▪︎ ask ME cfs 🎗 @askmecfs
#ask𝗺𝗲cfs • sharing & retweeting questions to connect #𝗽𝘄me together 🢐 #mecfs #cfs #chronicpain #meawareness 🐳💤 @artmecfs 💜 acc inspired by @askADHD ♡ linktr.ee/askmecfs Millions Missing 🎗️ Joined May 2021-
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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
„#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
„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
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.
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 medrxiv.org/content/10.110…
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: meassociation.org.uk/wepl #pwME #MyalgicE #Disability
[ Sources ] tinyurl.com/mt6xvzfm NICE tinyurl.com/sp437ez8 PubMed tinyurl.com/2hty9m4m World Physio
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.
@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
23 seconds From @me_and_more_ on #PACEtrial (copied from her Instagram @m.e_an_more) #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #MyalgicE #PwME
@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!
The DecodeME study is now open. You can take part now by visiting decodeme.org.uk/portal and signing up. You can read our full statement about today's launch here decodeme.org.uk/statement Thank you for your support. #pwme #decodeme #decodmestudy #MECFS
To #pwME and #LongCovid - is a crash the same as PEM, to you? Or are they different? (Please feel free to elaborate in comments).
#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. millionsmissing.meaction.net/protest2022/
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: meassociation.org.uk/mea-surveys/ #pwME #MyalgicE #PostCovid
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
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 meres.uk/3U3q7Xe
@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. youtu.be/f1sNPjSnUgw
R. Koivu @kokkelivekkuli1
460 Followers 3K Following
Yora @YoraVandyck
18 Followers 34 Following
Movie About M.E. @Movie_About_ME
369 Followers 2K Following A documentary that seeks to shine a light on and tell the stories of those suffering with myalgic encephalomyelitis and Long COVID.
Alisha Whittam @alishawhittam
574 Followers 619 Following Freelance Disability Journalist & Accessibility Advocate | Disability Rights • ME/CFS • Accessibility • Lived Experience | NUJ Associate Member • Liverpool
Cal @tweetercal
2K Followers 5K Following Post Epstein-Barr ME 45 years of rotting RA HD 3 Heart Attacks 5 Stent Post Lymes & Fibro Professional Flaneur of 30yrs.Medically Retired #TwitchAffiliate #Indy
Chronic Illness Chann... @Chronic_Channel
1K Followers 5K Following Youtube channel covering Chronic Illness, Universal Basic Income and Air Pollution. @chronicchannel.bsky.social Threads: @chronic_channel
Dan 🦠➡️🧠�... @Dan_Wyke
14K Followers 5K Following M.E. awareness; person-centred counsellor (not practicing); recovering poet (Rack & Waterloo Press)
▪︎ ask 𝐩𝐰 c... @askpwcfs
1 Followers 3 Following @askmecfs • sharing & retweeting questions to #ask𝗺𝗲cfs connect #𝗽𝘄me together 🢐 #mecfs #cfs #chronicpain #meawareness 🎗 art acc @artmecfs 💜
▪︎ ask 𝐩𝐰 m... @askpwme
3 Followers 3 Following @askmecfs • sharing & retweeting questions to #ask𝗺𝗲cfs connect #𝗽𝘄me together 🢐 #mecfs #cfs #chronicpain #meawareness 🎗 art acc @artmecfs 💜
Phoenix Rising @aboutmecfs
6K Followers 3K Following A community for people with Myalgic Encephalomyelitis & related conditions. Fibromyalgia, Long Covid, Dysautonomia, EDS & MCAS all welcome!
Robert S Farmer MD @RobertFarmerMD
280 Followers 2K Following Curing "incurable" diseases such as Parkinson's, chronic pain, diabetes, autism, osteoporosis, gluten allergy, et al, neuro dis., "autoimmune", MS, IBS/IBD etc.
Dr Hng + Friends @DoctorwithME
2K Followers 1K Following Author of "Doctor with M.E." Founder of Doctors with M.E. (DwME), international professional association. Views our own (me + friends) not DwME.
