Soon after my wife Julie was diagnosed with ME, I got involved organizing our Facebook group and working on MillionsMissing and then with helping MEAction’s Colorado group ever since. Julie has a “mild” case of ME, for what that’s worth. Mild in that she isn’t housebound and has periods of activity almost every day. But ME being ME, our lives were still turned upside down and she cannot work even part time or be in large groups for long.
I didn’t do all this work for Julie though. We thought for years she had MS and, other than small donations for MS fund raisers as thanks for the help their support groups gave her, I didn’t do any grand support or organizing. My immediate family has a lot of conditions: we have people with autism, depression, OCD, degenerative disk disorder and Tourette’s Syndrome. But I do not organize or advocate on behalf of any of those conditions.
When I watched Unrest and learned the severity of ME and the incomprehensible neglect by the CDC and NIH, I decided I needed to organize and help the #MillionsMissing as this is truly a fight for social justice. I’ve always been involved in various social justice projects and I realized that this is a very deep need, with comparatively little action happening around it.
For comparison, when we were in the MS community, there were several active support groups in the area for us to chose from and we got monthly magazines and newsletters from the MS world and had our choice of the world’s best doctors at the Anschutz medical center. MEAction’s global and national network has done a great job of starting to provide this for the ME community, and I’m so happy to have been able to help the Colorado branch of it get off the ground and become successful.
I had organized non-profit events before so thought that the combination of that and Julie’s comparative health compared to other PWME made it a good fit and so I jumped right in. I’ve been thrilled to see the community grow so well and to have made many great friends in our virtual community and on the planning committee.
As someone with ME who often doesn’t have the energy and brainpower to take on nonprofit organizing, I truly appreciate what you’re doing, John. I’m sure I’m not alone when I say I have deep gratitude for your efforts and all you’re doing to help our community! We need people who are healthy and motivated, like you, to help us gain more recognition (since most of us are unable to do this ourselves). ❤
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