Sabrina Poirier (On Hiatus) @Sabrina_Poirier
Community Builder / Passionate Collaborator / Chair - #MedicalEducation Group / #ResearchPartner / #MECFS #LongCovid Advocate / #PwME / #MCAS / #POTS / #Fibro linktr.ee/sabrinapoirier… Halifax, Nova Scotia Joined December 2011-
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I'll also point out there's a lot of daylight between No PEM and Mild (50% impairment). This is a challenging population requiring special monitoring and education, because they feel lousy but are good enough at faking being well that we clinicians may assume there's no problem.
I'll also point out there's a lot of daylight between No PEM and Mild (50% impairment). This is a challenging population requiring special monitoring and education, because they feel lousy but are good enough at faking being well that we clinicians may assume there's no problem.
This clearly needs sharing again.
This clearly needs sharing again.
In the past year I’ve been a part of a few conversations in healthcare spaces about ableism. These conversations need to be had so. much. more.
I hate the idea of trying treatments bc I’m desperate. I’ve tried so many. Few have helped significantly or for long and I’ve lost so much health in the pursuit. But then, I’m desperate. I got projects in the wings. How’s a sick person supposed to resist a siren song like health?
You know what needs a big overhaul? Health conferences. They've regressed big-time since 2020. Back to being elite events, flying in big-name speakers giving canned talks, in-person only, little patient representation. /1
We are excited to show you the first video of our campaign. This video will air on Austrian television over the next few weeks. Please help us raise awareness by sharing this tweet. More info: weandmecfs.org/awareness Donations help us liberate those affected. 🙏 #MECFS 💙
This is so very important! We feel it’s a disaster to have proposals in Congress that focus only on long Covid and don’t include prominently MECFS. The funding mandate needs to be for both!
This is so very important! We feel it’s a disaster to have proposals in Congress that focus only on long Covid and don’t include prominently MECFS. The funding mandate needs to be for both!
like i really want exercise to work for everything too guys but as it turns out that isn't the deal
(Also helping people pace IS the rehab. You don’t need to add something else to it just to make you feel better)
DON'T. LOOK. AWAY. #SaveCarlasLife #MEAwarenessHour Please meet Pierre, Carla's father. We cannot overstate how distraught he is by what is happening to his daughter. However, he wanted to speak to everyone directly. Please watch & share widely. She is running out of time 💚
I really don't understand what's going on here. The whole thing with ME is, supposedly, that nothing shows up in tests. But when someone's SpO2 falls to 72 (normal 95-100), this is due to - what - illness beliefs?
I really don't understand what's going on here. The whole thing with ME is, supposedly, that nothing shows up in tests. But when someone's SpO2 falls to 72 (normal 95-100), this is due to - what - illness beliefs?
Dear @5_News, following your previous report on Carla's battle with M.E, could you please investigate why detailed, evident ill health is being ignored & monitoring has now been removed. 72% SPo2 & 139 HR. #SaveCarlasLife
Dear @5_News, following your previous report on Carla's battle with M.E, could you please investigate why detailed, evident ill health is being ignored & monitoring has now been removed. 72% SPo2 & 139 HR. #SaveCarlasLife https://t.co/OCDJreMCKP
@MEawareness @5_News Jesus. That’s someone clearly struggling to breath with a clinical quality hospital device showing an emergency level low blood oxygen. The hospital, instead of addressing this…just turned off the obs machine 😧 I just…what is wrong with them??
Would like to see this conceptual shift more broadly - PEM is not a symptom, but a physiological state where a *lot* is going wrong; many symptoms can be part of that PEM state. #longcovid
Would like to see this conceptual shift more broadly - PEM is not a symptom, but a physiological state where a *lot* is going wrong; many symptoms can be part of that PEM state. #longcovid
@Sabrina_Poirier It's unacceptable! The basic of accessibility and disability justice. The basic!!
@SimonDecary @Sabrina_Poirier @LongCOVIDWebCA Are the 'pwLE' on your committee raising these access issues? Are they being HEARD by the abled decision-makers? Because the optics of this are terrible, and all the more insulting to PwLC & PwME for coming in the same week as the federal disability payment announcement.
@Sabrina_Poirier Charging anyone after receiving 20 M$ - especially disabled patients living in gov't mandated poverty - is inappropriate. And certainly doesn't meet "equity, diversity, inclusion" expectations. Sadly, this conference is now inaccessible to those who need it most.
