InvisibleGLove @GoreLloyd
DELTA-qualified EAL teacher; previously in EFL, ESOL and EAP (and subtitling). Caregiver to partner with v severe ME from Long Covid She / her 🏳️⚧️🏳️🌈🇵🇸 hiveofactivities.wordpress.com South West, England Joined July 2014-
Tweets4K
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Likes16K
@atranscendedman @postviraltrials Except RECOVER can’t claim ignorance when they were warned over and over by patient reps that these were bad ideas. It is cruel to ignore pleas from patients.
One of the worst studies I have ever seen, that somehow has not been retracted: youtu.be/bzh8pT-g9v0 Featuring: @davidtuller1 #ME #PACE
He makes it seem like he's not interested in hearing why sb who's followed trials and has a vested interest has said it's "almost cruel". Isn't he interested in ethical science?
He makes it seem like he's not interested in hearing why sb who's followed trials and has a vested interest has said it's "almost cruel". Isn't he interested in ethical science?
@agcolehamilton thank you for mentioning Long Covid. Life destroying illness for which there are 0 treatments and a growing problem!
I can't get over what this lot have achieved in such a short time. It's astonishing, and very inspiring. I hope they don't suffer too much from all the effort. 💙 How do we nominate them for Time Health Care Person of the year?
I can't get over what this lot have achieved in such a short time. It's astonishing, and very inspiring. I hope they don't suffer too much from all the effort. 💙 How do we nominate them for Time Health Care Person of the year?
" 'Adventure therapy' & 'mindfulness' are just GET & CBT in🐑s clothing. These are treatments that could cause irreparable harm to #pwME" #ShutDownBACME @actionforme @MEAssociation
What's that comedy sketch where someone talks about their typical day and they have a quick shower about 100 times? I feel like we could replace "take a shower" with "do some activism" 🚿🏋️
I've sent my #DearMinister card, finally!
When you've seen hell and how easy it is to end up there and people tell you you're stupid to be afraid 🤯
We can't trust BACME, no, no, nope
We can't trust BACME, no, no, nope
ME has no licensed treatments but there are things that you can do to improve patient care today. Please read the CME articles outlines in this BMJ rapid response or take the 1hr CPD training course to start. #TeachMETreatME #MillionsMissing #Medical bmj.com/content/383/bm…
Arthur @unreal_arthur
12 Followers 281 Following
Dominic Brassington E.. @EALDominicB
3K Followers 4K Following Head of EAL All views and opinions are my own Retweets are not endorsements
zedsrigil @sunsweptforest
436 Followers 879 Following forest.haven they/them autistic me/cfs and more nature music outer space
💎 diamond 💎 @di.. @diamond_qc
1K Followers 3K Following She/her・Optimistic Leftie・Meat Free Diet・GenX 80s Goth・Indie Music Tragic・Tech Geek・AAF・ADHD・cPTSD・MECFS・OCD・CSA survivor・too many letters!・ 💉💉💉💉
Joan Crawford @joan_crawford1
280 Followers 1K Following
David Collins @David_Collins_
1K Followers 3K Following Carer. Recovering social media addict. Self-diagnosed ADHD. Wobbly & confused most of the time. "I don't want to kill time. I want it to live." @underworldlive
Janette Stewart @StewartStarte
2K Followers 2K Following
Erin Tarantino 🇨�.. @erincandy
10K Followers 3K Following 🇨🇦SPORTS/#LeafsForever•Movies/History/Gaming/Politics/Creator/Cat Rescuer• Anti-disinfo activist. Leukaemia cancer survivor! #LongCovid since March 2022 ♑️
It's ME Lauren @LaurenPwME
5K Followers 5K Following Disabled wife, mother, survivor, humanist, activist, and author. “Invisible Illness” available on Amazon. #MECFS #hEDS🦓 #fibro #gunsense #BLM #lgbtqally
Elisabeth Klaar | Oak.. @lammas_leaves
1K Followers 5K Following Marketing for SMEs and NGOs. WordPress Cambridge co-organiser. Mentoring & Tuition: WordPress, Marketing. #CambridgeLocalShops
tern @1goodtern
70K Followers 10K Following It's better to be cautious and kind than foolhardy and mean.
Rach @ra800800
55 Followers 214 Following
Captain Thomas @captain54792
185 Followers 3K Following
Scott Squires @scott_squires
13K Followers 7K Following Director, VFX Supe-The Mask, DragonHeart, Star Wars: Phantom Menace, etc, VES Fellow, Close Encounters- 1st film. Pol tweets my own.
