Eggplant.place

1y

#chronicillness #autoimmune #chronicillness #chronicillnesshumor #chronicillnessmemes #autoimmune #autoimmunememe #spooniememe #spooniehumor #fibromemes #fibromyalgia #spoonie #mecfs #longcovid #chronicillnessmemes

2 frame comic
1st frame: [10 years ago] A monster (chronic illness) enclosing a girl "what is happening?"
2nd frame: [now] *a girl eating cereal with her monster* "oh hey buddy, what's up"

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1y

#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

#MEcfs #SevereME #Art #MyalgicEncephalomyelitis

"Severe ME Artists Project 2024" is written in white on a multicolored background.

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1y

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

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1y

"#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

https://www.medscape.co.uk/viewarticle/long-covid-chronic-fatigue-similarities-are-uncanny-2024a1000d17

#MEcfs #CFS #PwME @mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome

Long COVID & Chronic Fatigue: The Similarities are Uncanny
Annie Lennon | 16 July 2024
An estimated two million people in England and Scotland were experiencing symptoms of long COVID as of March 2024, according to the Office for National Statistics. Of these, 1.5 million said the condition was adversely affecting their day-to-day activities.
As more research emerges about long COVID, some experts are noticing that its trigger factors, symptoms, and causative mechanisms overlap with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).

ME/CFS is characterised by severe fatigue that does not improve with rest, in addition to pain and cognitive problems. One in four patients are bed- or house-bound with severe forms of the condition, sometimes experiencing atypical seizures, and speech and swallowing difficulties.

Despite affecting around 250,000 people in the UK and around 2 million people in the European Union (EU), it is a relatively poorly funded disease research area. Increased research into long COVID is thus providing a much-needed boost to ME/CFS research.

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1y

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!

#MEcfs #LongCovid #NEISvoid #PEM #StopRestPace #Humor

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350d

Comic by howbabycomic.com. Perfect for people with chronic illnesses and disabilities

#chronicillness #mentalillness #autoimmune #chronicallyill #chronicillnesshumor #chronicillnessmemes #autoimmune #fibromemes #fibromyalgia #spoonie #mecfs #disability

A comic with the first 4 panels, the woman is having a hard time building something out of blocks. In the last panel, you can see that she made a platform out of blocks and is wobbling and having a hard time staying up on the platform. Another person who has a cube he is standing on says 'why is it so hard for you? just do it like I did.

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323d

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

Teach ME, Treat ME Campaign by the Numbers:

- 19 medical education events took place across the U.S. and U.K.
- 402 clinicians attended in-person events.
- 100,000 views of the Mayo Clinic Proceedings paper, with thousands of new views during the campaign!
- 421 clinicians took the Mayo CME or got credit for another CME as part of the initiative!
- Researchers and clinicians from five organizations expressed interest in ongoing med ed partnerships: Mayo Clinic, Georgetown, Emory, Brown, and University of Montreal.

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328d

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

watercolour photo of a woman with dark hair holding her head in her hands. There’s a shadow behind her and white text that reads
Pregnancy Will Likely Kill You but You May Want Babies! A look at misogyny in medicine, bodily autonomy, infertility and the struggles women face with not being trusted to make decisions for their own body. WWW.DISABLEDGINGER.COM

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311d

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

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243d

In case you missed it:

Video (about 26 minutes long) which summarizes "the greatest medical scandal of the 21st century" - the treatment of ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome).

Video here:

https://www.youtube.com/watch?v=RiwX9Y0NbiQ

Full transcript on Medium here:

https://medium.com/@abrokenbattery/me-cfs-scandal-explainer-eb4c1bfb7464

#MEcfs #PwME #MedEd #MyalgicEncephalomyelitis

Video summary, from YouTube:
"A number of academics, experts, and journalists have characterised the treatment of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) as a scandal, with George Monbiot going as far as calling it 'the greatest medical scandal of the 21st-century.' This video provides an introduction and overview, highlighting key events in the story."

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230d

📣 Reminder: #MEAction is giving away 2 copies (one paperback, one audiobook) of the book "Pillow Writers Anthology 1: Near-Life Experiences"

Their "Chronically Complex" podcast has extracts from the book:

https://www.meaction.net/chronically-complex-meaction-podcast/

Deadline for entry is December 15, winners will be selected the next day

I can't find an announcement on the #MEAction website but here's a link to what they posted on Bluesky:

https://bsky.app/profile/meactnet.bsky.social/post/3lbkjfa4w6c2t

@mecfs

#MEcfs #PwME #NEISvoid #Writers #Books #Giveaway

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229d

Request from Phoebe Petrovic:

"Chronically ill/disabled/long covid-havers and #pwme:
I want to hear your stories.

