In memory of Maeve Boothby O’Neill b.1994   ME. 2008   d. 2021 Maeve died too young.  ME did not kill her.  Medical neglect did.  She was born a scholar and, by t…

A video exploration of the impossible decisions ME/CFS patients have to make, constantly having to decide between two options that will both make our health worse. And how much more difficult these d...

In January this year I spent 3 weeks in the hosptial for a pretty serious infection and related conditions. My experience there was at once a surprise and a discouraging setback that added to my symptom burden. In this post I relate my experience and thoughts on what it means for all of us.

The True Horror Of ME/CFS

My Jtube broke finally and I have to go to the hospital tomorrow and I’m feeling stressed...It is so hard seeing the real world and really feeling it and then coming back to my room and closing all th...

To all those living in silence and darkness. Today we take a moment in silence and darkness to honor your courage, your bravery, your resilience, your strength, and we acknowledge your profound suffe...

That is ME/CFS. We live with world champion symptoms with no idea what is causing them or what will happen with those symptoms or what our future holds. We hold onto hope but are often crushed by th...

I see people protesting the rights of many marginalized groups and important issues. I see people up in arms over injustices faced by people all around the world…BUT WE ARE DYING. Not to mention suf...