#pwme 검색 결과

I think I might be going into hibernation #pwME

Every #TiltTableTest should also measure blood flow to the brain. I'm not a big fan of them anyway for different reasons. They're dangerous for some people, like for example #pwME because of PEM. And that's almost never taken into consideration. 1/ #dysautonomia #POTS #OI

*Foggy* *flexs legs*..... Right....49 birthday 'bumps' coming up. Who's with me?! 🥳 #pwME

Relationships between fatigue, cognitive function, and upright activity in a randomized trial of oxaloacetate for myalgic encephalomyelitis/chronic fatigue syndrome frontiersin.org/journals/neuro… Screenshot from the Science for ME weekly update #MEcfs #PwME

UK MEA Governance Review Stage 1 Announcement Autumn 2025 meassociation.org.uk/2025/10/the-me… Screenshot from the Science for ME weekly update #MEcfs #PwME

I can't brain retrain my way out of a DVT in my left common iliac vein that is choking off flow. I'm tired of disabled and chronic illness people being taken advantage of. #Disabled #LongCovid #pwME #POTS #NEISVoid #Spoonie #ChronicPain #CPP

#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

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/

‼️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

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

#MyalgicEncephalomyelitis #PwME

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

🔥 Please share - Very important care campaign for anyone with ME #pwME #pwLC ♥️💙🫂 "Campaigning for ME (Myalgic Encephalomyelitis) to be medically managed safely, to protect families from permanent disability or death from neglect of the illness" justice4me.uk

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

🚨 Brain retraining grifter. #pwME #LongCovid

*Foggy* *flexs legs*..... Right....49 birthday 'bumps' coming up. Who's with me?! 🥳 #pwME

From Lives We Cannot Live: 24–28 Sept, Oxo Tower Gallery. #pwme #documentaryphotography It takes nearly 6 months to arrange a shoot with Shreya. She was ill, I was ill and then I was ill again...

Last night, the ME Association held a prestigious event to launch ‘Lives We Cannot Live,’ a photographic exhibition by documentary film-maker and photographer Jeremy Jeffs. Read more about the event here: meassociation.org.uk/h6md #MECFS #pwME #LivesWeCannotLive

We’ve been asking people how the exhibition makes them feel …. #mecfs #pwme

This article looks at the science behind the recent announcement of a blood test for ME. news-medical.net/news/20251007/… #pwME #pwLC #MyalgicEncephalomyelitis

These last few days though! #PainCareCrisis #ChronicIllness #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

There have been so many times that I’ve felt a bit of a fraud when shooting #Pwme. Although I’ve been diagnosed twice, 30 years apart, my #mecfs is so mild it feels like a different disease. Not today. Hitting v hard. Thinking of P/w #severeme

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

Hello friends #pwME #pwLC, I'm trying to find a sustainable way to have my hair washed. Does anyone have a nifty hack to lie back & have their hair washed over the bath? I'm thinking a cushioned bench with some sort of back support 👇. I need to be able to just lie there 😅#MECFS

Some prints ready for the exhibition. These are nearly 1m wide and show #pwme in the rooms where they spend most time. #MECFS #millionsmissing

#MEAction is asking you to take action to save telehealth NOW! You can call or email your member of Congress. To make this action easier, we have drafted up a sample script you can use: meactions.org/telehealth #Telehealth #PwME #LongCovid #MECFS #Congress

People without #MECFS have been asking why this project is called Lives We Cannot Live. #PwME #socialdocumentary #documentaryphotography