AZ long haul @az_longhaul
Suffering ME/long Covid-like side effects from AstraZeneca jab. Despairing at lack of research into #MECFS, #LongCovid, and #PostVacSyndrome United Kingdom Joined June 2021-
Tweets848
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It’s the greatest medical scandal of the 21st Century. Intransigent doctors and gullible journalists have made the lives of ME/CFS patients a living hell. A massive and shocking story in this week’s column. theguardian.com/commentisfree/…
I spoke recently @MBVanElzakker, a neuroscientist at Massachusetts General Hospital, about the new NIH study on "deep phenotyping" of ME/CFS patients.virology.ws/2024/02/28/tri…
You know what, #medtwitter? Fair warning: I’m coming into the week pretty pissed off. I spent the MLK day weekend catching up on reading and thinking about the experiences of people with #LongCovid, chronic #lyme, #MECFS and other PAIS. I finally read Brian Vastag’s touching 1/
You have less than 1 week left to sign up and complete your questionnaire if you haven’t already done so! Don’t miss out on contributing your #DNA to the world’s largest ever study of #MECFS. shorturl.at/hilM3 #DecodeME
Attending #MECFS2023 today. It's totally unreal and amazing how intricately some of these researchers understand what's happening at a molecular level! #LongCovid
Attending #MECFS2023 today. It's totally unreal and amazing how intricately some of these researchers understand what's happening at a molecular level! #LongCovid
On Severe ME Understanding and Remembrance Day my thoughts are with all those suffering silently, chained to their beds, hiding in the shadows, waiting in vain for a better day that never arrives. #SevereMEDay #EndMEMalnutrition #MyalgicEncephalomyelitis
Just sharing @edyong209's excellent article on post-exertional malaise (PEM), a hallmark feature of ME and ubiquitous among #longCOVID patients. MD's, we can also experience fatigue but these are completely different things. My take? PEM is a neurological symptom...
Just sharing @edyong209's excellent article on post-exertional malaise (PEM), a hallmark feature of ME and ubiquitous among #longCOVID patients. MD's, we can also experience fatigue but these are completely different things. My take? PEM is a neurological symptom...
Struggling with… The RELENTLESSNESS of #MyalgicEncephalomyelitis. The lack of options/access to clinical care. Society’s lack of empathy, community care, curiosity or scientific literacy. The apathy towards all of us. The ongoing abuse of our energy. The grief. #NEISvoid
Another interesting article from @CortJohnson. "Whatever switch gets turned on in the body to allow humans to tolerate and benefit from exercise – it’s not happening on multiple levels in ME/CFS." healthrising.org/blog/2023/06/1…
“Shockingly, our research has revealed #LongCovid can leave people with worse fatigue & quality of life than some cancers” “Their health-related quality of life scores were lower than people with advanced metastatic cancers, such as stage 4 lung cancer” theguardian.com/society/2023/j…
Support the ME Association's #CountMEin campaign - please keep sharing, thank you! Yesterday, we launched a major campaign to reach people living in the UK, Channel Islands, or Isle of Man, who think they might be affected by symptoms – or who have a diagnosis – of #MECFS or…
[TW: story about severe ME/CFS] Some time ago, a person with severe #MECFS requested that I visit with them. It has been a while since I was there and I’m still working through everything I heard and saw that day. This person had been unwell for many years and their (1/)
When the @NIH was given $1.15B with instructions to research #LongCovid, it came with no strings attached and they said that no oversight was needed. This is what happens when there is no oversight. Everything about us in secret behind closed doors. statnews.com/2023/05/11/esh…
It would be difficult to design a condition that causes as much suffering as #MECFS while demanding any less attention from policymakers & the general public. I describe why in this open letter to friends & family that touches on my 6 year journey: medium.com/@winstoncb/a-l… #pwME