Runnin On Empty @RunninOnEmptee
6K Followers 6K Following Ex Wat Obs Columnist. Wipe your feet, leave your ego at the door & come on in 🤓 #Watford #Writer #Music #PWME #Myalgicencephalomyelitis #Disability #Campaigner
MEpedia @MEencyclopedia
3K Followers 697 Following The MEAction encyclopedia, crowd-sourcing the history, policy & science of the disease. Edit and improve an article today! @MEActNet
🐇 non-bibimbap @Nighteyeswol
196 Followers 1K Following they/he // 27+ // appropriate buns (excal) + pillow princess (mateus) // if i follow you now it's probably to use sky follow bridge :')
🌳🐾✝🖖🌈 @querewolves
109 Followers 322 Following autistic & chronically ill queer trans nerd called Rilian. 28yo anticapitalist and daydreamer. any pronouns. gay shitposting account
▪︎ art ME cfs �... @artmecfs
50 Followers 41 Following #art𝗺𝗲cfs • sharing art created by #𝗽𝘄me 🢐 🐳💤 #mecfs #chronicpain #chronicfatigue #artistonhiatus #meawareness #rememberme #disabledartists 💜
NotRecovered @Not_Recovered
6K Followers 240 Following We fight for research, recognition, and care for people whose lives are changed by post-acute infectious syndromes.
Illustrator Interrupt... @FranceyME
3K Followers 2K Following https://t.co/jrET531Men illustrator, writer, photographer. Career interrupted indefinitely by myalgic encephalomyelitis #MECFS @franceyme.bsky.social
Lizzy H @hopefullizzy
8K Followers 3K Following 31y/o creative, with complex health issues🤞🏼ME/CFS biomedical research. Passion for the wild, for kindness, and helping all people have a voice. Co-author✨
Smile For ME @SmileForMEUK
3K Followers 472 Following We are a charity that sends Smiles to ME sufferers and their carers to brighten their day and make them smile 😊 Registered Charity Number 1185760 🩵
The Naked Weaver @TheNakedWeaver
445 Followers 371 Following
Department of Health ... @DHSCgovuk
627K Followers 2K Following We support ministers in leading the nation’s health and social care to help people live more independent, healthier lives for longer.
Dan 🦠➡️🧠�... @Dan_Wyke
14K Followers 5K Following M.E. awareness; person-centred counsellor (not practicing); recovering poet (Rack & Waterloo Press)
Chronic Illness Chann... @Chronic_Channel
1K Followers 5K Following Youtube channel covering Chronic Illness, Universal Basic Income and Air Pollution. @chronicchannel.bsky.social Threads: @chronic_channel
Gamers for M.E. @GamersforME
56 Followers 169 Following A community of gamers that aim to raise funding for biomedical research into #MECFS by playing video games and stream on #Twitch. Discord:https://t.co/79lTMDYh6S
Runnin On Empty @RunninOnEmptee
6K Followers 6K Following Ex Wat Obs Columnist. Wipe your feet, leave your ego at the door & come on in 🤓 #Watford #Writer #Music #PWME #Myalgicencephalomyelitis #Disability #Campaigner
NHS Improvement @NHSImprovement
62K Followers 1K Following We work with @NHSEngland to act as a single organisation to better support the NHS to deliver improved care for patients.
Care Quality Commissi... @CareQualityComm
174K Followers 7K Following We are the independent regulator of health and adult social care in England. https://t.co/a72KdILSTu
Dr Speedy @DrSpeedyandME
2K Followers 2K Following #PACEtrial proves that #CBT and GET are useless #MEcfs #psychoblahblah
European ME Coalition... @EMEC_advocacy
1K Followers 69 Following Advocacy organization for ME/CFS patients and their carers in Europe
Dr Hng + Friends @DoctorwithME
2K Followers 1K Following Author of "Doctor with M.E." Founder of Doctors with M.E. (DwME), international professional association. Views our own (me + friends) not DwME.
Doctors with M.E. @DoctorsWithME
5K Followers 291 Following The global professional association for medical practitioners, scientists and researchers in the field of #MECFS, #LongCovid and related postviral disease
Dr Ben Marsh 💙 @bendymarsh
5K Followers 333 Following Neurodisability Paediatrician educating re Post viral syndromes #MECFS pwME #LongCovid @PSPforMECFS @DoctorsWithME ExeterChiefs & LFC fan. Ravenclaw. Views mine
MortenGroupOxford @OxMEDiscovery
3K Followers 210 Following Progressing research | Providing Hope | Preserving Dignity — We do biological ME/CFS research at @UniofOxford #OxMEDiscovery
ME/CFS Priority Setti... @PSPforMECFS
961 Followers 76 Following Led by patients, carers & clinicians, the ME/CFS Priority Setting Partnership will identify the top 10 research priorities to influence future research funding.
ME Research UK @MEResearchUK
6K Followers 10 Following ME Research UK is a charity which funds scientific (biomedical) investigation into the causes, consequences and treatment of ME/CFS (charity number SC036942)
ME Association @MEAssociation
19K Followers 2K Following We raise funds for medical research into ME/CFS and provide support, information & campaign for people in the UK. RPs do not necessarily mean endorsement.
