MS self-sufficient and their homes safe, while their educational programs heighten public awareness and promote understanding about the disease. Check out their info section on coping with multiple sclerosis. Better yet, their helpful (and free) booklets cover a ton of MS topics: pregnancy, CAM, nutrition, exercise, intimacy, cognition and more. 

PRO:  Their cooling equipment distribution program is super awesome for those with financial issues.

CON:  Their free magazine (get a subscription!) has solid content but it did once feature me on the cover. Scary!

More Fave MS Organizations Worldwide:

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BEST SITES FOR MS RESEARCH

Multiple Sclerosis Research

This UK-based blog is written by Gavin Giavanonni, the lead researcher and MS specialist at the Neuroimmunology Group at Barts and The London. He's got some sidekick researchers who regularly chime in as well, all of whom effortless dissect into English the latest cutting-edge research on our fickle disease. Plus I've contributed a post, so there's also that. 

PRO:  Their honesty and straightforward approach is refreshing in a world of exaggeration. When other researchers discover a "cure" in mice, they break it down and make sense of it all (and sometimes break it apart).

CON:  I had to make a separate folder on my e-mail account because I can’t bear to delete one blog post as they are so dang interesting.

Google Scholar

The brilliance of Google Scholar is that you can sift through ALL the latest published research. I’ll often search for “multiple sclerosis” in general, and then add other terms, e.g., ”exercise”, to drill down. To keep it from getting overwhelming, I only look at abstracts and articles added in the last year.

PRO:  Basically, every good MS research paper, ever.

CON:  And every bad MS research paper, ever.

Popular MS Medical Journals and Research Sites:

 
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BEST MS CONFERENCES

The European Committee for Treatment and Research in Multiple Sclerosis

ECTRIMS is the granddaddy of MS conferences, and every year there are an avalanche of MS studies released along with a bevy of poster sessions. This is typically where the world’s most cutting-edge research is released, often to fanfare. You can view webcasts, abstracts and ePosters from congresses dating back to 2012.

PRO:  Your eyes will strain at the volume of research produced annually.

CON:  Many research studies are so technical they can only be comprehended by researchers.

Americas Commitee for Treatment and Research in Multiple Sclerosis

ACTRIMS is the North America version of ECTRIMS, attracting researchers from the United States and Canada. Unfortunately, with the exception of the latest conference, past forums are not archived in full. But it’s fun to follow the event annually in real time.

PRO:  If you live in the Western hemisphere, the event is in your relative time zone.

CON:  Sometimes ACTRIMS combines with ECTRIMS (good!) but that means one less MS gathering (boo).

Consortium for Multiple Sclerosis Centers

CMSC is a different beast from the aforementioned MS conferences. Instead of focusing primarily on pharmaceutical research and MS nitty gritty, CMSC attracts health care professionals whose goal is to improve the lives of those affected by multiple sclerosis. This is where you’ll find exercise, diet, cooling and supplement research.

PRO:  Much of the research is in layman’s terms, so it won’t go over your head.

CON:  You can only view abstracts going back to 2016.

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BEST MS NEWSLETTERS

Rocky Mountain MS Center

This center, headed by Dr. Timothy Volmer, a renowned MS expert, puts out easily one of the most informative and educational newsletters about our disease. Sign up to get their quarterly publication (free, print or e-mail) and I guarantee you'll learn a thing or two. Their videos and other resource articles are always bang-on.

PRO:  Their attitude about exercise and listening to science is what I've been preaching for years.

CON:  I fear they still don't have the foggiest clue who I am despite our similar goals.

Accelerated Cure Project

This is the fantastic organization behind iConquerMS, a group I volunteer for. (I encourage all MSers to be part of the cure and take part in their critical patient surveys.) Their newsletters are detailed and insightful, so much so it takes time to get through them. But it’s worth it.

PRO:  Clearly written, straightforward, and nearly always positive.

CON:  I’m continuously behind at least an issue. Or three.

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BEST MS NEWS SITES

Multiple Sclerosis News Today

For news on multiple sclerosis that is presented a competent and practical newsletter, I enjoy the weekly one from MS News Today. While it’s often spot-on with the latest MS news, consistent reporting is not a given.

PRO:  Stories are presented in enough detail in the newsletter so you can make the decision to read or not to read (no egregious click-bait) and few items slip by on their watch.