When Beth Mazur was visiting me just before she died, I said that I felt like being so sick for so long was like being pre-dead — having already died and yet still being alive. And I talked about how that experience struck me as interesting: What is life when you're already dead?
Just a public service announcement that if you ever feel the need to tweet something like this, a strong alternative would be to just log off for a while.
Imagine being a group that received $20M to build a Long COVID network in Canada, and then charging patients to attend their annual conference. It’s giving audacious.
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
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]
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...
S Blitshteyn MD, FAAN.. @dysclinic
20K Followers 1K Following Neurologist, Director of #Dysautonomia Clinic, Clinical Associate Professor @Jacobs_Med_UB. Trained @MayoClinic #LongCovid #POTS #EDS, tweets🚫med advice
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
Naomi Harvey PhD #Wea.. @Naomi_D_Harvey
15K Followers 4K Following Zoologist. She/her. 22yrs with ME/CFS. Pro-vax but vaccine injured. Life on pause (views my own - unemployed) ♿️ https://t.co/YeMrEWwEg5
Billy Hanlon @bhanlon15
12K Followers 11K Following Director of Advocacy & Outreach, Minnesota ME/CFS Alliance | Long COVID Ally
Anil van der Zee © @AnilvanderZee
9K Followers 823 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.
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
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]
Lizzy H @hopefullizzy
6K Followers 3K Following 29y/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✨
Natalia @NataliaHodgins
7K Followers 1K Following Disabled writer with words in @Refinery29AU, @ABCNews, @PublicHerald | Activist | Feminist | MECFS | Follow on IG - same handle
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.
Tess Falor, Ph.D. | @.. @tessfalor
9K Followers 5K Following 🚀Space physicist➡️#MECFS researcher🧪 Founder - Renegade Research @renegaderes - RemissionBiome @remissionbiome ✨Serendipity Meets Preparation✨
Todd Davenport @sunsopeningband
11K Followers 5K Following Non nobis solum nati sumus. Husband. Dad x3. Upstreamist. Pracademic. Storyteller involving data. “That brand of person.” Full prof. DPT PhD MPH OCS.
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
Maddox @Zelti_moon
122 Followers 702 Following WEAR A MASK 😷| #LongCovid Since 2022 | #ME #POTS #MC #ABDL #Hirschsprungs | Autistic, Anxiety Ridden, Somehow Managing🌻 | they/them 🏳️🌈
Alexandra Alvida @Aelvidra
36 Followers 146 Following very severe ME CCI EDS mcas, insta: @alekpalek Gofundme: https://t.co/op7gGeiInu ⚠️please help if you can⚠️
Heather @hataanji41604
2 Followers 192 Following
Hannah Sharland @h_sharland
518 Followers 2K Following Staff writer for the Canary. Covering climate and ecological crisis. Climate activist. Here to learn about climate justice. She/her. #ME #CFS
AirSpot Health @airspothealth
656 Followers 2K Following Our smallest fresh air monitor! Combines with the AirSpot App to help optimise your AirHealth.
𝕳𝖆𝖓𝖓𝖆�.. @spoonfulofhan
3K Followers 821 Following Long COVID • POTS • Hashis • Epilepsy • ME/CFS • Mental Health Awareness • Name is the same on all platforms. Please read my GFM below
JoellenSchuh @JoellenSch55035
2 Followers 689 Following
Joan Crawford @joan_crawford1
277 Followers 1K Following
Viviane Côté Martin @VivianeCMartin
241 Followers 2K Following elle/iel, she/they @[email protected]
Rhi @RhiaRhiaRhi
1K Followers 724 Following Any pronouns. Bsc, PgDip Molecular Biology. Neuroscience Nerd & Science Communicator. Eternally trapped at VUW.
