The Real McCoy

New followers here’s an intro on me and what I post about: I have #SevereMECFS and am housebound. (It sucks) I have an MD, but don’t practice medicine. Other health problems took me out during residency. (Seriously, my life follows Murphy’s Law)

“The fact that young people are even having to consider euthanasia due to the abysmal situation created by the scientific failures, the political neglect, the medical gaslighting, the absence of care, the lack of safety is unacceptable to me."

It is ridiculous how much better my brain functions after IV fluids. The brain fog and pain just 💨 poof 💨 gone. #MECFS

I felt I really needed to write about Rowling's essay, not because it's new, but because it's so poisonous and ugly that it felt like sanitizing her not to acknowledge it on my trans news site.

1) There's a new critical review of patient-reported outcome measures in ME/CFS and Long Covid. The paper argues that trials often fail to include important symptom domains such as post-exertional malaise, dysautonomia and mast cell activation symptoms.

Hi. I, a trans woman, am the Executive Producer of this show. I wrote the question. He called trans girls men. He has now said it in three different places in the past week.

your yearly PSA: want to do something positive wrt the ecosystem while saving yourself a bunch of time and effort? skip the bagging and just rake leaves into a pile wherever convenient (bonus points if you do it under a tree). www.nps.gov/articles/000...

My favorite photo of Maggie. She passed away 5 years ago, but this was such a fun Halloween. The costume startled/spooked people because in person the colors matched too well. People legit thought we had multiple dogs tied together.

Happy Halloween! Are you into the spooky season? We know it can be hard to join in when living with ME or when a lot of your time is spent as a caregiver, but we have some good options for you. Thanks to Orion, CoRy Wysz 💤 and Steven! https://ow.ly/IaA25100OB4 #Halloween #Spoonie

I'm late with the warning this year folks: but October slide is here! Be cognizant that your interactions on social media may not be taken the way you mean, and take frequent breaks, yourself! See below.

MEAction is launching its largest #MillionsMissing campaign yet – “Pace to the Capitol!” For the next 7 months, MEAction is bringing ME out of the shadows and into public places across America as we pace to the U.S. Capitol! LEARN MORE: www.meaction.net/pace-to-the-... #PaceToTheCapitol

In case you hadn't seen it, yet: #CDC has created a new survey that removed #LongCOVID and #MECFS, both of which have previously been measured. There are other disability- and chronic-illness-related questions missing, too. You can leave a comment here: 🧵 www.regulations.gov/commenton/CD...

Accidentally left my windows open. I was in the room the entire time and didn’t notice it dropped to 38 degrees 🥶 #MECFS really messes with my temperature recognition and regulation.

This is the disease for which I research and advocate: #MECFS. Even mild presentation is life-changing, and this is what severe looks like. People are surprised so many of us were athletes. They want to believe this can only happen to people who were already unwell. www.bbc.com/sport/athlet...

People mention LLMs a lot in terms of "increasing accessibility" And as someone with intermittent cognitive disabilities, I *really* want to highlight how much work it is to sort through AI slop to try to find accurate information

Okay, this isn’t history based but… I once crashed out over the physics in the world of Bubble Guppies (yes the kids’ show). Like how do you get stuck up in a tree when you can swim and you’re in water?!? Anyway, still get made fun of for this to this day.

A post about me and my ME. #ME #pwME #CFS #MEcfs #MillionsMissing

“You’re fighting the illness, but then you’re fighting every health professional.” Hannah was struggling to digest food and losing weight, but healthcare professionals thought she had an eating disorder. 8 years later, this is still happening to people with severe #MECFS.

“The harm you have done is incalculable. It’s not me who has been spreading great harm around the world. It’s you, mate.” George Monbiot on being accused by Prof Michael Sharpe of “spreading” #LongCovid by writing about it and why he started writing about the #MECFS scandal.

Check out our conference poster on defining PEM: positivenutrition.ie/wp-content/u... Coauthors: @naomidharvey.bsky.social @ciarawrightphd.bsky.social @sunsopeningband.bsky.social Full paper currently in draft! 🧵

I was one of a number of patient scientists and advocates who was interviewed for this sympathetic, open access paper "Patient's knowledge, doctor's ignorance: The production of knowledge about myalgic encephalomyelitis" www.sciencedirect.com/science/arti... #MEcfs #PwME #epatient #epatients #CFS

if I died and went to hell, it would take me 5-7 business years to realize it wasn't just ME/CFS

Why do people with ME claim to know more about the medical aspects of their disease than their doctors? Because the mechanisms that usually ensure doctors' knowledge fail in the case of ME, and sick people have created mechanisms of knowledge production and dissemination to pick up the slack.

“I was just horrified… The most heartbreaking stories… Treatment is absolutely appalling for patients.” @georgemonbiot.bsky.social speaking to @davetuller1.bsky.social about the hundreds of messages he received from people around the world with #MECFS about their experiences of treatment.

(1/3) Worth remembering that the NHS clinics delivering CBT/GET generally failed to inform #MECFS patients about potential harms and typically did not record adverse events. (Aside: Patients often report there is resistance to recording harms, so we do not know the true extent of it.)

Ror Preston: Whilst we know the average quality of life for ME/CFS patients is amongst the very worst for chronic diseases, I think in advocacy the true disaster that is severe / very severe ME has been significantly underplayed. New @wecrunchme visual on this topic 💙 #SevereME #MEcfs #PwME 1/

Master post of each talk re: the Stanford #MECFS Community Symposium: 🧪 Talk 1: bsky.app/profile/exce...

Friends, a major problem in the demographics of ME/CFS studies is the absence of Black participants. If you know of any Black adults with ME/CFS, please suggest that they complete this survey. I have completed it and it is relatively untaxing. Thanks!

Karen Gordon Update Sign the petition www.change.org/p/save-karen...