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JenB

Senior Member
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Just FYI, I’ve started a new hashtag on Twitter, #MEspine: https://twitter.com/hashtag/MESpine

I know a lot of folks on PR aren’t on Facebook, where a lot of the EDS, tethered cord, Chiari, CCI/AAI, etc. groups are. Hopefully this will make it easier to follow research and patient stories. Most of this is shared on Facebook, but I’m trying to encourage those patients who are comfortable sharing publicly and use Twitter to post on this hashtag.

If on Facebook, this is the group I admin on these topics: https://www.facebook.com/groups/1353765701467793/?ref=share
 

JenB

Senior Member
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@JenB - Thank you for sharing this information to Phoenix Rising. Some of our most active threads have been on CCI issues.
Facebook is where most of the discussion on these diagnoses happen. In addition to the group I admin, Facebook has many different groups dedicated to each separate diagnosis. Some of these groups have deep archives stretching 10+ years back on surgical outcomes, experiences with different physicians, etc. We're also building an entire educational module and a physician directory w/ reviews *within our Facebook group.* The idea is to prototype it there and eventually launch, perhaps, a website where some of the information can be publicly available.

We realized this leaves out a lot of people who don't use Facebook, So, as a first step, we're trying to bring more people and content onto Twitter. We should probably also mobilize more ME people who have had surgery and/or have become more expert in these diagnoses to post here on Phoenix Rising as well. What we're finding is that many people are only on one platform, so we need to do a bit of work making sure information is available and accessible, everywhere that patients are.

What I will say, though, is that for anyone seriously contemplating having surgery, I consider it requisite that you join our Facebook group, and ideally, a few others related to your diagnoses. The collective knowledge of thousands of people focused *solely on this topic* is powerful.

I know that is an awkward thing to say on another forum! I also know for some people, Facebook is not cognitively accessible. I for one hate being on Facebook for moral reasons. However, I don't see an alternative at present. I'm also seeing a direct relationship re: whether or not a person is active in our groups and their medical outcomes.