Janiesaysyay @janiesaysyay
9K Followers 8K Following Corporate research My conspiracy theory: It Came From a Lab Advance search #snakes or #pandemicplaylist and @Janiesaysyay
Katie Bircher 😷 @lyraelle
874 Followers 5K Following Associate agent at Sara Crowe Literary, children’s/YA editor, eternal emo kid, dancer, #hEDS & #MCAS spoonie, ND. She/her. 🩷💜💙
Katie Davies @KatieDa10383922
4 Followers 20 Following
Natalia @llnatall
38 Followers 415 Following
sean stidston @seanstidston
236 Followers 972 Following
Sinéad @spoonless_me
2K Followers 828 Following dog lover • plant mad • software engineer • chronically ill #CanWeTalkAboutIt #PostVacSyndrome #MECFS #LongCovid #SFN #POTS #Fibromyalgia
Rachel 44 @RachReynolds510
90 Followers 808 Following ME/CFS/Long Covid campaigner |Coeliac awareness| Get Tories Out
I🖤 @inadarkroom247
905 Followers 311 Following 25, UK and Dying from covid induced very severe ME. POTS + mild MCAS. FUNCAP 1.2
Renate-new account�.. @Renate834601
78 Followers 402 Following Myalgic Encephalomyelitis since -87,severeME,Bedbound, diagnosecriteria /name matters!separate ME from ME/cfs; use ICC -G93.3 for ME❤️#Enterovirus
Laura Boné @2laurabone
286 Followers 886 Following Electric Vehicle Industry /Fighting ME/CFS & Long Covid
Laura vs ME ♿ 🏳�.. @LauraCayuela7
395 Followers 310 Following Paciente de #EncefalomielitisMialgica muy severa. Luchando desde mi cama por nuestros derechos 🛌🏻📢 Investigación, formación y reconocimiento
Nicola Jeffery @NicolaCJeffery
5K Followers 5K Following 'Behind that loud-mouthed journalist @MrTopple is an even louder-mouthed woman!' Mum, Activist, #ChronicIllness warrior! #BLM! Standing up to #Classism!
Liam The Wonder Pug S.. @LiamWonderPug
6K Followers 6K Following Hyperactive cystinuria pug, born 5/13? 14?-overnight litter. Pug Jack'son is 9 months older, Siamese cat Sam harasses me. I resist!
Wilderness Wanderer �.. @plank_eye
99 Followers 567 Following Bitcoin and crypto enthusiast. Political centrist. Christian trying to see and do things differently. N95 Masks do help reduce spread of illnesses. he/him
Chronically Illumise .. @ChronIllumise
21 Followers 238 Following Lily. #pwME, pwPOTS, Pokémon fan (she/her).
Ryan Extraterrestrial.. @RyanE_T_
259 Followers 1K Following B.A. Psychology Environmental conservation. Anti #celebritygossip Less material, more thought #millionsmissing Living with #disability, #ableism must end #BIPOC
Rete Long Covid Press @ReteLongCovid
120 Followers 998 Following Benvenuti nella Rete Long Covid Italia 💙 https://t.co/T6NThQfoQL
M @maryhum82842507
81 Followers 1K Following
EPIPOLE of Phoenix @EpipoleofPHX
1K Followers 3K Following WRITER, DISABLED, PRO-CHOICE, PRO-WOMAN, FEMINIST, ANTI-EPIDURAL,ANTI-ESI,NOZEMPIC(CSF leak, HT, migraines,EBV, spinal lipoma & BPD)LET’S GET WOMEN TALKING!
Birgit Gustke @BeeGee26168032
2K Followers 812 Following Aktiv für mehr #MECFS #Information, Forschung, Fortbildung, Menschen mit ME/CFS #LongCovid #PostVAC #MCAS #POTS #FatigatioeV Hessen bgustke@[email protected]
Baby It's Gold Outsid.. @sodagrrl
14K Followers 13K Following I believe in our inspired Constitution. Mayflower Winslows, greatx5 Grandpa was Thomas Jefferson's childhood tutor. Pronouns: deez/dem/dere DMs=Blocked
Malgorzata (Gosia) Ga.. @GosiaGasperoPhD
22K Followers 4K Following Developmental biologist, researcher. Makes COVID predictions that (so far) come true. Wants Canada to eliminate SARS2, #CleanTheAir & prevent #LongCOVID
Rush Wayne @Neuroshft
565 Followers 1K Following Inventor, amateur pianist. Solutions Focus, 3Ps, mindset, Langer mindfulness. Covid conscious. Pro peace, anti-nuclear, end militarism. Harvard/Berkeley grad.
