ME patient. Spouse with LC & ME.
Fund marginalized diseases. Plow under suburbia. Build walkable, accessible towns and cities.
Sep 23 • 4 tweets • 1 min read
For those interested in #MECFS history, I’ve digitized 32 ‘90s era issues of CFIDS Chronicle, a newsletter published by @PlzSolveCFS. For ease of access, I’ve also compiled them into one highly compressed PDF so you can search the lot. #CFIDSChronicle 1/drive.google.com/drive/folders/…
The Chronicles are a valuable historical record consisting of reporting on science, policy, and advocacy; articles, narratives, and poems exploring life with #MECFS; book reviews, letters to the editor, and other materials. 2/
Aug 8 • 8 tweets • 2 min read
On #severeME day, I want to share a quote from Eric Moore, who took his own life in 2011. His mother Billie shared this quote in testimony to #CFSAC on suicidality that we collaborated on in 2012. 1/
I think of it often when I think of the cruelty of this disease, the tragedy of its erasure, and the decades-long governmental refusal to respond in a proportionate way: 2/
Sep 25, 2023 • 9 tweets • 2 min read
Being belittled by medical providers wouldn’t be so bad if it was just a discrete event — You walk in, get treated like shit, and leave. Instead, it tends to follow you. Other providers and support systems picking up that cue. 🧵
Like that Seinfeld episode where Elaine innocently asks her doctor to erase an old note labeling her “difficult.” And he responds by terminating the appt. and writing a note in her chart that blackballs her from getting care.
Jan 9, 2023 • 9 tweets • 3 min read
A P.A. doing intake recently informed me ME isn’t an accurate name and suggested I shouldn’t be using it, least of all in a medical office. Shortly after admitting he’d heard of CFS, but not ME/CFS. 🧵
His argument is problematic, as I responded, because ME/CFS is the widely agreed upon name, used in the ICD, by CDC and others. It’s also not the only name poorly reflective of its distinctive pathologies (though those get a pass because, well, we’re used to them).
Jan 9, 2023 • 8 tweets • 3 min read
Some articles on ME/CFS are ignorant, but @nataliesurely‘s @newrepublic piece last month is so shockingly bad, so suffused with CBT/GET Brigade rhetoric that it’s hard not to believe it’s an exercise in bad faith. 1/7
The familiar tropes are all there, from the suggestion patients disparage mental health disorders and turn to illness because it gives them identity to misleading descriptions of what PACE offers and represents. 2/7
