mecfs
#MEAction has announced their Severe ME Artists Project for 2024 in recognition of Severe ME Day on August 8th.
Anyone who identifies as having severe ME can participate. Artists can submit past artwork created before they got sick.
Submissions are due by July 25.
See link for full details:
https://www.meaction.net/2024/06/26/severe-me-artists-project-2024/
@mecfs
Video from today's Washington Post Live event, "The looming public health challenge of long covid"
https://www.youtube.com/watch?v=XcyzaV12bsg&t=1038s
Speakers include Jaime Seltzer, #MEAction’s Scientific Director, and patient advocate Chimére L. Sweeney, founder and director of The Black Long Covid Experience
(there are more speakers but I thought folks might recognize these two)
@mecfs
@longcovid
#LongCovid #PostCovid #MEcfs #PwME #PwLC #MyalgicEncephalomyelitis #PublicHealth
"#LongCOVID & Chronic Fatigue [Syndrome]: The Similarities are Uncanny"
Great to see this article in Medscape which includes comments from numerous UK-based researchers and charity representatives
#MEcfs #CFS #PwME @mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome
I never thought I'd end up with a chronic illness where the most useful health advice comes from an old Vaudeville joke:
Patient: Doc, it hurts when I do this!
Doctor: Then don't do that!
Comic by howbabycomic.com. Perfect for people with chronic illnesses and disabilities
#chronicillness #mentalillness #autoimmune #chronicallyill #chronicillnesshumor #chronicillnessmemes #autoimmune #fibromemes #fibromyalgia #spoonie #mecfs #disability
Update on the "Teach ME, Treat ME" medical education campaign from #MEAction :
https://www.meaction.net/2024/09/04/teachme-treatme-we-cant-believe-these-numbers/
"We tallied up some numbers from our 'Teach ME, Treat ME' campaign to educate clinicians and medical students about ME, and the results are fantastic!
The campaign has been a herculean effort by #MEAction staff and our 16 incredible teams across the U.S and U.K., and we are beyond proud!"
@mecfs @longcovid
#MEcfs #LongCovid #MedEd #CME #HealthCare #MayoClinic #TeachMeTreatME
When I was 21…I was told I was likely infertile and that pregnancy could and probably would kill me. I was denied a tubal ligation and/or hysterectomy because I “might meet a man who wants kids”.
It was a horrifying look at how deep misogyny runs in medicine - and how little women are trusted to know their own bodies and make decisions for their health.
I eventually had the hysterectomy- but only once it became an emergency because I was bleeding to death and they couldn’t stop it. The surgery was more traumatizing and dangerous because I wasn’t afforded the time to adequately prep.
I’m grateful to have survived - and sharing my story in the hopes it helps other women feel less alone. I hope it challenges doctors and healthcare workers to think differently about how they treat women and realize that not ALL of us can become mothers (and not all of us WANT to either).
At the end of the day - a man wouldn’t have had these issues if he wanted a vasectomy. He would have been trusted to know his body. He wouldn’t have been treated like an incubator and I sincerely doubt many men are asked whether they’ve considered that they could meet their “dream woman” and she might be angry about their sterility.
There’s no stigma about the childless cat man.
https://www.disabledginger.com/p/pregnancy-will-likely-kill-you-but
#CovidIsAirborne #CovidCautious #CovidIsNotOver #CleanAir #WearaMask #Disability #LongCovid #Ableism #Denial #CleanAir #Pandemic #PublicHealth #InfectionControl #Eugenics #SafeHealthcare #N95 #Respirators #Spoonie #Discrimination #Dysautonomia #mecfs #pots #mcas #communitycare #chronicillness #keepmasksinhealthcare #endometriosis #abortion #womenshealth #reproductiverights #gynecology #misogyny #infertility #childlesscatlady #bodilyautonomy
I just had my first doctor tell me to ‘take off your mask so I can see your pretty face.’
I was there for an issue with my FEET. There was absolutely no reason for me to remove my mask.
I don’t know how much of this was misogyny and how much was related to pandemic politics (ie perhaps this doctor resents having to mask)… but I was incredibly uncomfortable with his remark.
I declined - as politely as humanly possible - and the whole tone of the appointment changed. I didn’t even get a diagnosis - I was told that the issue on my ankles was ‘not as ugly as I think’ ( I didn’t think it WAS ugly) and sent on my way.
I waited 18 months for this appointment - and the ‘issue’ is likely related to my vEDS and possibly severe. Multiple other doctors have expressed concern but said I had to wait for a specialist.
When patients are treated this way - it causes harm. It causes a distrust of the medical system. I can’t just ‘get a second opinion’ when the first one took 18 months.
When I’m less angry I may write an article about this - because patients (especially female presenting) deal with this crap FAR too often.
In the meantime - this experience underscores why we must always have an advocate with us in healthcare settings. It shouldn’t be this way - but it is.
My article on how to be the best possible advocate for a disabled patient: https://www.disabledginger.com/p/how-to-be-an-effective-advocate-for
#CovidIsAirborne #CovidCautious #CovidIsNotOver #CleanAir #WearaMask #Disability #LongCovid #Ableism #Denial #CleanAir #Pandemic #PublicHealth #InfectionControl #Eugenics #SafeHealthcare #N95 #Respirators #MasksWork #MaskUp #Spoonie #Discrimination #Dysautonomia #mecfs #pots #mcas #communitycare #wearamask #chronicillness #keepmasksinhealthcare #MaskBans #NoMaskBans #bullying #CleanAirClassrooms