Terry Kurdian @singularity7771
71 Followers 275 Following
Alison Nolan @AlisonNolan9
2K Followers 2K Following Has a few biology degrees, did a virology PhD. Zero covid zealot™ Hard-line scientist© Covid avoider. #MECFS
Abolition @forAbolition
0 Followers 2K Following
TrendyTragedy @TragedyTre11058
31 Followers 2K Following
🐸 Froglet @froglet80
2K Followers 1K Following #LongCovid #ImmuneDeficiency #Homeless 4+ yrs w/o real treatment or gov't aid & #Crowdfunding 2 live, 📌 for #MutualAid boosting, #PwLC #FBLC
WorkingAndNotWorkingW.. @WorkingWithLC
310 Followers 497 Following All about #LongCovid paid work/not being in paid work #Benefits including energy limiting conditions: Dr Clare Rayner, Dr Jenny Ceolta-Smith and Pen Scribbler
michèle delaunay @elzevir33
14 Followers 383 Following
Vanessa Smith @normal_ness
2K Followers 2K Following We’re all normal to ourselves. I write. Hates hustle,loves shiny objects. Can’t even influence an ant. Anthropology & sociology graduate Author of books.Spoonie
Alex @merfitveg
243 Followers 1K Following Living with debilitating chronic illness (Ehlers-Danlos, Dysautonomia, etc.). Working to alleviate pain and suffering where possible.
#FreeAssange @fascismcantwin
277 Followers 1K Following My body is materially disabled. MECFS, EDS, & more.
Isabel Ramirez-Burnet.. @IsabelRamirezRD
3K Followers 1K Following NBC-HWC CEO @renegaderes & Todologa @remissionbiome patient-led, decentralized, human-centered research. #MECFS #longcovid #postinfectious #chronicillness
Claus Ernst 🌻→ @.. @ClausErnst
2K Followers 1K Following Animated explainer videos, Moderate ME from initial 'mild' SARS-CoV-2 infection 2021. 39 months + counting. Mastodon → https://t.co/aA7or0WZ8r
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
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]
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...
S Blitshteyn MD, FAAN.. @dysclinic
20K Followers 1K Following Neurologist, Director of #Dysautonomia Clinic, Clinical Associate Professor @Jacobs_Med_UB. Trained @MayoClinic #LongCovid #POTS #EDS, tweets🚫med advice
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
Tom Kindlon @TomKindlon
14K Followers 577 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
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
Jonas R. Kunst (@kuns.. @KunstJonas
17K Followers 723 Following Professor of Psychology @UniOslo. Past @Yale @Harvard @UiB. Founder @Advances1n. Father. Views are my own. @kunstjonas.bsky.social @[email protected]
Putrino Lab @PutrinoLab
34K Followers 382 Following We make people (and technology) better at Mount Sinai. Opinions are my own.
Naomi Harvey PhD #Wea.. @Naomi_D_Harvey
15K Followers 4K Following Zoologist. She/her. 22yrs with ME/CFS. Pro-vax but vaccine injured. Life on pause (views my own - unemployed) ♿️ https://t.co/YeMrEWwEg5
Billy Hanlon @bhanlon15
12K Followers 11K Following Director of Advocacy & Outreach, Minnesota ME/CFS Alliance | Long COVID Ally
Resia Pretorius @resiapretorius
27K Followers 218 Following Distinguished Prof: Physiological Sciences, Stellenbosch Univ, South Africa; Honorary prof: Univ of Liverpool Research: coagulation, inflammation
Anil van der Zee © @AnilvanderZee
9K Followers 823 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.
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
Sten Helmfrid 🇺�.. @StenHelmfrid
7K Followers 205 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.
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]
Dr Jay Watts @Shrink_at_Large
37K Followers 9K Following Consultant clinical psychologist/ activist/ neuroqueer bluestocking. Former Lived Experience Worker. Future failed poet. Will question ideology for cake ❤️ 🥄🎭
Marco Wetzel (is figh.. @Gmwetz
2K Followers 831 Following Founder of @U2Fight_world // #UniteToFight2024 // #LongCovid and #MECFS advocate // #longcovid patient
Sonja Kohl @eskabadu
2K Followers 1K Following 🇩🇪 One of #millionsmissing | Team #GOfundMECFS & #SIGNforMECFS | Suffering from #MECFS after a viral infection in 2012 | https://t.co/FSdIVPb7iI
Essentials by Nature @essentialnature
495 Followers 357 Following Wholistic minded retired health professional interested in all things organic
Amy Cook @AmyCookOC
1K Followers 2K Following run, bike, kayak, dive, travel, eat, drink, sleep and repeat.
