#pwme kết quả tìm kiếm

#LongCovid #pwME #Pots #EhlersDanlos

The Intolerableness of Suffering #MECFS #pwME hpd.de/artikel/unertr…

Initially, I could manage leaning over the bath to have it washed. Then even that required more stamina than I had. So this is my new set up. It’s very much a working prototype, but being able to lie back & have my weight fully supported is bliss. /2 #HairWash #pwME #pwLC

#pwME It's NOT living in bed. It's living as a medical patient. Ointments, powders, pills, inhalers, nebulizer - organizing it all, maintaining it - is a job in itself. BP cuffs, Sp02, bed pads, diapers, etc. I'm really looking forward to my permanent catheter. #MELife

3/ "The top 200 probes identified through feature importance analysis were found to be distributed across multiple chromosomal regions, suggesting a polygenic signature of ME/CFS" #MEcfs #PwME

UK ME Association 2024 Annual report has been published. Largely a financial report, it also includes the Trustees report with some information on developments and plans including research funding. …te.company-information.service.gov.uk/company/023619… #MEcfs #PwME

UK Action for ME The recording from the 2025 Annual General Meeting (AGM) is now available on YouTube youtube.com/watch?time_con… . Duration 1 hour 9 minutes. The Annual report and accounts for 2024/5 are published on their website actionforme.org.uk/resource/actio… #MEcfs #PwME

UK Action for ME Big Survey 2025 The 5 yearly survey of people in the UK with ME/CFS will open on Monday 13th October. It has been developed by AfME in collaboration with Dr Katherine Cheston at Durham University. actionforme.org.uk/research-campa… #MEcfs #PwME

The latest edition of Clinical Medicine, a medical textbook, places ME/CFS in the General Psychiatry section, claims ME/CFS is partly psychological and recommends the PACE trial as further reading! Medical students are going to be taught this. #pwME margaretwilliams.me/2025/is-elsevi…

We sold some #BedForSevereME badges at the Carer's Assembly on Friday - thank you for the support 💙🙏 'Profits' (surplus) from badge sales are going to @SmileForMEUK and @mecfsbiobank Buy yours NOW in good time for Oct 29th! Link 👇 #pwME #MEcfs

So while I was gone I did a thing… #PWME #MECFS @Oshunsprite @cfs_jo @Talmandaniel

Thank you @VoicesWales for inviting me to speak at the Carer's Assembly on Friday. I got a t-shirt! 🥰🫶 I spoke about carers through the lens of ME Foggy Dog and Stripy Lightbulb's campaign work for severe M.E. #PwME #SevereME #MEcfs #CAVCA25

My mother just bursted loudly into my room. Opened up my blinds and balcony door. Coughed (no mask on , ever) and left. As if I’m not even here. THIS IS TORTURE. 😔🤍 #pwme #mecfs #severeme

Said to be by an org lead at the Carer's Assembly after my talk. Lovely compliment, thank you 💙 *Foggy* World domination!!! #pwME #MEcfs

This is something advocates say to each other privately all the time, but it somehow means far more from people outside our bubble. 'You lost 50% of your functionality when you got M.E? You're a powerhouse NOW. I can only imagine what you could achieve if you weren't a #pwME' 1/

A recommendation for #pwME able to watch tv. I watched #VictoriaBeckham yesterday. netflix.com/gb/title/81749… It had many overlaps with my own life- - Incessant bullying - Reinvention/change in identity in response to life events - Constantly trying to prove myself (to me) 👏🙌

Her. #severeme #pwme #longcovid #mecfs #dysautonomia #cci

"Spend a Week with M.E." 10-minute video youtube.com/watch?v=2wVcZ7… From the October 2025 AMMES Newsletter #MEcfs #PwME

Long Covid = Betrayal by God, Family, Friends, Government, Doctors and even by Your Own Body… #LongCovid #pwME #Pots

Starting to wonder if this explains why M.E. always felt like a cover-up. Just asking questions. #pwME #mecfs

This was my body when I got covid-19 and started having severe symptoms and PEM and doctors suggested to WORK OUT MORE and EAT HEALTHIER. (6 years CrossFit + 3 track n field athlete). 4 years later and I’m completely bedbound. #mecfs #pwme #longcovid #severeme

That’s certainly not what I expected my room to look like at 27 yrs old. (Mind you the commode is being refused to me for YEARS and was gifted by a friend). #pwme #severeme #mecfs #longcovid

I think I’ll never be able to accept this. #severeme #mecfs #pwme #longcovid

I’m fucking burning alive. #pwme #mecfs #longcovid

I got this commode toilet chair gifted. My parents have been denying one to me for years. But it’s too late now. I can barely stand up for it and I have severe PEM after it. I barely exist.I know I need diapers but they won’t agree or help me with that. Fucked up. #severeme #pwme

I used to have curtains, blinds, everything fully open and sleep with my face towards the window so that the sun hits me in the morning. Last 4 years the sun hurts me so much due to severe - very severe me. Can’t believe this is still me. #mecfs #pwme #severeme #longcovid

So while I was gone I did a thing… #PWME #MECFS @Oshunsprite @cfs_jo @Talmandaniel

#MyalgicEncephalomyelitis #PwME

Following a series of successful social media posts, we have developed an A to Z poster showing the alphabet of common symptoms, experiences, and comorbidities of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). Free download here: meassociation.org.uk/lk72  #pwME…

Had a txt from a contributor asking how I dealt with seeing so much suffer & it's true that sometimes I was v shaken but mainly I was angry. What other disease affects 400,000 but is virtually invisible? #pwme #mecfs #millionsmissing

I see conversations about recovery in ME/CFS, and I’d like to share my own experience. I’ve lived through every severity of this illness—from (very) mild to extremely severe. At its most severe, in my opinion, it feels like a completely different disease. 1/13 #MECFS #pwME

My hands. It feels 100 worse than it looks. #mecfs #longcovid #pwme

For 3 years, I’ve been documenting the hidden stories of #PwME these images were from the very start of the project #documentaryphotography #widelux #ilfordhp5 #blackandwhite

(1) I have an inside stye and my eye is swollen for 4 days now. I told the nurse to send my images of to an opthalmologist. The prescribed antibiotic drops and cream and hot compresses. The nurse messaged me “this happens because of the constant darkness”. SERIOUSLY? #mecfs #pwme

She was buried Not under the earth But beneath crushing pain And deadly policies Her dreams and future erased Forced to wear her pain like a second skin Isolation soon became the only constant Her small room the only place left to exist. #PainCareCrisis #grief #pwME

🚨 Brain retraining grifter. #pwME #LongCovid

‼️Trigger warning: talks about suicide ‼️ Yesterday I received the news that my fellow Dutch ME sufferer Dennis Dekker passed away. Please raad my call for action on Facebook and please share!! facebook.com/10006151166319… #myalgicEman #pwme #myalgicE @GrandeBettina

giftster.com/gift/public/Y8… I’ve created a wishlist for me to have but also if anyone doesn’t want to donate money but buy something instead. Again thank you to everyone who has supported me/ is supporting me. #pwme #mecfs #severeme #longcovid

What looks like a girl laying still and resting is in reality a pure torture 24/7. I wish people listened and didn’t only judge by what “it seems” and what they perceive. Artwork by: kate_drawingcolor on Instagram. Inspired by my symptoms. #mecfs #pwme #longcovid

Post Exertional Malaise NOT just exaggeration of "Boom and Bust", energy averaged out over time out. My PEM in blue below shows I am wrecked for a MUCH LONGER period than the exertion over my baseline. Why do even the most recent official documents get this wrong? #pwME #pwLC