The NIH has had $1 billion and more than two years to study long Covid. They haven’t enrolled a single patient in a clinical trial, and treatment studies have been repeatedly delayed. @betsyladyzhets of @MuckRock and I spent months investigating statnews.com/2023/04/20/lon…
@ApacheCarolina Another “RECOVER initiative” study. They are demonstrating a clear pattern of simply not getting it. nature.com/articles/d4158…
Story on #vaccineinjuries from German TV featuring @Karl_Lauterbach German minister for health. Watch from 3:54 onwards. (BioNTech=Pfizer) youtu.be/653x0SpYd48
Alex Mitchell @ake2306
34K Followers 17K Following VITT (VACCINE INDUCED THROMBOTIC THROMBOCYTOPENIA). There are 445 VITT's and tragically 81 fatal cases. https://t.co/6TIq6Fe5l9
Adam Rowland MSc @oneadds
26K Followers 3K Following Physio/S & C Trainer- 16yrs Pro sport; Ballet ,Rugby, Military, PGA tour, severely injured due to AZ 💉 vaccine
Harriet Carroll: Long.. @angryhacademic
8K Followers 4K Following #LongCovid Scientific Consultant Hon Research Fellow, Lund Uni PhD Nutrition & Metabolism Tweets: nutrition▪health▪all-things-science▪activism▪#TeamClots
jules serkin @julesserkin
20K Followers 10K Following #Radio presenter @scoffquaff Xmas special show #BBC #PR #health #hospitality Listen: https://t.co/3DXO3weePd
React19 @React19org
39K Followers 167 Following React19 is a science-based nonprofit offering financial, physical, and emotional support for those suffering from long-term COVID-19 vaccine adverse events.
UKCVFamily @ukcvfamily
8K Followers 930 Following UK Charity for the Covid-19 Vaccine injured and bereaved Registered Charity No: 1207178 Core Participants in the UK Covid-19 Public Inquiry
💜Anne W. 💜💜 @AnnieWBelle
6K Followers 2K Following 💜Heartbroken mum wanting justice for my wonderful son who was killed by the AZ covid vaccine and died aged 32. Seeking justice for all vaccine harmed💔🙏💜
Dr David Cartland @CartlandDavid
219K Followers 10K Following BMedSci Published scientist MBChB MRCGP promoter of safe evidence based medicine, good medical ethics. Father ✝️🦁❤️Pronouns: told/you/so!! https://t.co/C4uZAiVvsb
Christopher J William.. @Christo19725794
5K Followers 3K Following v, injured, raising awareness for the injured,
SBtheNP, FNP-BC @ResearcherNP
4K Followers 437 Following Nurse Practitioner and Researcher. Former career in International Relations, Political Science, and International Development.
Kath Lanc @lanc5la55
2K Followers 3K Following Freedom loving Lancashire lass, vaccine injured by AZ 4120Z003 in March 21. Against discrimination, for free speech.
Christina @Christina_Wood1
2K Followers 1K Following Mum 💜 Earth Scientist - Glaciology, Quaternary Geomorphology. Mostly here for the netball chat 😆 #NSL #SSN
Anette Lindberg Fried.. @anettefri
6K Followers 1K Following 🇩🇰vaccine injured by Pfizer 💔🫁… Chairman: https://t.co/ZoJ0xXxyML
Alison. Life from �.. @CraftsByAlison
2K Followers 1K Following me 😊..posts belong to my brain & nobody else. 🏴 Trust is earned, lie & I will never trust you again The Governments of the UK have let us down
Hibbsy1973💜 @hibbsy1973
8K Followers 5K Following 💙VIB UK Campaigner💙 Diagnosed VITT - a blood clot condition caused by the AZ jab. I will not stay silent & not giving up the fight for all who’ve suffered.
R. Anne Teaze 🥄�.. @teaze_r
1K Followers 2K Following Financial markets trader/investor 📈 #vaccineinjured w/ #POTS which onset after my Pfizer Covid vaccine #NEISvoid🦓🥄
Charlet UKCVFamily @Charletukcvfam
1K Followers 491 Following 45yr old previous sports/remedial therapist, injured by Astrazeneca. Founder of UKCVFamily the UK's largest Covid19 vaccine injury and bereavement support group
Hicksy @hicksyalex
22K Followers 19K Following The government is failing to keep the public safe from harmful medicines, medical devices & blood products, will you sign my petition calling for change? ✍️👇
Ward S @Ward57434516
1K Followers 330 Following Widowed by the AstraZeneca Covid Vaccine. Trying to get support for other vax injured and bereaved.
leonie Gray @l3onieGray
58 Followers 258 Following
Faithless @FaithOxenbridge
2K Followers 3K Following Tired of defending my reality. Vax induced ME (still pro Vax) Bedbound. Not tired; sick. Used to write & teach. Here for the research and outrage.
