ME/CFS Quotes @mecfsquotes
Spotlighting ideas, news, and research related to the debilitating disease ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome) #MECFS | by @winstoncb instagram.com/mecfsquotes Joined April 2021-
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After a long wait, our longitudinal long COVID study is finally published in @NatureComms: nature.com/articles/s4146…. We find a skeletal muscle alterations in patients with #longcovid, which worsen with exercise. 1/n
For UK-based people with ME/CFS, a final opportunity to take part in this major study: decodeme.org.uk/portal
2023: "We didn't know anything about it." 2021:
News: NIH study identifies features of Long COVID neurological symptoms dlvr.it/SnbcT2
We will announce a biomarker for #MECFS and #LongCovid very soon. A very interesting piece of the puzzle to unfold in coming weeks. Knowingly I did not use the word 'Novel Biomarker' as a lot is known about it and that is actually a very good news. Fingers crossed!
Friends, we are once again putting out a big call for ANYONE who has had COVID and FULLY RECOVERED (no persistent symptoms) in the NEW YORK CITY area to assist us with a #LongCovid study. If this sounds like you, please contact us at [email protected]
Today for #LongCovidAwarenessDay, I ask that if you're an ally & haven't said something publicly about #LongCovid, please do! Doesn't have to be on social media, can be with friends/fam. Could be something you learned or a finding from this overview. nature.com/articles/s4157… 1/
My views on covid seem to have become a bit, well—radical. Please allow me to explain. I did not start out radical. I am lucky to have a settled, establishment-adjacent, career. Three years ago, on the eve of the pandemic, I trusted the establishment.
Today is #LongCovidAwarenessDay This was my last solo backpacking trip before I got sick in 2020. I was 27 & walked 40 miles in two days. Now I’m lucky to make it through a half day of work. I’ve had two surgeries & am one of millions disabled by #LongCovid #ME
Today is Long COVID Awareness Day. For anyone this may resonate with today on this day of recognition: We hear you. We see you. We care. Let us keep on advocating for better care, a focus on diagnosing patients & the urgency for research. #LongCOVIDAwarenessDay
On #LongCovidAwarenessDay many of us- including myself- have been sharing stories of loss. @resiapretorius & I would like to offer the community some positivity & hope. Here’s a sneak preview of our preprint about 91 #LongCovid patients treated with triple anticoagulation 1/n
It'sME(Jaime) @exceedhergrasp1
20K Followers 5K Following Director of Sci & Med Outreach, #MEAction Stanford Med #ME, #EDS, #POTS, #LongCOVID Views my own [email protected]
Hannah Davis @ahandvanish
60K Followers 4K Following Research, algorithmic music, machine learning/AI, anti-bias in AI data. #LongCovid research & advocacy @patientled. they/them. DMs rarely checked
Tom Kindlon @TomKindlon
14K Followers 579 Following With ME 35 years (29 yrs severe). 95% of posts on #MEcfs/#LongCovid/#chronicillness. 26 publications in peer-reviewed journals. @IrishMECFSAssoc trustee 27 yrs
ME/CFS News @MECFSNews
15K Followers 712 Following News, interesting information and commentary on ME/CFS. My bluesky account is @mecfsnews.bsky.social Looking for paid ME/CFS related work.
Christoph Ströck @cstroeckw
7K Followers 455 Following Soon, people will look back in disbelief at what has happened to patients with #MECFS and #PAIS | @weandmecfs co-founder
Dan Wyke 🦠➡️�.. @Dan_Wyke
13K Followers 6K Following M.E. patient, advocate, person-centred counsellor (see link), recovering poet
Anil van der Zee © @AnilvanderZee
9K Followers 825 Following Former professional ballet dancer | Bed/sofa-bound M.E. patient | Using Twitter to raise awareness for #MyalgicE | #art2cureME #pwme #millionsmissing
Adam @ABrokenBattery
6K Followers 1K Following Severe ME patient currently on a 10% battery, the gas goes out more than I do. I also compile ME/CFS Awareness videos.