ME/CFS News @MECFSNews
14K Followers 668 Following I used to post news and interesting information on ME/CFS but have retired to focus on other things.
Phoenix Rising @aboutmecfs
6K Followers 3K Following A community for people with Myalgic Encephalomyelitis & related conditions. Fibromyalgia, Long Covid, Dysautonomia, EDS & MCAS all welcome!
Solve ME/CFS Initiati... @PlzSolveCFS
12K Followers 4K Following Making ME/CFS, Long Covid & associated conditions widely understood, diagnosable, & treatable. #SolveME #MECFS #LongCovid Donate @ https://t.co/P6umwzCjKw
Open Medicine Foundat... @OpenMedF
15K Followers 1K Following OMF is fundraising to support open, collaborative research to find effective treatments and diagnostic markers for ME/CFS, Long COVID, and related diseases.
CureME - UK ME/CFS Bi... @mecfsbiobank
4K Followers 203 Following Driving clinical and biomedical research for recognition, diagnosis and treatment of ME/CFS at @LSHTM. Home of the UK ME/CFS Biobank. Advocating for #pwME.
#MEAction Network @MEActNet
19K Followers 2K Following A global network fighting for equality for Myalgic Encephalomyelitis. #MEAction #MillionsMissing https://t.co/JhhNZoFYJi
Let's Do It for ME! @LetsDoIt4ME
5K Followers 3K Following Fundraising for @Invest_in_ME charity Centre of Excellence @CofEforME programme of biomedical research and medical education for M.E. #MyalgicEncephalomyelitis
@invest_in_me (Invest... @Invest_in_ME
7K Followers 708 Following Invest in ME Research is an independent UK charity facilitating & funding a strategy of high-quality biomedical research into Myalgic Encephalomyelitis (ME)
UK/European Centre of... @CofEforME
623 Followers 183 Following Establishing and developing the foundations of the UK/European Centre of Excellence for ME which would bring discovery, knowledge, & effective treatments for ME
European ME Alliance ... @EUROMEALL
1K Followers 179 Following The European ME Alliance is a grouping of European organisations who are involved in supporting patients suffering from myalgic encephalomyelitis (ME or ME/CFS)
Science for ME online... @s4me_info
5K Followers 261 Following We are an independent, patient-led, international forum for people with ME/CFS and the carers, clinicians, scientists and advocates who support us.
DecodeME the ME/CFS S... @DecodeMEstudy
8K Followers 644 Following The world's largest study ever into #MEcfs. #pwME #DecodeMEStudy #pwME #MillionsMissing
The M.E. Trust @METrustUK
855 Followers 114 Following We have merged with @actionforME and are now known as Action for M.E. Healthcare Services, providing holistic care and support for people with ME/CFS.
Long COVID Alliance @LongCOVIDAllian
4K Followers 89 Following Research. Advocacy. Education. https://t.co/yE6W9ul1Yd
Art on a Mission @ArtMission
480 Followers 879 Following All proceeds from our store support people with #MyalgicEncephalomyelitis. Special orders, #art & #photography donations welcome. [email protected]
Physios For ME @PhysiosForME
7K Followers 551 Following A group of physiotherapists with a special interest in Myalgic Encephalomyelitis (ME) with the aim to improve physiotherapy management for people with ME
Cort Johnson @CortJohnson
11K Followers 1K Following Founder of Health Rising /Phoenix Rising - Chronic Fatigue Syndrome (ME/CFS)/Fibromyalgia/Long COVID journalist/blogger - ME/CFS/FM patient for 40 plus years
#MEAction Network UK @MEActNetUK
7K Followers 579 Following #MEAction UK focuses on campaigning and advocacy in the UK a part of the charity MEAction UK.
Center for Solutions ... @CfSforMECFS
3K Followers 131 Following @NIH funded ME/CFS Collaborative Research Center, committed to understanding the pathogenesis of #MECFS
MEpedia @MEencyclopedia
3K Followers 697 Following The MEAction encyclopedia, crowd-sourcing the history, policy & science of the disease. Edit and improve an article today! @MEActNet
▪︎ art ME cfs �... @artmecfs
50 Followers 41 Following #art𝗺𝗲cfs • sharing art created by #𝗽𝘄me 🢐 🐳💤 #mecfs #chronicpain #chronicfatigue #artistonhiatus #meawareness #rememberme #disabledartists 💜Trends for United States
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