ExposeTheNWO @CFVertigo76
743 Followers 490 Following Hearing impaired from MMR vaccine in 1977. COVID was scam for depopulation. Repeal Federal Reserve Act. Satan is a murderer and liar
Dtl Leye @LeyeDtl
74 Followers 178 Following
Jeannette Burmeister @JKBurmeister
2K Followers 728 Following Attorney (California, formerly licensed in Berlin, Germany), successfully sued NIH + HHS for ME-related FOIA violation (incl. all of $140k attorneys' fees)
Luna @Scarlet57584216
9 Followers 791 Following
Mathilde_Ber @MathildeBe26223
18 Followers 2K Following
Anton Martin @Anton_Martin_EU
374 Followers 1K Following @AstraZeneca sold an untested vaccine that was suspended after people have died from Covid. They made billions from @NHS. I collect death certificates @O2 🩼
JJ @M02181653M
2K Followers 5K Following #TreatLongCovid #LongCovid #Notrecovered #MECFS #MillionsMissing #PwME #BC007
PrayingNews @Praying_News
394 Followers 2K Following The Lord's judgment will continue until we deeply realize how powerless we are and that we cannot live without relying on God. https://t.co/FEbQIcUaWS
Bruce Sh @sh67139835
386 Followers 527 Following Vax injured. Disgruntled Canadian. Retired professional.
Laura Boyd @zuzzlynn
17 Followers 91 Following
Bryonna Jones @BryonnaJones
88 Followers 211 Following Awesome Fun FUNNY and ME #AskBryJo Someone with Cerebral Palsy Before it had a hashtag (#CerebralPalsy )and proud to not be defined by it.
TruthIntegrity @hire_white16333
189 Followers 896 Following Been adversely affected by corruption (our govt) a scam (banks), yr doctor or anything else? WEF WHO UN NATO, illegal wars unnecessary wars NO more wars.Say NO.
Steph 💜💜💜 @mummahbear11
172 Followers 381 Following 💜💜 Lost my wonderful dad to 1x AZ💉April 2021. Proudly awake through sleepy times 💜kill shot batch number: 💜AB0003💜
Dez @cgdez1
145 Followers 238 Following Co-founder @ControlGroupHQ - solutions architect, data engineering and analytics.
Chris @pigott24
2K Followers 3K Following God, Family, Country!!⛪️🇺🇸🏖🏖 #Saints #HailState, Army Veteran #AutoimmuneEncephalitis #VaxInjuried #safeandeffectivemyass
Sara Bat @sarashushnow
3K Followers 4K Following Not as stupid as I look! Devil's eyes! Always truthful. A bit of a wind-up merchant apparently. Atheist until I die 🤗 DMs will pe posted 😉 #FBPE
Karen Kim @kim293446
30 Followers 208 Following
melisande randle @laxsuperflygirl
19 Followers 916 Following
Gina Harrison @ginaUKCH
129 Followers 881 Following A pureblood, born in Newcastle under Lyme, living in 🇨🇭 and taking responsibility for my own health and wealth
Ulan @Ulan0000
1 Followers 86 Following
My Long Covid Advocac.. @myLCadvocacy
2K Followers 5K Following MLCA is your trusted source for Covid | Long Covid - Science, Stories & News. #covid #longcovid #pasc #longhauler #postcovid #MyLongCovidAdvocacy
Run from the madness @DavidHartleyWi2
307 Followers 2K Following
Steve Bowie #Vax Inju.. @bowie792
2K Followers 2K Following Medically disabled after AZ . The mainstream media are only prepared to show one side of the story, I'm the other side 🙏.