Billy Hanlon @bhanlon15
12K Followers 11K Following Director of Advocacy & Outreach, Minnesota ME/CFS Alliance | Long COVID Ally
Katy B @KatyBruce108
5K Followers 5K Following Myalgic Encephalomyelitis - M.E + POTS 38 years Donor to the @mecfsbiobank & @DecodeMEstudy Please watch https://t.co/rPfzhZQ6po #pwME
Dr Asad Khan FRCP FRA.. @doctorasadkhan
28K Followers 3K Following Lung Dr on pause since Nov 20 #LongCovid #POTS #MCAS #HSD #pwME #Aotearoa Views my own; Retweets≠endorsements #freepalestine #TeamClots ZIONISTS WILL BE BLOCKED
Natalia @NataliaHodgins
7K Followers 1K Following Disabled writer with words in @Refinery29AU, @ABCNews, @PublicHerald | Activist | Feminist | MECFS | Follow on IG - same handle
Sibylle Dahrendorf �.. @sibylle_berlin
6K Followers 3K Following Once a filmmaker now stuck in horizontal hell | #SmallFiber #BigPain #POTS #MCAS #CCI #Lyme #FQToxicity #ME I Stop denial of #ComplexChronicIllnesses I
Bea is Chronically Pe.. @Be_Kinderr
11K Followers 3K Following Chronic Illness Researcher. Science of #MECFS #LongCovid #POTS #EDS #MCAS CCI SFN Lyme etc & How They Connect🕵🏻♀️Scientist/Advocate [email protected]
PwME 4 bioMEdical res.. @ValeBodi
4K Followers 2K Following Surviving #MyalgicE #AAG to tell the story, patient&advocate w/ a JD, into: MEdicine, Social justice & the Arts, Human neutrino/MEdical apolide/gnarled Pacer
Carole Bruce @CaroleBruce17
6K Followers 5K Following Severe #ME for 32+ years. Ex- psychotherapist. Daughter, severe ME 38 years. Eldest son, MS. Apart from that ❤️Art, people,nature, books, some music.
Winston Blick @winstoncb
3K Followers 901 Following #MECFS post-viral #longhauler | ally of #LongCOVID | quoter of @mecfsquotes | previously, 🚵🏼♂️ 🏂 🏃🏻🏕️ 📖
Richard Vallée @richardvallee
3K Followers 5K Following I play language. Mostly irreverent. Debugger. AI, global warming, integrity, healthcare & science. Chronically ill. #MillionsMissing #pwME #MEcfs
Tess Falor, Ph.D. | @.. @tessfalor
9K Followers 5K Following 🚀Space physicist➡️#MECFS researcher🧪 Founder - Renegade Research @renegaderes - RemissionBiome @remissionbiome ✨Serendipity Meets Preparation✨
Joel Cyr @J0ELCYR
7 Followers 60 Following
Treena Jensen @jensenink
42 Followers 1K Following
Edith C Laflamme @edithclaflamme
89 Followers 571 Following mère au front-féministe-citoyenne-écolo-engagée, coordonnatrice, idéatrice congrès Écologie de l'enfance (tweets personnels)
Claudia F. Lbrc @claudia_lbrc
12 Followers 259 Following
AllyAlly @AllyKeyLime
2K Followers 3K Following FAR UVC 222nm, masks for doctor/dentist/hospitals/public transpo/pharmacies/grocery. Organs matter. CFS. MCS. Protect Animals. Ⓥ XRP🪙
Eveliina @hevehuve1
555 Followers 767 Following Caught in a limbo with #COVID-19 and aftermath since the beginning of the pandemic. Physiotherapist, dreaming of hiking and freedom from #Longcovid.
