▪︎ ask ME cfs 🎗

#ask𝗺𝗲cfs • sharing & retweeting questions to connect #𝗽𝘄me together 🢐
#mecfs #cfs #chronicpain #meawareness 🐳💤
@artmecfs 💜 acc inspired by @askADHD ♡

[▪︎ ask ME cfs 🎗 @askmecfs]

🎗️#pwME im alive ! pls use #askMEcfs so i can try n boost n share as much as i can to connect us to the right people. we need as much help for our community as we can get ! even if it means a retweet ! it all adds up 🌍 u are NEVER alone even if u feel u are 🐳 💜 #MECFS pod 🙏✨

[▪︎ ask ME cfs 🎗 @askmecfs]

every now & then #MyalgicEncephalomyelitis starts to trend, sadly this time also was not for good & / helpful news... so i want to take this opportunity to say `Graded Excercise Therapy` is HARMFUL ‼️ #pwme #mecfs #cfs #longcovid #chronicpain

[NotRecovered @Not_Recovered]

„#MECFS has taken EVERYTHING from me. I spend probably 80-95% of the time laying down doing nothing. I am alone almost 24/7. The agony of not being able to do the things I miss more than anything, the grief, isolation and loneliness kill. …“ - @agy_lena

1/5

[NotRecovered @Not_Recovered]

„I suffer of #MECFS. Since 4 years i have to live in a bathroom (Bell 0), in darkness, 100% bedridden, starving, thirsty, isolated, mostly paralyzed, feeling pain feeling like terminal cancer. There is no help, no support. …“
- @BathroomZombie

1/3

[Meghan O'Rourke meghanor.bsky.social @meghanor]

Niche #dysautonomia/#mecfs/ #longcovid q: Does anything help you stop crashing once you start? Asking for myself :) But generally curious.

My crashes are *very* POTS-y--if I move around & it's a bit too warm/cold, etc. Fat (e.g, coconut manna) + salt seem to help a bit.

[Eric Feigl-Ding @DrEricDing]

Hey Elon Musk—remember when you said “Kids are essentially immune”? ➡️Well I got an update for ya… "#COVID19 is a *leading* cause of death in children and young people ages 0-19 years in the United States". #CovidIsNotOver #BringBackMasks #COVIDIsAirborne https://t.co/G8z4yTJPbe

[ME Association @MEAssociation]

Website #Survey: #MECFS & #LongCovid #Employment

We'd like to assess the employment status of people in the online patient community and we would be grateful if you could complete the survey,

Submit your vote here: https://t.co/vr6eUJwhyp

#pwME #MyalgicE #Disability

[▪︎ ask ME cfs 🎗 @askmecfs]

[ Sources ]
https://t.co/pqzzNtzCAd NICE
https://t.co/29BUqNvh0x PubMed
https://t.co/J5hxbPaspF World Physio

[▪︎ ask ME cfs 🎗 @askmecfs]

every now & then #MyalgicEncephalomyelitis starts to trend, sadly this time also was not for good & / helpful news... so i want to take this opportunity to say `Graded Excercise Therapy` is HARMFUL ‼️ #pwme #mecfs #cfs #longcovid #chronicpain

[ME/CFS News @MECFSNews]

People who believe CBT/GET are effective treatments for ME/CFS have an extremely incoherent view of the situation.

Taking a historical and global view, most patients with ME/CFS were never diagnosed. The time to diagnosis is typically also several years.

[Physios For ME @PhysiosForME]

@ManvBrain This is incorrect. There are currently no demonstrable efficient interventions, but lots of management choices.

Often a large part of working with people with Long Covid and ME involves trying to hold people back from overdoing things and pushing themselves

[Tom Kindlon @TomKindlon]

23 seconds
From @me_and_more_ on #PACEtrial (copied from her Instagram @m.e_an_more)

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #MyalgicE #PwME

[MariposaWarrior @LunaRivera96]

Chronicillness Warriors!
#SLE #lupus #sjogrens #fibromyalgia #Arthritis #MultipleSclerosis #cancer #rheumatoidarthritis #chronicillness #gout #CRPS #osteoarthritis #IBS #LymeDisease #MyalgicEncephalomyelitis

[Lizzy H @hopefullizzy]

@PhilM64 It’s the same email I got. I guess they’re just taking a narrow cohort of people, it also seems perhaps that if you’ve ever had depression they won’t be testing you🤷🏻‍♀️ which is incredibly frustrating given the depression was caused by being bedbound FROM the ME🤦🏻‍♀️ but there we go!

[DecodeME the ME/CFS Study @DecodeMEstudy]

The DecodeME study is now open.

You can take part now by visiting https://t.co/fEIj7SsUj3 and signing up.

You can read our full statement about today's launch here https://t.co/Oqy7L8BaVN

Thank you for your support.

#pwme #decodeme #decodmestudy #MECFS

[Hannah Davis @ahandvanish]

To #pwME and #LongCovid - is a crash the same as PEM, to you? Or are they different?

(Please feel free to elaborate in comments).

[#MEAction Network @MEActNet]

#MillionsMissing 2022 is Sept 19th at the White House* or from your home! We demand bold, urgent governmental action for the millions of people living with myalgic encephalomyelitis (ME), Long COVID, & other infection-associated, complex- chronic diseases.
https://t.co/lL4DMObStS

[ME Association @MEAssociation]

SEPTEMBER WEBSITE SURVEY: Do you have:
a diagnosis of #MECFS, a diagnosis of #LongCovid or have symptoms and are awaiting a diagnosis. Or are you a family member/carer for someone with either condition?

Please vote here: https://t.co/QYhnPJNbY9

#pwME #MyalgicE #PostCovid

[Anna (please boost pinned post) @halcionandon]

What is it like to be ill and/or disabled and have a supportive family?

It’s something I‘ve never had.
Who else gets by without family support? How?

#PwME
#MECFS
#LongCovid
#ChronicIllness
#DisabilityTwitter
#NEISvoid

[ME Research UK @MEResearchUK]

Should ME/CFS be classed as a disability? No, say New Zealand officials. ME/CFS patients & advocates in New Zealand say it is “extremely disappointing”. Read more about this news, & a discussion of when a chronic illness becomes a disability https://t.co/YIMMdvdNwd

[Winston Blick @winstoncb]

@NIHDirector @NIMHDirector @NIH Most disheartening thing: @NIHDirector knows that NIH funding is vastly disproportionate to disease burden/human suffering. Knows the implications: people will opt to end their lives. But over the span of decades, no substantial funding reform at @NIH. https://t.co/xvjl1VYbGI