By Kyle Kenney
Science Communications Intern
Many of you may remember the now-retired CFIDS Chronicle, the Association’s first publication which began in 1987 as a way of keeping members of the CEBV Support Group in Charlotte, North Carolina, up-to-date on research and group activities.
As the Association expanded in the 1990s and 2000s, the Chronicle did the same, reaching almost 20,000 readers at its peak. It was referred to numerous times as a “lifeline” for those suffering from CFS, but the growing importance of maximizing research funding and cost-cutting that resulted from economic recession led to the Chronicle‘s transformation in 2009 to SolveCFS, a publication that successfully accommodated readers’ preferences and resource priorities. The importance of electronic outreach blossomed in the 2000s as well.
As the Association moved in a different direction, so did its publishing strategy. Thankfully, though, the Association’s commitment to provide its supporters with the latest news on CFS treatment, research and management is alive and well today. In fact, there are several ways to stay connected, informed and savvy about the things that matter most to the CFS community. Here are seven of them:
“Like” us on Facebook!
Go to our Facebook page and click the “Like” button. Here you’ll find the most current stories on CFS, and you can see what others are saying about CFS and CFS research. We also regularly post links to informative websites, along with pictures and videos. Since launching our Facebook page in February 2009, it has fostered a community of more than 7,000 individuals. In 2011, Facebook friends helped the Association secure a $25,000 prize from Chase Giving during the spring challenge. Last week, in the run up to the May 12 awareness day, friends helped us reach out to 58,284 individuals by sharing materials on their Facebook pages.
Follow us on Twitter: Along with our Facebook page, our Twitter account is a great way to receive content we may not have on our website or blog! You can find us @PlzSolveCFS and join the conversation using the hashtag “#MECFS.” To date, we’ve tweeted 1,091 microblogs and attracted nearly 1,100 followers. You can also follow our scientific director, Dr. Suzanne Vernon @CPR4CFS, which stands for “citizen powered research for CFS.”
Visit our YouTube page: With 32 videos and almost 600 subscribers, our YouTube page has gotten over 60,000 views since its 2009 debut. The Solve CFS Channel is where you’ll find the latest Association video content. Click “Subscribe” on the YouTube tool bar (on our page) and you’ll be notified by e-mail each time a new video is added. Check out our most popular video, “What Would You Do?”
Visit the Solvecfs website! This website is a one-stop shop for the most current and reliable information about CFS-related research being conducted by top-flight scientists worldwide. The site is approaching its one-year anniversary and the milestone of 200 posts! You can subscribe to new posts by email too; each time a post it added, it is sent to you by email. To sign up, just click this link and submit your email address.
Subscribe to Research1stNews, our monthly e-newsletter you can subscribe to by e-mail.
Catalysts in Action is an e-newsletter dedicated to mission-focused news about people who help power the Association. You can receive Catalysts in Action by donating any amount to speed discovery and transform the way that CFS research is conducted.
You will also receive the latest copy of SolveCFS with a donation of any amount, and you may request a copy of SolveCFS by e-mailing firstname.lastname@example.org with “SolveCFS” as the subject heading. The latest issue, spring 2012, was mailed to donors on May 2.
Kyle Kenney is the newest member of the Solve ME/CFS Initiative ’s staff, working as a science communications intern this summmer. Kyle is a sophomore industrial engineering major at the Georgia Institute of Technology and a native of Charlotte, North Carolina.May 17, 2012