Pauline boyd @princesspenny62
416 Followers 4K Following Busy trying to save my life from a Fatal disease from Toxic mold in my Rental home. Owner fatally poisondd me and Retailiaton horroibly for the last 5 years
J Serra Hoffman @SerraHoffman
18 Followers 58 Following
Yuling Chow @yulingchow
441 Followers 3K Following Eats shoots and leaves, not necessarily in that order || Filmmaker/DP/Videographer from Hong Kong || Appalled by our response to Covid-19 & climate change
Dom @domsalisbury
1K Followers 1K Following Ex-atmosphere/ocean scientist. Very ill with M.E #pwME. Patient advocate (when able). Interested in how we live. Open-minded, but always sceptical.
Luana @Luana03187933
3 Followers 108 Following
David Bolitho @davidbolithoco
560 Followers 5K Following
Dunyaeirene @Dunyaeirene09
24 Followers 167 Following
Andy @AndyBayo_
351 Followers 2K Following Chronic Fatigue. Orthostatic Hypotension. Heat Intolerance. Impaired Cognition. Possible CCI. Possible brainstem compression. #mecfs #mespine #severeme
Boris Sevo @81736378zz
0 Followers 206 Following
Rebecca Lee Williams @bec_lee
250 Followers 1K Following Writer. Fmr Artist Manager, Publicist. Disability, Chronic & Invisible Illness Advocate. ME/CFS & comorbidities. Intersectional Feminist. She/Her. Gadigal Land.
Rebecca Ryan @DrRebeccaRyan
1K Followers 1K Following Gastroenterologist & Hepatologist. Disorders of the Gut Brain Axis. Treating Long Covid, POTS, MCAS and hEDS.
Mary Kay @mklamarche
164 Followers 333 Following Credentialed evaluator. Public service manager. Various interests including health & well-being. Tweets are my own. Retweets are not endorsements.
The Black Box: Awaken @TheBlackBoxFilm
634 Followers 2K Following A new experimental short film about a young person with #ME/#CFS, trying to achieve his potential. Director @RHolbourn Producer @ThomJacksonWood
curiouser and curious.. @SueSueCurious
2K Followers 2K Following Still looking for a nice Twitter bubble
elveetee.bsky.social @hayleybbear
562 Followers 2K Following annoying little sister of wildlife twitter • LVT 🐾💉• too many cats • i do art commissions and pet portraits
Prodigal Hoosier @ProdigalHoosier
6K Followers 6K Following Migratory Hoosier. IU Alum talking about things we weren’t supposed to talk about growing up.
Nathan Luna @NathanLunaAKTN
2K Followers 2K Following Visual Artist | Writer | Queer 🏳️🌈 | AuDHD | Activist | Long Covid | ME/CFS | POTS | NR-AxSpA | Fucking Tired | (he/him)
E. Viloqui @eviloqui
166 Followers 430 Following Writer. Discourse Analyst. Equity Consultant (diversity, accessibility, equality, inclusion). Martial Artist. Editor. Gamer. Let's make a kinder world.