harji @harji11136770
765 Followers 5K Following
Rory Lane @Boulmer5
1K Followers 2K Following be a person of worldly intelligence of you desire to sit with kings. the man who only carries the limited scope of his village will be a laughing stock
Kara Potter @KaraPotter26273
336 Followers 117 Following
Purple Heart @Annette83496047
545 Followers 576 Following Confirmed AZ Covid vaccine adverse reaction, fighting for treatment and fighting to get heard 💜 Batch number: 4120Z003 made in India Covishield
Truth/justice/freedom.. @KimFlorey2
5K Followers 6K Following I WILL NOT COMPLY. NO lib/lab/con #msmlies #vaxinjured #ME/CFS AZ #PV46669 #agenda2030 #antiwef. #fthewef #chemtrails #fuckcensorship NO DM'S
BreizhPowerGirl @BreizhPowerGirl
784 Followers 3K Following Bretonne #CovidLong depuis le 13/03/2020… Une vie suspendue… Omicron 29/01/2022 et 07/12/2022 #Covid19 #covidlong #longcovid #ApresJ20 #EM #SFC #pwME #MPE
Melanie-Jayne @melania_jayne
1K Followers 1K Following 💉AZ 🦠#vaccineinjured 2021 Gaslighted but Won’t be silenced. Be kind, Always. My son, My world 🌎❤️
Nina A Tomei, MD @doctormom63
4K Followers 2K Following Life derailed #Sjogrens #MECFS #POTS #LongVax Child with #LongCovid Surviving Not Living. Sick Not Tired. Tweets not medical advice. We just want our lives back
Common Knowledge Edin.. @WeRComKnowledge
501 Followers 650 Following Ignore the NWO, build a pro-human community. Re/tweets are debating points. For all our platforms: https://t.co/RzjSKtxxcF
Devin Harner @devinharner
168 Followers 403 Following English and Journalism Professor @ John Jay College/CUNY. University of Delaware alum. From Lancaster, PA.
probablyautist 🪐 @probablyautist
1K Followers 2K Following Neurodivergent human meat sack | covid #vaccinedamaged (thanks @AstraZeneca & @NHS) | #POTS #mecfs #millionsmissing #neisvoid
Kirstie Sivapalan @KirstieSivaP
3K Followers 2K Following Making a noise about the injustices & lack of support for #pwME #LongCovid 💙 @[email protected] 🐘 @KirstieSivap 🐳 @kirstiesivapalan 🧵
Wendi X. 💜🌏🌎.. @WendiKi03608264
91 Followers 1K Following Patient & Consumer Advocate. Esp Medical & Legal Delivery Systems DAYBREAK~ii: iNViSiBLE BRiDGES
Janiesaysyay @janiesaysyay
9K Followers 8K Following Corporate research My conspiracy theory: It Came From a Lab Advance search #snakes or #pandemicplaylist and @Janiesaysyay
Micheal Patricia Fx�.. @patricia__binar
621 Followers 5K Following SENIOR ACCOUNT MANAGER 💼 OPEN FOR BUSINESS 24/7 EARN OVER $10,000 WEEKLY 🤝 TRADE WITH LEGIT COMPANY📈📊 AND TESTIFY LIKE OTHERS SAFETY WITHDRAWAL👌💯 DM💻
benevolant Cunt @BenevolantCunt
114 Followers 281 Following
lorraine rawson @loggyrawson
110 Followers 266 Following
Alex Mitchell @ake2306
34K Followers 17K Following VITT (VACCINE INDUCED THROMBOTIC THROMBOCYTOPENIA). There are 445 VITT's and tragically 81 fatal cases. https://t.co/6TIq6Fe5l9
Adam Rowland MSc @oneadds
26K Followers 3K Following Physio/S & C Trainer- 16yrs Pro sport; Ballet ,Rugby, Military, PGA tour, severely injured due to AZ 💉 vaccine
Harriet Carroll: Long.. @angryhacademic
8K Followers 4K Following #LongCovid Scientific Consultant Hon Research Fellow, Lund Uni PhD Nutrition & Metabolism Tweets: nutrition▪health▪all-things-science▪activism▪#TeamClots
jules serkin @julesserkin
20K Followers 10K Following #Radio presenter @scoffquaff Xmas special show #BBC #PR #health #hospitality Listen: https://t.co/3DXO3weePd
Gareth Eve @garetheve
24K Followers 1K Following
React19 @React19org
39K Followers 167 Following React19 is a science-based nonprofit offering financial, physical, and emotional support for those suffering from long-term COVID-19 vaccine adverse events.