Allison Cunny @allisoncunny
1K Followers 5K Following
Linz @AwkwardLinz
932 Followers 3K Following scientist, artist, stack of illnesses in a trenchcoat; bisexual, disabled, neurofunky; hEDS, migraine, ME, long Covid; no energy for anyone's bullshit; she/they
💙 @TheSpiritualAr2
2K Followers 5K Following They/Them 🌈 Icon by Steen on Picrew! Invisible Disabilities Quaker Attender, friend to all faiths.
Alison Nolan @AlisonNolan9
2K Followers 2K Following Has a few biology degrees, did a virology PhD. Zero covid zealot™ Hard-line scientist© Covid avoider. #MECFS
Gregg Mallitt 🇭�.. @fungus_54
529 Followers 2K Following Retired Emergency Service Officer with Integral Energy. Retired Deputy Rescue Officer NSW State Emergency Service Sydney Western Division.
Sarah Mac @grannyash510
926 Followers 3K Following M.E for 19 years. Views of fairness and equality for all. Here to learn and to be kind (usually 🙃). NHS supporter. Pro Science and knowledge.
Rhi @RhiaRhiaRhi
1K Followers 724 Following Any pronouns. Bsc, PgDip Molecular Biology. Neuroscience Nerd & Science Communicator. Eternally trapped at VUW.
Suzanne T @Suzanne__T
640 Followers 893 Following Former postdoc in human centered AI; career break due to #LongCovid since May '22; tweets with brainfog so excuse the spelling
HopeStarMasacre @MscreStarHope
2K Followers 3K Following its alright… im just dying is all…// writer and performer of the theatric kind // disabled as fuck with #LC #ME #POTS #MCAS & more // antizionist ✡️ 🇲🇽🏳️⚧️
Michael J. Prince @princepolity
3K Followers 989 Following Lansdowne Professor of Social Policy @uvic, political scientist, disability advocate, media pundit, award winning author, happy husband, proud dad & doting baba
Sinéad @spoonless_me
2K Followers 828 Following dog lover • plant mad • software engineer • chronically ill #CanWeTalkAboutIt #PostVacSyndrome #MECFS #LongCovid #SFN #POTS #Fibromyalgia
Nael (any prns) canad.. @greensnail_
3K Followers 2K Following #LastStand @LastStand200 Signal 587-416-0111
Mike Ashkewe (Heart o.. @BirdmanDodd
4K Followers 3K Following #Indigenous #PWD Writer for Star Trek adventures host @thisweekingeek email [email protected] / mikeashkewe [email protected] All socials @BirdmanDodd
DisabilityAllianceBC @DisabAllianceBC
5K Followers 3K Following Helps British Columbians with disabilities access supports through front-line and systemic advocacy, community projects, workshops & publications.
Dr. Theresa Chapple @Theresa_Chapple
43K Followers 4K Following Public health geek, maternal and child health advocate, social justice seeker, mother of three. Motto- "In God we trust, everyone else must show data"
𝕳𝖆𝖓𝖓𝖆�.. @spoonfulofhan
3K Followers 821 Following Long COVID • POTS • Hashis • Epilepsy • ME/CFS • Mental Health Awareness • Name is the same on all platforms. Please read my GFM below
biomesight @biomesight
794 Followers 104 Following BIOMESIGHT is an AI-driven wellness analytics platform with a primary focus on the gut microbiome as a leading indicator of wellness.
Dr. Jackie Whittaker @jwhittak_physio
7K Followers 4K Following Associate Prof @HlthResearchBC Scholar, PT & Eternal Optimist improving health by preventing sports injuries & osteoarthritis @UBC @Arthritis_ARC 🏳️🌈 She/her
Hannah Sharland @h_sharland
518 Followers 2K Following Staff writer for the Canary. Covering climate and ecological crisis. Climate activist. Here to learn about climate justice. She/her. #ME #CFS
Kags ❇ 😷 #LongVZ.. @Klang764
1K Followers 2K Following ME (not cfs) for 24 years,severe for the last 4. Socialist, despise Tories with every fibre of my being.