CON:  Their website is clogged with annoying popups urging you to sign up, alert bells, ads, and enough junk that it diminishes the experience of researching this disease.

MS Views and News

Stuart Schlossman started this website in 2008 and has grown it into an information powerhouse with up-to-date multiple sclerosis news and, well, views. Everything MS related is on the table here, from technical research studies to thoughts on CAM. He also does seminars, podcasts, radio, you name it. Presumably he is also one man.

PRO:  Virtually nothing MS-related will get past you, in particular if you get the newsletter. The website has lots of links to helpful articles.

CON:  Since MS Views and News cover the MS gamut, not everything is newsworthy and it’s visually a lot. The newsletter is more clickbaity than I prefer. 

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BEST MS BLOGS, SOCIAL MEDIA & PODCASTS

Blogs

MultipleSclerosis.net

There are lots of fantastic MS blogs and bloggers that I follow. I cannot list them all, and besides they may not be relevant to you personally. I urge you to find your own jam and the bloggers who resonate with you. This site is a good starting point, as it features many respected MS authors.

PRO:  The number of talented MS bloggers on the site is overwhelming. The more you read, the more you want to read, and the writers start to become your friends before you know it. 

CON:  I joined the Health Union team after years of cajoling. Or at least that's what I tell myself. So you might unexpectedly stumble on something I've written. Oh the horrors!

YouTube

Aaron Boster, MD

A respected neurologist who now runs his own clinic The Boster Center for Multiple Sclerosis, Aaron Boster has put together a robust series of videos on his YouTube channel. He dives into challenging topics, discusses medication in detail, and generally is one smart dude who I usually agree with. 

 

PRO:  His tips have extra weight coming from a specialist with over 15 years of hands-on clinical experience.

CON:  The videos for subscribers arrive frequently so they can stack up. 

MS Reporters

This is a program by Shift.ms, with MSers in charge. They match their reporters with leading academics, clinicians and industry professionals to produce great videos (I was even featured in a series!). Their video library is deep and interesting.

PRO:  There are so many videos you may need to cancel your Netflix subscription.

CON:  The founder of Shift.ms was inspired by me, and now the site is bigger than ActiveMSers. The nerve!

Twitter

Barry Singer, MD  @drbarrysinger

Dr. Singer is the director at The MS Center for Innovations in Care. He is on the ball when it comes to the latest MS news and is active in cutting-edge resources. His retweets and likes are ones to pay attention to as well. His podcasts are not to be missed.

 

PRO:  He’ll dig up news faster than I can dig it up, which is lickety fast.

CON:  Sometimes you can get trapped in conversations, but that’s just Twitter.

Dr. Brandon Beaber  @Brandon_Beaber

Dr. Beaber is the author of Resilience in the Face of Multiple Sclerosis and has made a name for himself on Twitter and on YouTube—his videos are numerous and informative. Between him and Dr. Singer you’ll find yourself covered with the latest MS news.

PRO:  I can’t decide which I prefer, his informative tweets or videos.

CON:  There’s not enough time in the day to dive into all the interesting MS news.

Facebook

None. As in zero. For every good nugget of MS advice, there is a bad one. And you won’t be able to tell the difference. Cheerleaders drown out the truth in what amounts to misinformation echo chambers, perfectly tailored to what you already believe. The “information” is not reliable and worse, may be detrimental to your health. But if you want to needle your neuro, say to your doc, “But I saw it on Facebook!” They love that.

 

Podcasts

Real Talk MS by Jon Strum

Host Jon Strum breaks down the latest multiple sclerosis news with a fresh podcast every Tuesday. He covers it all and indepth, talking to researchers, activists, caregivers, lawmakers, and more. Jon’s wife has progressive MS, so this is a stirring personal mission.

PRO:  All of his past episodes are online and easy to find.

CON:  You probably need to add an eighth day to your week to listen to all of them.

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BEST MS ACTIVITY PROGRAMS

Can Do Multiple Sclerosis

Founded by former Olympic skier Jimmie Heuga in 1984, Can Do MS teaches people with multiple sclerosis how to use exercise to help manage their life. Their lifestyle enrichment programs include education, nutrition, mental well-being, and exercise.

PRO:  

An informative e-newsletter is delivered on a regular basis and usually has at least one or two in-depth features as well as details on a variety of programs and events sponsored by the center. Solid webinars.

CON:

- Their fantastic 5-day in-person programs can be pricey but scholarships are available.

Image: Can Do MS

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