Louie Traub @louietraub
17K Followers 432 Following Independent visual storyteller 📸 | Nomad 🌎 | Dog dad (in spirit) 🐾 | Justice for the vax-injured @react19org ✊ | #MakeWaves | #GoKingsGo
UKCVFamily @ukcvfamily
8K Followers 930 Following UK Charity for the Covid-19 Vaccine injured and bereaved Registered Charity No: 1207178 Core Participants in the UK Covid-19 Public Inquiry
Mike Yardley @YardleyShooting
77K Followers 10K Following I'm a writer, broadcaster, military historian & psychologist. I campaign for Liberty, better political representation & against PC censorship.
💜Anne W. 💜💜 @AnnieWBelle
6K Followers 2K Following 💜Heartbroken mum wanting justice for my wonderful son who was killed by the AZ covid vaccine and died aged 32. Seeking justice for all vaccine harmed💔🙏💜
Christopher J William.. @Christo19725794
5K Followers 3K Following v, injured, raising awareness for the injured,
SBtheNP, FNP-BC @ResearcherNP
4K Followers 437 Following Nurse Practitioner and Researcher. Former career in International Relations, Political Science, and International Development.
Caroline Pover @CarolinePover
7K Followers 186 Following Author, Auntie, Pickler, Speaker, Volunteer, Vaccine-Injured https://t.co/NgD1sqU80e https://t.co/XfCtZTXw99 https://t.co/VEYWCNVICR
LongCovidPharmD @organichemusic
37K Followers 1K Following Doctor of Pharmacy. Long Covid, EBV & ME/CFS research. Here to share & learn. Tweets not medical advice. https://t.co/jqc4g8cFLa https://t.co/lKQezPwtQs
Kath Lanc @lanc5la55
2K Followers 3K Following Freedom loving Lancashire lass, vaccine injured by AZ 4120Z003 in March 21. Against discrimination, for free speech.
Christina @Christina_Wood1
2K Followers 1K Following Mum 💜 Earth Scientist - Glaciology, Quaternary Geomorphology. Mostly here for the netball chat 😆 #NSL #SSN
Dr Claire Taylor @drclairetaylor
66K Followers 2K Following Doctor|Special interest in Long Covid,POTS,ME/CFS&MCAS| neuroscientist🧠Long Covid kids champion|WHN expert advisor|long Covid clinic🏴Views my own
Anette Lindberg Fried.. @anettefri
6K Followers 1K Following 🇩🇰vaccine injured by Pfizer 💔🫁… Chairman: https://t.co/ZoJ0xXxyML
Stephanie de Garay @shdegaray73
19K Followers 287 Following #truthspeaker #informedconsent #maddiedegaray #trustGod
Alison. Life from �.. @CraftsByAlison
2K Followers 1K Following me 😊..posts belong to my brain & nobody else. 🏴 Trust is earned, lie & I will never trust you again The Governments of the UK have let us down
Jeannette Burmeister @JKBurmeister
2K Followers 728 Following Attorney (California, formerly licensed in Berlin, Germany), successfully sued NIH + HHS for ME-related FOIA violation (incl. all of $140k attorneys' fees)
Ziyad Al-Aly, MD @zalaly
29K Followers 938 Following Physician-Scientist | Studying Long Covid #LongCovid Profile: https://t.co/ywweQn5DHA…
Daniel Lewis (but wit.. @dsethlewis
2K Followers 379 Following Hosting the Long COVID Hour, a weekly virtual public meeting for the #LongCovid community on Mondays at 7:30pm ET
Truth/justice/freedom.. @KimFlorey2
5K Followers 6K Following I WILL NOT COMPLY. NO lib/lab/con #msmlies #vaxinjured #ME/CFS AZ #PV46669 #agenda2030 #antiwef. #fthewef #chemtrails #fuckcensorship NO DM'S
Martin Hippe @pausedME
7K Followers 471 Following East Westphalia by Nature ⎮Lawyer by Profession | #Musikrecht | #MECFS | @Mirame_Arts | No medical advice!
