I still cant believe a single covid infection has destroyed my life like this. I will always push for better awareness because i didnt know this was possible. But people seem willfully ignorant, even those in my life who see what happened to me. #LongCOVID #MECFS

Computer-generated test scene featuring several spheres with different surface materials, a tiled green floor, and a softly lit abstract background.

A personal project I've been working on since I've been stuck in bed. This image was generated with a ray tracer I've been writing.

In the past year, i have walked 118,000 steps. And i know about half of those were phantom steps my watch counted. Thats about the amount i would walk in 2 weeks before i got sick... still grateful to be able to get up occasionally. #MECFS #longcovid This is about 300 steps/day average.

I miss my life. The holidays with #MEcfs were brutal... Here's to the new year bringing better understanding and hopefully treatments

Is it another cruel irony that my very health relies on, well, my health getting to a point where i can work? How will i afford my meds and doctor otherwise?

And i know im supposed to be quippy on this site, but it was and still is devastating. I am watching my life savings vanish and desperately trying to build enough baseline to work before it does...

The term ‘health insurance’ in the US is a sick joke. I had a good job and good coverage when I got long covid.

I became too sick to work and lost both my income and my insurance. Literally the exact scenario I thought I was insured against.

A Twitter thread discussing long COVID and vaccination. The first user, username Biology, says, “Stop calling a bedbound person lucky, you weirdo.” Another replies, “It could have been worse if he had had the injection.” Biology responds that vaccination lowers the risk of severe illness and long COVID, adding that no one can know for sure. The final reply mocks Biology, saying it’s impossible to know if someone would have been more or less sick and calls them a moron.

I think, unfortunately, this is what keeps me coming back to Twitter. The rampant ignorance and science denial. Somehow it is addictive.

This person questions how we can know the covid vaccine reduces disease severity. As if the scientific papers don't explain their methods in excruciating detail.

I cannot stand Twitter but it seems like Im always sucked back there instead of here. Not sure why that is, I generally prefer the people and self feed moderation I can do on this app

My one wild and precious life and Im losing it to #LongCovid

Tell me, what is it you plan to do
with your one wild and precious life?

If health ever returns to me, i will spend mine thankful for every day, helping those still in need.

So many of us still trapped.

#pwME #MEcfs

Twitter seems to shove the crazies down your throat a lot more than bluesky does

Its silly of me but i get jealous of other people in the #longCOVID and #MEcfs community who still have a loving partner. The crisis my illness created was too much for my relationship to handle, apparently. I still miss them all the time. I also miss the closeness and the warmth of loving someone.

Cartoon image of a man standing behind a podium, arm extended pointing forward, with a speech bubble that reads "If P is false, I will be sad. I do not wish to be sad. Therefore, P is true." Below the image in a margin text reads "There. Now you can skip 99% of philisophical debates." Image credit to SMBC

MFs trying to explain that the pandemic is "over" #longCOVID

I try to be professional on this platform but there are times, like now, when it hits me hard on a visceral level that we are in the midst of a catastrophic global public health crisis and it seems, as a species, we've somehow decided that ignoring it is the best plan we've got.

Im living a ghost of a life just waiting for improvement or an effective treatment to be discovered. I live the same day every day in bed, unable to even entertain myself how i wish. I desire independence. I desire health. Not sure how much longer i can do this #LongCovid #mecfs

Bell pepper in the fetal position surrounded by the following text: "Me watching all the long covid funding get pulled, committees canceled that have taken decades of activism to create, the ending of 45 studies that were close to being finished, big pharma declining the use of their drugs in mecfs trials, knowing there's nothing I could possibly do to help this & knowing i don't have the strength to advocate again"

#longCovid #mecfs credit to thesaltpacket on reddit
/instagram

Im in a similar situation today myself

Putting it mildly

Two months out from me being in my bed for THREE YEARS.

Just want to chime in. im normally a lurker here, but i love your content!

Chart of Health-Related Quality of Life Mean of EQ-5D 3L scores Population - 0.85 Then the following diseases range from 0.79 to 0.62 in descending order: Prostate cancer Sleep apnea Breast cancer Inguinal hernia Heart AMI Abdominal hernia Diabetes I Colon cancer Heart angina Heart IS Diabetes II Stroke Lung cancer Rheumatoid arthritis Chronic renal failure Sclerosis Schizophrenia COPD Bleeding ulcer Depression ME/CFS is 0.47

It’s wild this isn’t front page news. If NIH had a study where 1 in 22 people who’d had Covid then had a stroke, it’d be a five-alarm fire.

But the average health-related quality of life for ME/CFS is worse than stroke—or literally any other condition it’s ever been compared to.

Everyone taking me at face value so ill just say this: im not listening to my doctor. He is uninformed. I know very well what could happen and am doing my best to listen to my body and not overexert ❤️

Yes sorry i withheld the 🙄 thought my sarcasm would come through. I am not listening to my doctors advice. I dont even think it would be possible for me to walk every day i would crash after the first walk... I use the visible app and a garmin watch to help track myself. Thanks for the help tho :)

My doctor suggested i go for walks every day (Ive been bedbound for months now), whats the worst that could happen? If i get PEM its not like ill die.

#pwME #longcovid #mecfs

The reality is even darker: top scientists have been shouting from the rooftops, publishing countless studies on the dangerous nature of Covid / Long Covid and yet, society turns its back, ignoring the warnings.

Had an mri a couple of days ago. Had a serious reaction to the contrast (which i know is rare). Currently crashing from the effort of it all. Because I tried to get healthcare... #longcovid is so fair

It pains me that after so long, we still have no good answer... I feel their desperation in my gut

50+ ways to show up for people with Long Covid and ME/CFS. Nobody left behind! The clean air club cloud logo is in the bottom right.

Attention abled people: it's time to step up and support our loved ones and comrades who have Long Covid and ME/CFS!!

There are over 400 million people living with Long Covid today, and many millions more living with ME/CFS.

Pick one or two from this list and make it happen!

PEM, fatigue, racing heart for no reason

My gp referred to PEM as post exertion fatigue during my last visit...