We are so thankful for the dedicated work that healthy ally, Shelley Krause, has given to the ME community. For the past three years, Shelley has kept the community informed and updated on issues affecting people with ME through the #MEAction twitter stream. Shelley first made a connection to ME as a fan of the author Lauren Hillenbrand, who has ME, and then through Jen Brea tweeting about the desperate need for public awareness and research support back in 2014. When Shelley’s not lending her support to the ME community, she works as a high school college counselor in Somerset, NJ, and publishes an inspired haiku every day. Shelley will be stepping down from her volunteer position due to a family situation, and #MEAction is looking for a volunteer interested in assisting with our twitter feed.  

What made you want to get involved with #MEAction advocacy?

Honestly, at the beginning I didn’t know that I wanted to get involved with #MEAction advocacy; I just wanted to help Jen Brea. I had read some of her tweets back in 2014 when she was still mostly in Princeton and, since I live in Princeton I thought, “I wonder if I could help?” (Actually, to this day Jen and I have never met in real life. Hope springs eternal…)

I’d loved Lauren Hillenbrand’s book, Seabiscuit, and was stunned to learn that she’d struggled with ME. Something about the lack of public awareness and research support for ME struck a chord with me and my queer activist roots; I remember being moved to support Jen’s passion and vision to be part of the fight. She had seen my work on Twitter and when we finally talked on the phone, Jen suggested that helping to curate the MEActNet Twitter account might be a good place for me to put my oar in.

Tell us a little about the experience of this advocacy work. What has been the highs and lows?

My experience with this advocacy work has been that of a steep learning curve followed by lots of gratitude for opportunities to connect and help others find and amplify their voices. It was thrilling to be part of the #MillionsMissing campaigns, and to watch the mounting excitement about Unrest as it proved to be as good as so many had hoped it would be. The lows have come from the sharings from #pwme whose flickering hope has all but guttered out, and from those heartbreaking days when we realized that we’d lost another warrior in the fight.

What is your story with ME? What was life like before you got sick?

 I have no direct personal connection to ME except for those I’ve forged over the past three years of being the lead curator of the MEActNet Tweetstream. I am a white, cis, queer woman activist who had never done any kind of organized physical activity until I ran a 5K in support of a friend in 2014, but who has since joined a rowing club and completed four sprint triathlons. My work with MEAction has deepened my sense of gratitude about my health. I post at least one haiku I can stand to share on Twitter every day. My partner – and now spouse, thanks to lesbian spitfire Edie Windsor – is a painter and photographer, and our almost seventeen year-old son is a wrestler and rock-climber. All three of us love music.

What gives you hope? Any advice?

Researchers who listen to patients give me hope. Patients and caregivers and allies who stand up and speak out give me hope. As someone who has depended on #pwme to teach me everything I know about ME, I’m not sure there’s much advice I’m qualified to give, beyond this:  Start with listening. Start with believing. And nothing about us, without us.