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. ✊
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✨
Daniel Moore @Talmandaniel
5K Followers 4K Following Curious & exhausted peace seeker, co-host of @pempodcast23, photographer and blogger. PwME, sidelined social worker, grief dealer, joy peddler, SAFC fan, He/Him
Dr. Daniel Loy @loy_daniel_de
6K Followers 1K Following Ehemann, Jurist. #MECFS. Team #SIGNforMECFS. Team #GOfundMECFS. One of the #MillionsMissing.
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
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 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.
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
Dr Keith Geraghty @keithgeraghty
9K Followers 500 Following Research Fellow | Primary Care, Medical & Health Psychology | People-focused, evidence-based | @FBMH_UoM, @PrimaryCareMcr
DecodeME the ME/CFS S.. @DecodeMEstudy
7K Followers 748 Following The world's largest study ever into #MEcfs. #pwME [email protected] - 0800 196 8664 #DecodeMEStudy #pwME #MillionsMissing
Tess Falor, Ph.D. | @.. @tessfalor
9K Followers 5K Following 🚀Space physicist➡️#MECFS researcher🧪 Founder - Renegade Research @renegaderes - RemissionBiome @remissionbiome ✨Serendipity Meets Preparation✨
Brianne Dressen @BrianneDressen
7K Followers 328 Following Mom of two. Injured AstraZeneca clinical trial participant, now disabled. Vaccine injury advocate. Co-Founder @react19org.
Vlad Vexler @VladVexler
17K Followers 841 Following Philosopher - ethics, politics, music | Slowly writing a book on Isaiah Berlin | Born in Russia, home is London | Living with ME since 2003. | 🔗 🎥
probablyautist 🪐 @probablyautist
1K Followers 2K Following Neurodivergent human meat sack | covid #vaccinedamaged (thanks @AstraZeneca & @NHS) | #POTS #mecfs #millionsmissing #neisvoid
Kirstie Sivapalan @KirstieSivaP
3K Followers 2K Following Making a noise about the injustices & lack of support for #pwME #LongCovid 💙 @[email protected] 🐘 @KirstieSivap 🐳 @kirstiesivapalan 🧵
Nina A Tomei, MD @doctormom63
4K Followers 2K Following Life derailed #Sjogrens #MECFS #POTS #LongVax Child with #LongCovid Surviving Not Living. Sick Not Tired. Tweets not medical advice. We just want our lives back
ME Research UK @MEResearchUK
5K 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)
Prof. Bernhard Schief.. @ProfSchieffer
6K Followers 151 Following interventional cardiologist, director dept. of cardiology, angiology and intensiv care medicine. University Hospital Marburg UKGM, #precision Medicine
Dana Parish @danaparish
36K Followers 4K Following Bestselling Author: “CHRONIC" / SONY songwriter/ Podcaster/ NYC/ @BayAreaLyme board/ N95s/ TREAT EARLY/ END GoF / anti-virus/ think 4 yourself/ @BiosafetyNow
Robert Saunders (aka .. @RobertHMcMullen
2K Followers 496 Following Author of "stranger and stranger," letter writer, advocate and fundraiser for biomedical ME research.
NotRecovered @Not_Recovered
6K Followers 206 Following We share the stories of people who have #NotRecovered #LongCovid | #MECFS | #PostVac We fight internationally for research, treatment and recognition.
Encephalogirl @EncephaloME
507 Followers 849 Following Former scientist, beekeeper, weightlifter, hiker…former everything #MECFS #PID ♿️
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
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.
Max Harrison @MaxSH2022
3K Followers 434 Following “Democratia, Libertas et Dominatio omnibus modis!”
Maureen Hanson @DrMaureenHanson
6K Followers 145 Following I am a Professor in the Molecular Biology and Genetics Department at Cornell University in Ithaca, NY.
