The Severe Myalgic Encephalomyelitis (ME) Day of Understanding and Remembrance was started in 2013 by the 25% ME Group as a response to the death of Sophia Mirza, whose birthday is August 8th. An estimated 25% of people with ME/CFS are severely ill. People with severe and very severe ME are often housebound or bedbound and need assistance to do even the simplest forms of self-care. Some of them are even too ill to communicate.
Each year, we acknowledge Severe ME Day and raise awareness by elevating the experiences of those whose lives have been impacted. We also share free educational resources like those listed below:
- Our complete “Severe M.E.: Care, Rights, and Research” webinar series, co-produced with the Bateman Horne Center. This four-part series highlights caregiving, legal issues, medical care, and research as they relate to Severe M.E. Watch all four videos here.
- “Supporting People with Severe and Very Severe ME/CFS: A Resource Guide for Clinicians,” produced by The World ME Alliance, co-founded by Solve M.E. Download it here.
- A short video from the World ME Alliance, made for sharing across social media, to help raise awareness of Severe ME.
- A video by Solve Lived Experience Task Force member Hollis Mickey highlighting the special considerations to be taken when addressing pacing for people with Severe M.E. In it, Hollis notes that people with Severe M.E. are often “left out of research, recommendations, and community care.” You can watch it here or read the transcript here.
Hollis tells us:
“I am part of the 25% of people with ME who are entirely homebound and/or bedbound. On Severe ME Awareness Day, I honor all of those enduring Severe ME and their carers and loved ones. As Solve shares this video, I acknowledge that the fact I can even make such a video (even though I crashed afterwards, despite my best efforts pacing) means that I’m on the lower end of the severe ME spectrum.
Of course, so many of my fellow folks with ME cannot even speak or be exposed to any amount of light. Those with severe ME are so often left out of action, advocacy, and research. The sickest and those most desperately in need of therapeutic treatments are left out of any kind of clinical trials and find themselves without any access to care– because they simply cannot communicate without assistance, much less travel to an office or withstand a blood draw.
I am myself grateful, and privileged, to have in-home blood draws and mostly able to have telehealth and home visits from my physicians and care team. So many with severe ME do not have such access. Today, let us honor the voices who cannot be heard, those suffering in the dark who cannot be seen. If you are able, please take action on behalf of those with severe ME.”
Finally, we’re joining forces today with fellow ME organizations–The Bateman Horne Center, #MEAction, and the Open Medicine Foundation–to raise awareness of Severe ME on social media. We’re using the hashtag #UnitedForMe when promoting all of our posts about Severe ME Day, and we invite you to share those posts and use that hashtag on your posts, too.