Have you been denied care or adequate infection control protection while getting care? Are you a worker denied the ability to protect yourself with an N95? What barriers have you faced to equal treatment?

Please get in touch if you've experienced this in the USA. My contact information is in my bio."

https://bsky.app/profile/phoebepetrovic.bsky.social/post/3lcv4desaas2v

#MEcfs #PwME #LongCovid #POTS #ChronicIllness #Disabled

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222d

From The Sick Times:

"My Mom was disabled by ME, but I didn’t understand until I developed Long COVID. I wrote an apology letter to her."

Jacqueline E. Luciano describes how her experience with Long COVID led her to better understand her mother’s experience with ME decades earlier. This essay is the first essay in the new the Color of Long COVID series, supported by the Disability Visibility Project.

https://thesicktimes.org/2024/12/10/my-mom-was-disabled-by-me-but-i-didnt-understand-until-i-developed-long-covid-i-wrote-an-apology-letter-to-her/

1/2

@mecfs @longcovid

#MEcfs #LongCovid #Disability

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215d

"The Arctic Plague Ship That Disabled A Best Selling Author"

https://www.donotpanic.news/p/the-arctic-plague-ship-that-disabled

"…a trip participant tested positive for COVID the day before the trip and was told by the organisers she was still welcome to come on the trip …

And now Isabel [Kaplan], who is 34 years old, has long covid. The disease has a vast array of presentations, and Isabel has the more serious version, her symptoms akin to those suffering from ME."

@longcovid @mecfs

#COVID #LongCovid #MEcfs #CovidIsNotOver

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194d

"COVID-19 Triggers ME/CFS"
by Suzanne D. Vernon

https://batemanhornecenter.org/covid-19-triggers-me-cfs/

"…we found that among participants infected with SARS-CoV-2, the incidence of ME/CFS—defined using the Institute of Medicine (IOM) diagnostic criteria—was 15 times higher than pre-pandemic rates"

"531 participants met ME/CFS criteria, translating to a prevalence of 4.5% among those infected—nearly eight times higher than uninfected participants"

@mecfs @longcovid

#COVID #MEcfs #LongCovid #Research #CovidIsNotOver

The RECOVER study, which has collected data from more than 15,000 adult participants over the past four years, provided us with an unprecedented opportunity to determine whether ME/CFS occurred after being sick with COVID-19 and the overlap between ME/CFS and Long COVID. In a paper published today in the Journal of General Internal Medicine, we found that among participants infected with SARS-CoV-2, the incidence of ME/CFS—defined using the Institute of Medicine (IOM) diagnostic criteria—was 15 times higher than pre-pandemic rates. Of the 4,515 participants who enrolled within 30 days of contracting COVID-19, 73 developed ME/CFS at least six months post-infection. In total, 531 participants met ME/CFS criteria, translating to a prevalence of 4.5% among those infected—nearly eight times higher than uninfected participants. This prevalence is five times higher than pre-pandemic estimates and underscores the severe and lasting impact of COVID-19 on public health.

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133d

From Ben HsuBorger at #MEAction:

"Why I Joined a Stand Up for Science Rally"

https://www.meaction.net/2025/03/12/why-i-joined-a-stand-up-for-science-rally/

"I have lived as an ME/CFS 'spoonie' for the past 20 years after I got a virus and never recovered. I’ve spent much of the past 10 years of my career advocating for ME/CFS research at the NIH"

"I don’t want to see the same scientific harms that have happened in the ME community become even more widespread across all of science"

@mecfs

#MEcfs #StandUpForScience #Protest #Resist #USPol

A white man in a respirator and a red shirt that says "Still sick, still fighting" sits in a manual wheelchair. He holds a protest sign on his lap that says "Fork off, Elon" and "Spoonies for Science." In his right hand he holds an oversized fork and in his left hand he holds an oversized spoon (props that refer to the protest sign).

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114d

News from #MEAction - planning for #MillionsMissing 2025 (May 12)

"If you are interested in organizing a protest, gathering in a park as a community or making art, please join one of our protest organizing meetings on Thursday, April 10"

Meeting 1: Thursday, 4/10, 12pm PT/3pm ET
https://us06web.zoom.us/meeting/register/EHwZzzubSpqIi31vM1VRNQ#/registration

Meeting 2: Thursday, 4/10, 3pm PT/6pm ET
https://us06web.zoom.us/meeting/register/2hriH4c1RU6VbSGbEBrjHA#/registration

Details:
https://www.meaction.net/2025/04/02/millionsmissing-2025-sending-out-an-sos/

@mecfs

#MEcfs #PwME #LongCovid #PwLC #MEAwareness #May12 #MyalgicEncephalomyelitis