COVERSE @CoVerseAU
2K Followers 101 Following Patient-led charity that supports Australians who have been adversely impacted by their COVID-19 vaccinations.
Olena ‘Olenka’ Sa.. @coco_chatel
3K Followers 1K Following Ukrainian-American. Theater nerd/former arts administrator. Left-ish Libertarian-ish. Life on pause due to #LongCOVID. Wife to @max_e_rodriguez
World ME Alliance @WorldMEAlliance
2K Followers 246 Following An alliance of ME organisations across the world, we want to see a coordinated public health response to ME from the WHO and together founded #WorldMEDay.
fereshteh jahanbani @fereshtehjahan1
1K Followers 72 Following PharmD/PhD in Pharmacology, Co founder and CSO, RTTP at Stanford, Director of Genomics and Leader of "ME/CFS related disorders" Multi-omics study at SCGPM.
Brian Fog @useless_priest
6K Followers 5K Following Struggling to live, laugh, love in the midst of a global mass disabling event | #LongCOVID Apr 2022 | #MECFS #PostVac ally | 🏳️🌈 | 🇮🇪
Covid Castaways @CovidCastaways
5K Followers 4K Following Covid Castaways focuses on helping those w/ #LongCOVID & COVID #VaccineInjury. LC - 3/2020. 💚💜“𝓢𝓾𝓻𝓿𝓲𝓿𝓮 𝓣𝓲𝓵 𝓨𝓸𝓾 𝓒𝓪𝓷 𝓣𝓱𝓻𝓲𝓿𝓮”
Karen Lubell @karenlubell
3K Followers 2K Following ME/CFS is a connective tissue disorder caused/worsened by a virus. Ppl w/ ME/CFS & EDS often suffer from Craniocervical Instability & Occult Tethered Cord.
Nina E. Steinkopf @Nina_Steinkopf
2K Followers 2K Following Former HSEQ Chief Executive. Have survived Myalgic Encephalomyelitis (ME) since 2010. Patient advocate and blogger. 🇳🇴🏳️🌈🇵🇸🇺🇳😷
Aaron Teasdale @AaronTeasdale
3K Followers 866 Following Writer & photographer specializing in adventure, natural history, & conservation. Two-time Travel Writer of the Year.
Michael Bang Petersen @M_B_Petersen
34K Followers 1K Following Professor auditing the state and challenges of democracy in the 21st century in @Magtudredningen with a focus on online hostility, distrust & crisis politics.
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.
Chris J. Maddison @cjmaddison
18K Followers 2K Following Asst. Prof. in Machine Learning at UofT and #LongCOVID patient.
European ME Coalition.. @EMEC_advocacy
1K Followers 61 Following Advocacy organization for ME/CFS patients and their carers in Europe
Wilhelmina Jenkins @minadjenkins
2K Followers 1K Following
Harlan Krumholz @hmkyale
26K Followers 2K Following Working to improve the future for those who follow us...
R. Anne Teaze 🥄�.. @teaze_r
1K Followers 2K Following Financial markets trader/investor 📈 #vaccineinjured w/ #POTS which onset after my Pfizer Covid vaccine #NEISvoid🦓🥄
I'm not sure if it's a good idea to tell this, perhaps it's only temporary, but I can sleep again 😮 I'm having 5-6 hours of sleep at night. After years of only being able to take short naps at night, that's a lot! I'm not sure if it's just a coincidence or because of 1/3
You know what, #medtwitter? Fair warning: I’m coming into the week pretty pissed off. I spent the MLK day weekend catching up on reading and thinking about the experiences of people with #LongCovid, chronic #lyme, #MECFS and other PAIS. I finally read Brian Vastag’s touching 1/
@ShaneyWright @MelanieWeckert Because the persistent viral protein causing most of the damage has been the full spike protein that Dr. Fauci pre-selected as the mRNA antigen, our global community has undue respect for scientists & journalists who venerate authority, and we fall for PR campaigns.
@GingerMEdwin @EricTopol Exactly. Lazy neurologists plus psychs foaming at the mouth to diagnose nonsense psychological crap when issues are KNOWN NEUROINVASIVE/NEUROTROPIC PATHOGENS. That's why we are stuck. No more. It has to stop. #pwME Lyme & now #LongCovid suffer horrifically through MD idiocy.