KarenG @tenacious_mumma
1K Followers 839 Following Mum/carer constantly fighting 4 health care 4 my beautiful daughter @spooniesophia bedbound with #lymedisease #severeME #POTS #chronicpain #allodynia #vertigo
Martin Hippe @pausedME
7K Followers 476 Following East Westphalia by Nature ⎮Lawyer by Profession | #Musikrecht | #MECFS | @Mirame_Arts | No medical advice!
Daisy @resist_breathe
8K Followers 9K Following Done with the ignorance. Covid is still here; if you’re not protecting others, you are harming them. Radical action is needed to slow the climate emergency NOW.
Douglas Sweetman @Stockzorg
348 Followers 570 Following Cyber Security professional including vulnerability and threat management and security incident response team leadership.
KeepTalkingAboutSchoo.. @sallyrussell124
5K Followers 6K Following We didn’t go back to school. Anti Brexit, covid and tories 🤬 Likes & RTs not endorsements. #GeneralElectionNOW #SafeEdForAll #MaskUp #CovidIsAirborne
Charlotte @CharlotteClarkW
34 Followers 248 Following Blogger | Family History | ME Advocate #pwME #Fibromyalgia #breastcancer Mostly housebound. Lover of old things. Auntie to a multitude. List maker.
The Hypermobile Physi.. @hEDSPhysicist
1K Followers 3K Following #Bisexual PhD Physicist & industry engineer blogging through #ChronicPain with #hEDS #MCAS #dysautonomia. Tweets not medical advice. #BLM Speaks English, French
Maddie Kinard @maddie_kinard
370 Followers 585 Following Lover of music, animals, coffee, traveling, and great conversation. Living in Vienna.
Dr Jenny Ceolta-Smith.. @JCeoltaSmith
3K Followers 3K Following Not always X active & #NotWorkingWithLongCovid #OT PhD activist & advocate on health, well-being, welfare and work #LongCovid #FBLC #DWP +at:@WorkingWithLC
MumME @pamrosling
1K Followers 5K Following Mum & carer to severely Covid-vaccine-injured daughter desperate for treatment to get her life back :-( Also passionate about climate and biodiversity crisis.
camilla @predi_cam_ents
702 Followers 308 Following 🌿 carer for @elle_carnitine / 😷 trying to survive in a fucking pandemic / 🎨 artist
Annette Wilford @AnnetteWilford3
74 Followers 281 Following
Laura Arensdorf @lkarens
344 Followers 5K Following
🐾🐾🐾loubylu @clearlu366
1K Followers 5K Following Tweeting approx 6 weeks.RegisteredTwitter2014 ,💕🐾https://t.co/LcaQeN84cn…💕Kindness
shauna chambers @s_chambers92
232 Followers 438 Following Advocate for M.E. sufferers 💙@40for40campaign (insta) 🌈@AberTownWomen 🖤💚
Cleo 🦓♿️💙 @SpoonieTrees
2K Followers 1K Following Hi, I’m Cleo! Here to be kind, support & share helpful spoonie tips 🥄 #MCAS 🌼 #CFS 😴 #Fibro 💜 #HSD 🦓 #hEDS 🌳#LongCovid ❤️🩹 #Sicca💧#POTS 😵💫
Nicole #KeepMasksInHe.. @chronicoley_me
183 Followers 1K Following PhD in biomedical physics. Disabled, chronically ill: endometriosis, severe ME/CFS, probably more. Mixed race, acespec, avid knitter, former dancer.
Jen @Jennife24461737
75 Followers 607 Following
Yr buskined mistress .. @rhymeswithvery
2K Followers 4K Following Post-vaccine syndrome: Booster #2 05/22. Now orthostatic hypotension, Sjogren's, MCAS, pre-diabetic, fibromyalgia, #ME. Pro-vax but #FcktheNIH. Wear a mask FFS.
ALL EYES ON RAFAH @byowife
4K Followers 1K Following if ur looking for shit i posted myself u already lost the argument btw🥰 always showing my ass in some way, u can support my stupid struggles below🫶beem: eeit
Phi @phi_psd
5K Followers 938 Following Australian/Greek/Cypriot nerdy visual designer, living in Berlin. 🇨🇾🇬🇷🇩🇪 end #prescribedharm #longcovid & #mecfs @berlinbuyers
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.