BendyHEDS&Co 🐴🦓.. @luvenice_h
4K Followers 5K Following Helping awareness of #EDS & Hypermobility Spectrum #HSD = #POTS #MCAS #MECFS #CSFleak #SIH/IIH #Stenosis #CCI #TMJ #ON/TN #GP #CRPS #SFN & more ⬇GPtoolkit⬇
NOLACreoleChick @CreoleChick
415 Followers 2K Following Every day is a struggle. #MECFS since 2005 #MCAS #NEISvoid #HOH 8th Generation #NOLA native #LouisianaCreole #MedicallyDisabled Probable:#Chiari #hEDS #CCI
Alexis @alexis___me
197 Followers 175 Following Consultant in Health Protection (Public Health) | Severe ME, Long Covid and POTS patient | Advocate | Father | Husband to @clglbrt
Lisa Kahane @LisaKahane
406 Followers 655 Following Landscape, Portrait and Social Documentary Photographer, derailed by post-viral sequelae
Shosha Capps 😷🎨.. @shoshacapps
280 Followers 3K Following Appalachian expat academic adjacent #environmentaljustice #disabilityjustice #COVIDisNotOver Caregiver to twin toddlers and/with #PwME
Charley ☕️ @CharleyBurt1
7K Followers 6K Following Animal lover, Queens girl. Independent #BBBCrew 🚫DM’s #adoptdontshop VOTE 🗳 #ThanksTG ☕️Spread kindness
Julie Spratt @SprattJuli76091
2 Followers 25 Following
Ror Preston @RorPreston
2K Followers 555 Following Lead Data Scientist @visible_health 💙 | Organiser @wecrunchme 🗺️ | #MECFS since 2018 | Own Opinions
NickyProctor @NickyProctor
1K Followers 4K Following Writing up my #PhD in coach learning & development @LeedsBeckett and campaigning for better healthcare #MEcfs #POTS
LA2LAGURL @La2Arceri
425 Followers 2K Following Questioning everything : 𝚖𝚎𝚗𝚊𝚐𝚎𝚛𝚒𝚎 𝚘𝚏 𝚠𝚑𝚊𝚝 𝚠𝚊𝚜: spiritual & narcissistic abuse survivor #CPTSD: severe #ME/CFS: POTS, CCI 20yrs
Caroline @unbridledflame
1K Followers 938 Following
AlanEdin @AlanLaing4
296 Followers 992 Following LGBT Choir member @LoudProudChoir, avid reader (work in publishing) music, theatre and dog lover🐶🌈🐻🏳️🌈🏴
Chris #Unite2Fight �.. @ungenesbar
762 Followers 421 Following LongCovid & ME/CFS activist // Core Member of @U2Fight_World // creator of https://t.co/O3DTXjWiPd // gay
Max Wassermann @MaxWassermann2
1K Followers 1K Following 20+ || life paused due to #MECFS since 2013 || likes video games and cats || team member of StartaMEvolution
LiegendDemo auf dem W.. @LiegendDemo
2K Followers 1K Following Hier werden alle Infos bezüglich der LiegendDemos und Trauergänge bekannt gegeben. 11.05.2024 große LiegendDemo in Berlin! Plakate und Handouts s. Link⬇️
Roger That @ThabunnyRoger
384 Followers 3K Following Striving toward success. Hope it goes well 😏👍🏼☝🏼🙏🏼
It'sME(Jaime) @exceedhergrasp1
20K Followers 5K Following Director of Sci & Med Outreach, #MEAction Stanford Med #ME, #EDS, #POTS, #LongCOVID Views my own [email protected]
Hannah Davis @ahandvanish
60K Followers 4K Following Research, algorithmic music, machine learning/AI, anti-bias in AI data. #LongCovid research & advocacy @patientled. they/them. DMs rarely checked
Bhupesh K Prusty @BhupeshPrusty
15K Followers 68 Following A passionate molecular virologist who believe in patient oriented scientific research. Using viruses to understand human existence. Science is for society.
Janet Dafoe @JanetDafoe
15K Followers 220 Following Caregiver for very severe ME/CFS son, advocate and fundraiser for End ME/CFS PROJECT at OMF and CFSRC at Stanford. The rest of my life is on hold...
Tom Kindlon @TomKindlon
14K Followers 579 Following With ME 35 years (29 yrs severe). 95% of posts on #MEcfs/#LongCovid/#chronicillness. 26 publications in peer-reviewed journals. @IrishMECFSAssoc trustee 27 yrs
ME/CFS News @MECFSNews
15K Followers 712 Following News, interesting information and commentary on ME/CFS. My bluesky account is @mecfsnews.bsky.social Looking for paid ME/CFS related work.
Dan Wyke 🦠➡️�.. @Dan_Wyke
13K Followers 6K Following M.E. patient, advocate, person-centred counsellor (see link), recovering poet
Martin Hippe @pausedME
7K Followers 474 Following East Westphalia by Nature ⎮Lawyer by Profession | #Musikrecht | #MECFS | @Mirame_Arts | No medical advice!