@az_longhaul I've just been diagnosed with ME/CFS. I had one jab of #astrazeneca batch no #PV46669. Look at @julesserkin page. Lots of problems with batch no starting PV466.....
Attending #MECFS2023 today. It's totally unreal and amazing how intricately some of these researchers understand what's happening at a molecular level! #LongCovid
#MECFS2023 Rob Phair starting off series of talks about itaconate shunt. Explaining the model, his updates, the evidence. Exciting day.
I've been posting about opportunities to participate in #MECFS and #LongCOVID research as I learn about them on the #MECFS2023 meeting. Collecting all of them in this thread
The world's leading industrialised nations need to establish research programmes to combat post acute infection syndromes (PAIS) such as #LongCovid and #MECFS. Millions of people cannot be left without treatment. @NIH @NIHRresearch @BMBF_Bund @EU_Health
1) It was a very special experience for me to be able to speak so extensively about #severeME. About what having severe M.E. means. How it’s affecting me on a daily basis. How I became severe. What people with severe M.E. need. What needs to be done better and how I cope with
🎥 𝗘𝗲𝗻 𝗶𝗻𝘁𝗲𝗿𝘃𝗶𝗲𝘄 𝗺𝗲𝘁 @AnilvanderZee In de video beantwoord Anil vragen over het leven met #SevereME. Hoe het is om ernstige ME te hebben, hoe hij ermee omgaat, het volhoudt & wat er nodig is. Rauw, eerlijk en met veel compassie. youtu.be/cInSsoxM0Zg
Soon, we will be formally announcing the launch of our new clinic: a center dedicated to recovery from complex chronic illnesses. In this clinic we will treat folks with conditions like #EDS, #LongCOVID, #MECFS and #LongLyme. We were incredibly intentional about the decision 1/
This autopsy study found #SARS-CoV-2 RNA in #vagus nerve samples obtained from severe #COVID-19 patients. Direct infection of the vagus nerve was accompanied by inflammatory cell infiltration derived primarily from monocytes: pubmed.ncbi.nlm.nih.gov/37452829/#:~:t….
On Severe ME Understanding and Remembrance Day my thoughts are with all those suffering silently, chained to their beds, hiding in the shadows, waiting in vain for a better day that never arrives. #SevereMEDay #EndMEMalnutrition #MyalgicEncephalomyelitis
@VladVexler @jenbrea It's worth also bearing in mind there is *no* data showing vax prevents MCAS/POTS/ME type outcomes specifically. Only these case data (& significant EHR data wrt POTS per my other comment) pointing in the other direction.
@jenbrea Hello remarkable Jen! Such an important Q. Sorry I don’t know. Though perhaps also worth us bearing in mind that in some (very rare?) cases vaccines may increase odds of developing Long Covid. E.g. a vaccine making pre existing MCAS worse leading to LC after the next infection.
Management involves interventions like pacing (expending only enough energy for which your nervous system has the blood supply) and reducing inflammation. (Tricky, but interventions like LDN and treating MCAS helps many patients.)
Treatment involves identifying (diagnosing!!) the underlying pathological mechanisms causing hypoperfusion, of which some are known. Others, I suspect, are not.
In both animals and humans. We see things like elevated lactate and inflammation, both of which have been documented in ME patients in numerous studies. (So has hypoperfusion of the brain, for that matter!)
The patients experience when their nervous system is required to produce energy under conditions of hypoxia (low oxygen), which is caused by hypoperfusion of the brain and/or spinal cord. There is a wide literature on metabolism under conditions of hypoxia...
Just sharing @edyong209's excellent article on post-exertional malaise (PEM), a hallmark feature of ME and ubiquitous among #longCOVID patients. MD's, we can also experience fatigue but these are completely different things. My take? PEM is a neurological symptom...
🛑I wrote about what “fatigue” really means for people with long COVID and ME/CFS, and why this profoundly debilitating symptom is so often misunderstood and trivialized. (This piece also covers PEM.) 1/ theatlantic.com/health/archive…
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