N🤗VA ME-CFS/POTS/L.. @CFSnova
543 Followers 1K Following For pw/caring4 long haulers: ME/CFS/FMS; Orthostatic Intolerance, POTS; Long Covid; Chronic Lyme. VDR immunopathy. MTHFR+. MCAS. By @NovaSupport Elly Brosius.
Maintenance Phase @MaintenancePod
99K Followers 152 Following Debunking the junk science behind health fads, wellness scams and nonsensical nutrition advice. Co-hosted by @yrfatfriend and @rottenindenmark.
Oonagh Cousins @oonagh_cousins
1K Followers 559 Following Visiting Research Fellow at Oxford University. Studying Long Covid. Ambassador for charity @long_covid BBC piece:
Martin Kräter @KraterMartin
2K Followers 330 Following Postdoc @GuckLab @MPI_Light studying cell mechanics in #microcirculation
fhronesis @fhronesis
339 Followers 2K Following #MECFS #EM😶🌫️ Sujet manquant EM = Encéphalomyélite Myalgique PEM/MPE= Malaise Post-effort
Prof(Dr.) Sunil Raina @SunilRaina15
913 Followers 140 Following Public Health, Research, Tribal Health, Covid, climate change, Economics, Kashmir, Migration, World Health Network
zedsrigil @sunsweptforest
427 Followers 849 Following forest.haven they/them autistic me/cfs and more nature music outer space
Jam Williams-Thomas @JamAntonioTV
3K Followers 2K Following 📺Multiskilled TV Reporter/Camera- ITV News. 🎬Screenwriter. 🇯🇲Part yardman. ☘️ Part paddy. 🐝Full manc. ⚽️ MCFC. 🎙️You Good, Bro? Podcast coming soon
Andy Bonner @AndyBonnerITV
12K Followers 9K Following
#MillionsMissing Deut.. @MMissingGermany
2K Followers 786 Following #MillionsMissing – Eine politische Initiative | Myalgische Enzephalomyelitis (ME)/Chronisches Fatigue-Syndrom (CFS) oder #MECFS
Hazel Newlevant @HNewlevant
6K Followers 3K Following Cartoonist working on QUEER & HOW WE GOT HERE. Previously: CHAINMAIL BIKINI, NO IVY LEAGUE, @comicsforchoice. Tweets for @awaveblueworld, opinions my own. ⚧
André Saravia @ssaraviaandre
1K Followers 492 Following #LongCovid Co-Research | President @longcovidchile | ICU Nurse Technician | @Patientled Partnership #LongCovid | Traduction EN-ES 🇨🇱
The Brain Docs @the_brain_docs
3K Followers 2K Following Neurologists/scientists dedicated to empowering others achieve their optimal brain health
Touché Turtle @ToucheTurtlez
138 Followers 182 Following
M_P @MchP66592467
3K Followers 2K Following 35y/o w Post-Acute SARS Cov2 Syndrome/ME/CFS,POTS,MCAS.Fmr Fin Analyst-now unable 2 work. ME/CFS=biggest Med scandal in history.Experiments w novel therapeutics
Amar Sharif @AmarSharif11
485 Followers 477 Following Consultant Physician Gastroenterologist and Hepatologist MBBS, MRCP, MD, FRCP.
frieke @frieke72
846 Followers 344 Following transferring... reconnect? See you @frieke72 @mastodon Hier nog voor overheids-info, actualiteiten en longcovid (Funcap moderate-mild, mostly housebound)
ImYoo @imyoohealth
344 Followers 277 Following ImYoo is debugging the human immune system. By coupling at-home blood collection and single-cell RNA sequencing, we enable high resolution insights across time.
Pantéa Javidan, JD, .. @pjavidan
5K Followers 5K Following Faculty & Research Fellow @StanfordHumRts Center for Human Rights & International Justice; @Stanford Human Rights in Trauma Mental Health Lab. Views mine.
Joseph @josephwithfibro
120 Followers 658 Following Software Engineer | Undergraduate Student | #Fibromyalgia #Dysautonomia | @wecrunchme
UniteToFight2024 @U2Fight_World
3K Followers 117 Following 100% crowdfunded LC & ME/CFS conference project. community-driven. independent. global.I'll also point out there's a lot of daylight between No PEM and Mild (50% impairment). This is a challenging population requiring special monitoring and education, because they feel lousy but are good enough at faking being well that we clinicians may assume there's no problem.