Anil van der Zee © @AnilvanderZee
9K Followers 825 Following Former professional ballet dancer | Bed/sofa-bound M.E. patient | Using Twitter to raise awareness for #MyalgicE | #art2cureME #pwme #millionsmissing
Jonas R. Kunst (@kuns.. @KunstJonas
17K Followers 725 Following Professor of Psychology @UniOslo. Past @Yale @Harvard @UiB. Founder @Advances1n. Father. Views are my own. @kunstjonas.bsky.social @[email protected]
davidtuller @davidtuller1
10K Followers 2K Following Senior Fellow in Public Health and Journalism, Center for Global Public Health, UC Berkeley. My academic position is largely funded by donations from patients.
Adam @ABrokenBattery
6K Followers 1K Following Severe ME patient currently on a 10% battery, the gas goes out more than I do. I also compile ME/CFS Awareness videos.
Sten Helmfrid 🇺�.. @StenHelmfrid
7K Followers 206 Following Ph.D. in physics, also interested in mathematics and science theory. Loves to apply general knowledge of science to other fields, for example ME/CFS.
Billy Hanlon @bhanlon15
12K Followers 11K Following Director of Advocacy & Outreach, Minnesota ME/CFS Alliance | Long COVID Ally
Putrino Lab @PutrinoLab
34K Followers 382 Following We make people (and technology) better at Mount Sinai. Opinions are my own.
Dr Asad Khan FRCP FRA.. @doctorasadkhan
28K Followers 3K Following Lung Dr on pause since Nov 20 #LongCovid #POTS #MCAS #HSD #pwME #Aotearoa Views my own; Retweets≠endorsements #freepalestine #TeamClots ZIONISTS WILL BE BLOCKED
Whitney Dafoe @DafoeWhitney
10K Followers 38 Following Severe ME/CFS patient and advocate. Photographer, filmmaker, artist, creative. Sick since 2004, bedridden since 2013. Never. Giving. Up. ✊
Resia Pretorius @resiapretorius
27K Followers 218 Following Distinguished Prof: Physiological Sciences, Stellenbosch Univ, South Africa; Honorary prof: Univ of Liverpool Research: coagulation, inflammation
Bea is Chronically Pe.. @Be_Kinderr
11K Followers 3K Following Chronic Illness Researcher. Science of #MECFS #LongCovid #POTS #EDS #MCAS CCI SFN Lyme etc & How They Connect🕵🏻♀️Scientist/Advocate [email protected]
Derya Unutmaz, MD @DeryaTR_
290K Followers 4K Following Professor, medical scientist, immunologist @jacksonlab research in aging & cancer immunotherapy. Interests: #longevity #robotics #AI #Scifi #tech #space🇺🇸🇹🇷
Braeden Charlton @BraedenCharlton
542 Followers 554 Following VU PhD Candidate, mitochondrial and long Covid research, occasional athlete
Rob Wüst @RobWust
6K Followers 771 Following Assistant-Professor Muscle Metabolism at Vrije University Amsterdam, Netherlands. Interested in skeletal muscle function in health and disease
Gunnar Gottschalk @ggottschalkPhD
417 Followers 221 Following ME/CFS and Long-COVID Researcher Scientist and Executive Director Simmaron Research Inc.
Simmaron Research @RedefiningMECFS
4K Followers 397 Following Official Twitter account for Simmaron Research, a non-profit scientifically redefining ME/CFS. Visit our site to learn more.
Avik Roy @AvikRoy74969264
568 Followers 461 Following CSO Simmaron Research @RedefiningMECFS; Co-Founder/Sci. Director of Sotira Scientific: Professor (adj) @UWM; Neurobiology; ME/CFS; Drug design and development
Massachusetts ME/CFS .. @MassMECFS
2K Followers 790 Following To improve the lives of all people affected by ME/CFS and Fibromyalgia through advancing awareness, care, treatment and research.
