During the initial years of having Myalgic Encephalomyelitis (ME), it is common to watch all your interpersonal ties slowly dissolve. Being in my early 20s, those around me craved excitement, adventure, and new experiences. Those things I desired too, but little of which I could do or offer in my current state of health.
La desaparición de mi capacidad de leer extensamente es una de mis mayores pérdidas. Lo intento, pero las páginas se petrifican. Ahora debo contentarme con unos pocos párrafos; algunos días con un par de líneas.
If you are hosting a screening of Unrest in your community, you will want to reach out to your local press about covering the screening. Below are some training resources to help you prepare to speak to the media. These tools were developed by #MEAction for the #MillionsMissing Day of Action in Sept. 2017 in
Listen to the audio version recorded by Anna Ruddock @annalouruddock Cindy Downey wrote this editorial as a response to the opinion piece, “The Emotional Toll of Not Being Heard,” published by Christina Baltais. Artwork by Cindy Downey. Thank you, Christina, for your eloquent comments about the emotional toll from the wall of stigma that surrounds ME.
You can now read about the details in two published pieces.
New tour dates announced: September 16 in Minneapolis and November 4 in Boston. Join us!
The demise of my ability to read extensively is one of my greatest losses. I try, but pages petrify. A few paragraphs must do me now; some days a couple of lines. It’s an issue many #pwme wrestle with, and contributes to our sense of separation.
This story won’t be particularly unique or shocking to anyone living with ME. Every single one of us has a plethora of stories like this, and far worse than this. It has happened so many times over the last 11 years. What shocks me is the degree to which it still occurs and manages to affect me, no matter how much time I spend trying to advocate for ME.
August 12 was an amazing day at OMF’s Community Symposium on the Molecular Basis of ME/CFS at Stanford University.
Severe ME patients publish paper questioning central findings of Dutch CBT/GET trial
