Behind closed doors in the dark, Margot, @StillViv, @DaschaEliza, Ilse, @AnilvanderZee , Lara talk about life with severe ME. @LouCorsius talks about Céline.
You can also print the Mayo Proceedings document (8 pages) and bring it to your next doctor appointment. I gave a copy to my cardiologist. I know he read it because he referred to it in my chart notes! 😁
"We are excited to announce the kick-off of #MillionsMissing 2024 – our ongoing campaign to Teach ME and Treat ME by educating medical providers across our nation’s hospital systems and medical schools about myalgic encephalomyelitis (ME)."
#activityPubHelp it also looks like some of the alt text has stopped coming thru after my plug in update!
Naptime since I’m sooo exhausted but if anyone has recommendations on how to fix this I’d be very thankful , especially since I want to make sure the #MillionsMissing week art is accessible. Will try a few more tests later tonight :/
Epistemic injustice is harm done to a person which is related to their own knowledge, or personal experience. It is said to be a concept closely related to stigma – sadly, something commonly experienced by those with ME/CFS.
I wouldn’t have the energy for the whole event so plan to come in just before the chat over free tea/coffee/water & biscuits. Do say hello if you see me. 👋
"… we are asking the community to submit a quick video recording sharing how long it took to receive a ME diagnosis, to be featured during the campaign week.
This recording will highlight why there is a need for more medical providers to be educated about ME…"
Full email includes script suggestions & other details:
«It’s the greatest medical scandal of the 21st century. For decades, patients with ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome) have been told they can make themselves better by changing their attitudes. This devastating condition, which afflicts about 250,000 people in the UK, was psychologised by many doctors and scientists, adding to the burden of a terrible physiological illness.» written by George Monbiot. https://www.monbiot.com/2024/03/27/first-do-no-harm/ #mecfs@mecfs#MillionsMissing
"Teach ME Treat ME will be here in the next few weeks! While many of you are preparing to host medical education events, we know that thousands of you will be participating from home!
We are beyond excited to share the Show Up From Home Toolkit! This toolkit lays out an array of ways you can take action from home based on your energy level."
"We are less than a month away from launching #MillionsMissing 2024, and we are thrilled at the success we’re already seeing with the campaign!
We know the impact of #TeachMETreatME will be HUGE with thousands more clinicians across the country being educated on how to diagnose and treat the ME. Some of these clinicians will become the specialists we so desperately need."
Jaime Seltzer of #MEAction gave her first "Teach M.E., Treat M.E." talk yesterday, part of a campaign to educate health care workers about ME/CFS and Long Covid.
Lots more talks scheduled for May and June.
This whole initiative is led by people who have ME/CFS and Long Covid.