Miles W. Griffis @mileswgriffis
4K Followers 1K Following Co-founder/editor @thesicktimes Columnist @highcountrynews [email protected] #LongCovid 🇵🇸
Tess Falor, Ph.D. | @.. @tessfalor
9K Followers 5K Following 🚀Space physicist➡️#MECFS researcher🧪 Founder - Renegade Research @renegaderes - RemissionBiome @remissionbiome ✨Serendipity Meets Preparation✨
Monica Verduzco-Gutie.. @MVGutierrezMD
26K Followers 8K Following Professor & Chair of Rehabilitation Medicine @uthsa_rehabmed @UTHealthSA | #Physiatry #LongCOVID | mom, runner, #LatinasInMedicine | my ideas
Cort Johnson @CortJohnson
10K 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
Workwell Foundation @4Workwell
3K Followers 2K Following #Nonprofit #research laboratory providing #disability evaluations, #education, and #resources for #MECFS, #LongCOVID, and other #fatigue related illnesses.
Solve ME/CFS Initiati.. @PlzSolveCFS
12K Followers 4K Following Making ME/CFS, Long Covid & post-infection diseases widely understood, diagnosable, & treatable. #SolveME #MECFS #LongCovid Donate @ https://t.co/84TBR9Fgzj
Alexis M. @turnoftheshrew
3K Followers 660 Following Advocacy for Long Covid, ME/CFS, dysautonomia & related syndromes. Broader disability justice for everyone. Former HCP.
Jennie Spotila @jspotila
2K Followers 419 Following Writer/ME Activist. We are more than our disease.
Phoenix Rising @aboutmecfs
7K Followers 4K Following A community for people with Myalgic Encephalomyelitis & related conditions. Fibromyalgia, Long Covid, Dysautonomia, EDS & MCAS all welcome!
Bateman Horne Center @BatemanHorne
6K Followers 1K Following Bateman Horne Center is a non-profit medical, research, and education center devoted to eradicating ME/CFS, FM, Long COVID, and related conditions.
Maureen Hanson @DrMaureenHanson
6K Followers 145 Following I am a Professor in the Molecular Biology and Genetics Department at Cornell University in Ithaca, NY.
Danny Altmann @Daltmann10
26K Followers 2K Following Immunology Prof. Ed at OUP OxfordOpenImmunol, Imperial Coll research group with @BoytonRosemary. Co-author - https://t.co/TRqYKSl30V
Clare Daly @clarejdaly
6K Followers 1K Following Usually a #WomanInTech - Year 4 of #LongCovid (2020) | #MECFS (1993)
Aaron Teasdale @AaronTeasdale
3K Followers 866 Following Writer & photographer specializing in adventure, natural history, & conservation. Two-time Travel Writer of the Year.
Ravi Veriah Jacques @RaviHVJ
6K Followers 995 Following On a long twitter break | 2021 Schwarzman Scholar | @Stanfordhistory alum | Covid longhauler | Long Covid & ME/CFS Advocate 🇲🇾🌲✨🎻
Herbert Renz-Polster @RenzPolster
8K Followers 504 Following physician-researcher, paediatrician, ME/CFS since 2016. This account is about science, esp. CFS (may also visit: @kinderverstehen: on child development (German)
Marie-Claire Grounds @DrGrounds
5K Followers 2K Following Geriatrician. Interested in Parkinson's Disease, Acute Frailty, singing and travel. Living with #LongCovid.
