Sunday, June 03, 2018

Weekly Inspiration: ME/CFS Patients & Awareness Day

As I mentioned last week, I haven't been here on the blog this past month much, due to a crazy schedule and a huge milestone: my son's college graduation last week (he's the one with ME/CFS plus 3 tick infections). I have been working this week to catch up on everything, so this post is a little late, but I didn't want to skip it entirely.

Today's Weekly Inspiration is focused on YOU, ME/CFS patients all over the world who made this year's ME/CFS Awareness Day (and month) the biggest and best ever! Some summaries (and ideas for next year!):

#MEAction again spearheaded the #MillionsMissing campaign, which just keeps growing. Patients and their friends and families and supporters gathered in over 100 countries (!) around the world for over 300 separate actions, focused on bringing attention to ME/CFS and how its sufferers are missing out on their lives. You can read more about the 2018 campaign here, and you can read a detailed summary and see some amazing photos of the worldwide protests here, including online actions. Check out those photos - it is truly remarkable to see patients and their loved ones mobilizing all over the world!

Another organization, Solve ME/CFS, made an impact with a different kind of approach - ME/CFS Advocacy Day (May 15) on Capitol Hill here in the US, visiting offices of members of Congress and talking to them and their staff about ME/CFS and the urgent need for funding. This year, the group of patients, loved ones, Solve ME/CFS staff, and advocates met with 122 Congressional offices! That's a big leap forward from last year. You can read the summary and watch a short video about Advocacy Day here. Note that the video is not 100% accurate, in that it says that 2017 was the first time something like this occurred - Solve ME/CFS's precurser, The CFIDS Association, also hosted Lobby Days each year during ME/CFS Awareness Week. It's great to see this very valuable event occurring again. My husband, sons, and I participated in a Lobby Day with the CFIDS Association many years ago, and it was an incredible experience. If you or your loved ones can go next year, I highly recommend you do. You can also do what I did this year and participate from home by sending messages to your Congressional representatives.

Also note that you don't have to wait until May 2019 to help raise awareness of ME/CFS! The #MEAction website has a Take Action page all year-round that lists actions you can take TODAY to make a difference, usually from your own home - petitions to sign, letters to send, surveys to participate in, and more.

Congratulations to ME/CFS patients all over the world who participated in 2018 Awareness Day/Month activities, whether in person or online - you are making a difference! And today, YOU are my inspiration.

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