These guidelines are from the International Consensus Criteria for ME. 50% reduction in pre-illness activity levels is required for mild. Moderate is housebound. These levels don't belong together in patient stratification for clinical decision-making. ncbi.nlm.nih.gov/pmc/articles/P…
There have been many times that I’ve been vulnerable sharing some difficult lived experiences, to ultimately help other people, and some clinicians have responded that I’m “playing the victim”. They try to use my vulnerability against me. How do they view their patients?
In the past year I’ve been a part of a few conversations in healthcare spaces about ableism. These conversations need to be had so. much. more.
I hate the idea of trying treatments bc I’m desperate. I’ve tried so many. Few have helped significantly or for long and I’ve lost so much health in the pursuit. But then, I’m desperate. I got projects in the wings. How’s a sick person supposed to resist a siren song like health?
You know what needs a big overhaul? Health conferences. They've regressed big-time since 2020. Back to being elite events, flying in big-name speakers giving canned talks, in-person only, little patient representation. /1
Any ideas how to access the pure form of international meds? (Just the active ingredient). Ibudilast is an OTC med from Japan and it’s promising for #LongCovid It helps Dianna, but she reacts strongly to the excipients (all the inactive ingredients) in the commercially…
We are excited to show you the first video of our campaign. This video will air on Austrian television over the next few weeks. Please help us raise awareness by sharing this tweet. More info: weandmecfs.org/awareness Donations help us liberate those affected. 🙏 #MECFS 💙
As a consultant clinical psychologist, I stand against the psychologisation of #ME and with those fighting for justice and service provision. #ME patients face similar testimonial deflation as those given the BPD label, which costs and ruins lives. Solidarity X #SaveCarlasLife.
DON'T. LOOK. AWAY. #SaveCarlasLife #MEAwarenessHour Please meet Pierre, Carla's father. We cannot overstate how distraught he is by what is happening to his daughter. However, he wanted to speak to everyone directly. Please watch & share widely. She is running out of time 💚
@TheCanaryUK @TheChronicColab @h_sharland @MEAssociation @actionforme Does this person have a good understanding of what PEM is? I know cancer treatment causes fatigue which can take a few days to ease off but it isn't PEM.
@TheCanaryUK @h_sharland @MEAssociation @actionforme It's so incredibly wrong that an 'ME/CFS professional' doesn't know what PEM is.
Authorities, including medical experts, were told explicitly that it could happen, that they should research it and be very cautious and rigorous. They were not concerned. At all. It was all dismissed. There is no amount of imagining an alternative history that will change this.
All the same things that happened to millions of us with ME/CFS are happening to those with LC. All the research so far has shown very little that wasn't known for decades. And it won't change as long as this shameful failure is covered up.
#LongCovid is not anything new. Chronic illness after infectious diseases has been known for centuries, but it was denied and psychologized. There is no need to imagine that it could have been predicted. It was. Just look at @RFH1955, it has a huge archive of precedent for it.
I know you're only quoting some professor, who somehow missed this entirely. But as a journalist you can do better. Just because experts are failing doesn't free you from parroting words that are at best inept, at worst lies covering up major systemic failure.
You can easily find examples of this, as early as Spring of 2020. All over twitter, in articles and in academics who submitted research proposals that were all turned down. This wasn't just a predictable problem, it was widely predicted. You are helping cover this up.
Hi @NicolaKSDavis, in this article, you quote “If five years ago, we were to imagine that a completely new disease, which for some can cause medium- to long-term, and potentially disabling symptoms in approximately 3% of the population [...] we would be enormously concerned.”
About 2m people have long Covid in England and Scotland, figures show theguardian.com/society/2024/a…
You don't need to imagine this. Thousands of people predicted exactly this. Millions of us were already living with post-infectious chronic illness before. It's long-been a controversial topic in the UK, in the form of ME/CFS, and how it's systematically denied.
@oslersweb @oslersweb, there’s another option, and the timing might be good. On May 15 and 16, the world’s largest conference on #LongCovid and #MECFS, titled #UniteToFight2024, is happening. It was initiated by those affected and will feature over 40 speakers, including Akiko Iwasaki, Ron…
@oslersweb It was so good, I listened to it 4 times in a row and posted it to my FB. It is so hard to find correct messaging, but you two nailed it.
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