Wilhelmina Jenkins @minadjenkins
2K Followers 1K Following
Leonard Jason @CenterRes
2K Followers 33 Following Leonard Jason is a Professor of Clinical and Community Psychology at DePaul University. He is also Director of the Center for Community Research
Thane Black @thane_black
7K Followers 187 Following 'Kindly let me help you or you will drown said the monkey putting the fish safely up a tree' #SevereME
Francisco Westermeier @fcowester
888 Followers 536 Following Biochemist/Physiologist interested in metabolic and cardiovascular abnormalities in ME/CFS. Deputy Editor in Cardiovascular Diabetology
Michelle Monje🎗️ @michelle_monje
18K Followers 1K Following Neuroscientist. Neuro-oncologist. Mom. @Stanford @HHMInews @CancerNeurosci
Robert Leaman @robert_leaman
507 Followers 839 Following Biomedical natural language processing / text mining. Staff scientist at NCBI/NLM/NIH; views my own. Creating a literature resource on Long Covid.
Gina Assaf @GinaAssaf
2K Followers 2K Following Design/Research/Strategy - Tech for Social & Global Impact. Founder & Managing Director @digital_obi. Co-running #longCovid @patientled research. MHCI @cmuhcii.
Alyssa @AlyssaaErinn
1K Followers 1K Following On disability, illness, & finding liberation. white settler. Long COVID, ME, POTS et al. she/her
Jose G Montoya @JosGilbertoMon1
2K Followers 1K Following “Dr. Jack S. Remington Lab for Specialty Diagnostics” Toxo Reference lab 🔬and Summit Therapeutics. Proud husband-Melba and Dad. [email protected]
Derya Unutmaz, MD @Derya_
13K Followers 5K Following Professor @jacksonlab Human immunologist #Immunotherapy #health #Cancer #MECFS #longevity #COVID19 #AI #syntheticbiology #CRISPR #Scifi #Technology #robots
Center for Solutions .. @CfSforMECFS
3K Followers 129 Following @NIH funded ME/CFS Collaborative Research Center, committed to understanding the pathogenesis of #MECFS
Michael A Osborne @maosbot
33K Followers 1K Following Dad, spouse, Professor of Machine Learning @UniofOxford, Co-Founder Mind Foundry, Director @aims_oxford. Bayes, Long Covid, porridge, AI must be good for humans
Litsa Dremousis 🐳 @LitsaDremousis
7K Followers 5K Following ALTITUDE SICKNESS (Future Tense Books). Upcoming: FIRE IN THE HOLE: A EULOGY FOR THE LIVING. Longtime freelance essayist for The Washington Post, et al. #pwME
M. and S. Shaw @twoShaws
2K Followers 3K Following Person w/ severe #MyalgicEncephalomyelitis #MyalgicE (ME/cfs) & her M.E. advocate spouse/caregiver. Before: Architect, software interaction designer.
Rivka @Rivkatweets
4K Followers 2K Following Activist/Organizer: ChronicIllness, disability, ME/CFS, Lyme, LongCovid, women | Writer: WashPost, MarieClaire, NPR, Ms, Newsweek | Playwright: Many productions
Harry Leeming @HarryLeeming
5K Followers 831 Following Founder of @visible_health | #MECFS #LongCovid | Building for invisible illness
Chimére L. Sweeney @chiluvs1
3K Followers 579 Following Black Woman #LongCovid Filmmaker. DONATE to my FILM! Disabled and Destined.
Joanna Bracey @gtcjo
1K Followers 1K Following Long Covid nonsense since March ‘20. Hopeful normal service will resume someday. Staunch 🏳️🌈🏳️⚧️ ally.
Sonya Chowdhury @SonyaChowdhury
3K Followers 520 Following Chief Executive, @actionforme and Board Director, @curo_group. All tweets and views expressed are personal & don'tt reflect the views of Action for M.E./Curo
Peter W 🇺🇦 @mediumwhite
624 Followers 746 Following Europhile 🏳️🌈, lived in 🇬🇧🇮🇹🇨🇼🇧🇪 🇧🇩. Dedicated follower of science. Former textile engineer, now a Mgmt consultant. I believe in believing people.
MEAction GA @meactionga
507 Followers 366 Following MEAction GA is an online statewide grassroots community for people living with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, their caregivers and allies.
