I realize for many Facebook and similar social media networks are the most accessible, and given the size of the groups, it’s certainly capable of being a fantastic resource with the amount of data available. As I’ve posted before though, I haven’t found a community I feel comfortable with there, and have found other communities and resources I prefer much more. Whether it’s a result of better moderation, smaller more intimate communities, or even just sites with well-regarded physicians providing incredibly well-vetted data.
Below is a list of the resources I most often frequent, and give a brief explanation as to why I find it a noteworthy resource.
Of all of the regular ol’ discussion forums, Shift.ms has in my experience had the most friendly, helpful and low-key community of over 37,000 users. Shift.ms is a registered UK charity and moderation seems to be top-notch.
This is new to me but pretty promising. The community seems friendly, though at the same time the social media vibes are giving me feels. I definitely appreciate the articles and the uplifting vibe.
While Reddit itself is fairly infamous for toxic behavior, they key is to find a like-aligned community. The MS subreddit, in particular, is well moderated, users generally helpful, and has a no-tough-love policy. The community welcomes patients, the undiagnosed, as well as caretakers (though there is another community specifically for caretakers). Excellent place to ask questions.
This is a MS community Discord channel that also happens to be linked off of the subreddit. While I don’t believe they’re directly affiliated, the Discord community is lovely, helpful, and kind. There is a social calendar including an optional monthly VC. It’s a pretty busy server, but if you’re looking for something more in the text-based/messenger style of communication, it’s a great option.
This blog is fairly nuanced. The posts are “divided into three levels. These allow you to know instantly whether a post is going to be plain English, or highly technical, and you can decide whether or not to read it, or whether you need to set aside more time to go through it” which makes the blog pretty accessible to all, and is a fantastic resource otherwise if you want to keep up to date on the state of MS, research, presently COVID, etc. The blog itself has an excellent page, “New to this blog?” that gives a brief rundown as to how the site functions and their purpose.
Dr. Boster runs the Boster Center for Multiple Sclerosis in Columbus, Ohio. On his Youtube channel he hosts live Q&A sessions, and posts updates on new MS information, conference videos and more. A pretty charming fellow, quite relatable and charismatic.
Similar content to Dr. Boster, Dr. Beaber, the author of “Resilience in the Face of Multiple Sclerosis“, is quite the character. I adore his energy and presence, with a side of OMG those thumbnails. He manages to crack me up even when the subject matter is on the heavier side. A total pleasure.
Let’s have some fun.
I’m not sure if I’ve mentioned it before, but I’ve felt blessed over the last couple of years to be a patient with the UCSF MS Clinic. As a result, their research is near to my heart. The trials listed here are often available to those outside of the SF Bay Area as well. The trials extend well past MS into many other conditions. Maybe worth a look if you might be interested in contributing to their research.