Minnesota MECFS @MinnesotaMECFS
507 Followers 334 Following
Prof Nisreen Alwan �.. @Dr2NisreenAlwan
82K Followers 5K Following Public Health Professor MBE. My words=my PERSONAL views. RT≠endorse. Other SM: @[email protected], nisreen.a.alwan @Threads, https://t.co/yfWKMqZjXJAfter a long wait, our longitudinal long COVID study is finally published in @NatureComms: nature.com/articles/s4146…. We find a skeletal muscle alterations in patients with #longcovid, which worsen with exercise. 1/n
@BirbsAreReal @NatureComms That’s the follow up study:). In retrospect, I think all participants met these criteria, but I am not 100% sure
I am very excited to be attending the @NIH meeting on #MECFS, where I will be presenting the culmination of our past five years of work at @jacksonlab. We have been focused on understanding the immune disruptions in ME/CFS, and we have some amazing results to share!
Thank you @NINDSdirector and @NIH_NINDS for hosting such a great conference. Great presentations and fun to catch up with some of the best mentors like Dr. Lipkin @Columbia_CII @RedefiningMECFS @AvikRoy74969264 #MECFS
We are excited to share our new work @CellCellPress, led by Andie Wong, in collaboration with the groups of Ben Abramoff, Sara Cherry, and @ThaissLab, uncovering a multi-organ pathway with important implications for the pathogenesis of #LongCOVID. (1/10) cell.com/cell/fulltext/…
Hi Folks! Help me help you! We are doing a study that compares ME/CFS and Long COVID hoping to find targets for interventions. If you have Long COVID and live in south Florida consider signing up for our study! #LongCOVID; #ME/CFS; #Postviral nova.edu/nim/research-s…
“Where's warp speed for people who have long COVID? Because they're suffering, they have disabilities. They aren't able to get back to work or back to their lives.” - @MVGutierrezMD Thanks @TexasTribune for this story on #LongCOVID texastribune.org/2023/10/12/tex…
2023: "We didn't know anything about it." 2021:
News: NIH study identifies features of Long COVID neurological symptoms dlvr.it/SnbcT2
Video of presentation includes explanation of recently funded research.
Thank you to Dr. Avik Roy & Dr. Gunnar Gottschalk from Simmaron Research for your presentation on today’s NIH ME/CFS Advocacy Call. We look forward to following your progress. youtu.be/ONUgBYO9S2A Follow 👉 @ggottschalkPhD @RedefiningMECFS #MECFS
@dysclinic History does not support this. Exercise trials have been run with unbelievable bias in interpreting results.
@dysclinic I covered the exercise trials for Nature. One of the major concerns, that I never got a clear answer for, was what their plan was for screening out patients with post-exertional malaise, or for monitoring for the possibility of adverse events during the trial.
@dysclinic Even if its not harmful for some per se, it doesn't get to the core issue. They need to spent precious & finite funding on understanding the disease pathophysiology & treating it. This exercise study inevitably takes money from other lines of inquiry that'd be far more useful.
@dysclinic This conclusion relies on the assumption that the protocol & analysis will accurately capture any harm done. Given the history of trials of exercise in ME, this is not something we can rely on. I recommend reading @MEActNet’s letter & summary of evidence meaction.net/2023/03/22/nih…
@mecfsquotes @DrMaureenHanson Awesome dude!! We need treatment, we need a cure!!!
@mecfsquotes @DrMaureenHanson pwME should be extra careful with their neck because the risk of Cranio-Cervical Instability, CCI. Just sayin. 😘
REWIND
DJs really be putting anything before the drop… #MECFS 🧵
Thats right!😅
DJs really be putting anything before the drop… #MECFS 🧵
Today, for The Nation, @fi_lowenstein and I have published a feature story about the "Long Covid Revolution," how post-viral illness is tearing at the fabric of American life, and forcing a reckoning for the future of disability policy. thenation.com/article/societ…
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