Diane O'Leary, PhD @DianeOLeary
3K Followers 2K Following Philosophy of medicine/phil of mind/bioethics. Rct visiting faculty @Center4PhilSci & @RotmanPhilo. Smtms disabled by chronic disease. Happy #IndependentScholar
Covid Hurts Everyone @UserTwidder
159 Followers 1K Following Covid is dangerous, airborne, and not going away. Masking is praxis.
Nic McPaul @NicMcpaul
205 Followers 452 Following Life on pause since 2012. PWME PASC MCAS POTS HEDS CSU. Raising Awareness & advocating when health allows 🏴
Send | Unsend (Sophia.. @SendUnsend
223 Followers 478 Following Describable scribe & babbler | Work in education | March 2020 #LongCovid sufferer | She/her
WorkingAndNotWorkingW.. @WorkingWithLC
332 Followers 519 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
Victoria @VicGoesk
251 Followers 4K Following
Katie Gallagher @KatiGallagher
3 Followers 4K Following
Dr.Sandra Everlyn @DrSandra94
192 Followers 2K Following I love everything real - words, actions, feelings and....people...🇵🇸🍉
Anne Marie @annesmithmcc
2K Followers 3K Following Mum of two boys. Interested in education 🎓 and various other things. #FBLC
Post-Exertional Mayon.. @pempodcast23
728 Followers 555 Following Podcast about living with ME/CFS & chronic illness, creativity and making meaning with Dov Zeller and @talmandaniel
Gary Campion @garycampion
705 Followers 2K Following IT - Programme & Project Mgmt | Infra / OPS | Online / WWW | Local | eCom | PoD | Ai
Tom Scott @tomscott
229K Followers 272 Following I make things. They'll probably come back to haunt me in a few years' time. ▶️: https://t.co/sPckzShxW6 👤: https://t.co/zF450hHAvo 📷: https://t.co/EhCLFgcoXC
babs @halfateaspn
229 Followers 552 Following 20s. she/her. disabled, queer and poc. ME/CFS and comorbidities. mostly bedbound. no bigots. be kind. 🇵🇸🏳️🌈🏳️⚧️
SARS‑CoV‑2 (COVID.. @COVID19_disease
10K Followers 0 Following Coronavirus and other health-related updates. Regular updates on Outbreaks, Pathogens For more updates follow @COVID19_disease
champagne_TAPI’s wi.. @pbandjqueenie
441 Followers 490 Following in love with and caretaker for @Champagne_TAPI, a resident and now has #longcovid + severe #MECFS | em dashes when i’m not angry | bury me in my N95
Sam Nolen @SamRNolen
1K Followers 3K Following Machine learning, chess, languages, fiction, philosophy, history, cats, socialism. In recovery from ME/CFS, CCI, mold toxicity
Mitodicure @mitodicure
654 Followers 57 Following Start-up with the mission to cure ME/CFS and Fibromyalgia. Follow us on LinkedIn: https://t.co/KrQ7qyxX0f
Andrew Gwynne MP @GwynneMP
53K Followers 860 Following 🌹 Labour MP for Denton & Reddish | Candidate for Gorton & Denton | Shadow Social Care Minister | Husband, Dad, Grandad, owned by a Chihuahua | VIC20 user🕹👾
zedsrigil @sunsweptforest
436 Followers 879 Following forest.haven they/them autistic me/cfs and more nature music outer space
@invest_in_me (Invest.. @Invest_in_ME
8K Followers 730 Following An independent UK charity finding, funding, facilitating biomedical research into ME and providing better education and awareness of this disease in UK & Europe
UK/European Centre of.. @CofEforME
678 Followers 205 Following Establishing and developing the foundations of the UK/European Centre of Excellence for ME which would bring discovery, knowledge, & effective treatments for ME
Anna O'Neill @Annareporting
6K Followers 6K Following Reporter @BBCNews @BBCRadioLondon @BBCLondonNews. London Manc, mum, wife, friend, bunny hugger 🐇, linguist: Italian and Arabic. Story? [email protected]
Martin Hippe @pausedME
7K Followers 476 Following East Westphalia by Nature ⎮Lawyer by Profession | #Musikrecht | #MECFS | @Mirame_Arts | No medical advice!
Johan Van Weyenbergh @johanvawe
4K Followers 4K Following Researcher in #HTLV #HIV #NTDs respiratory viruses and vaccine response. 'Nothing in #human #immunology makes sense outside the light of #clinical #evolution'
Dr Jenny Ceolta-Smith.. @JCeoltaSmith
3K Followers 3K Following Not always X active & #NotWorkingWithLongCovid #OT PhD activist & advocate on health, well-being, welfare and work #LongCovid #FBLC #DWP +at:@WorkingWithLC
PenScribbler @ScribblerPen
516 Followers 600 Following A pen that scribbles. #FBLC Long Covid Support Employment Group advocate @long_covid, #LongCovidWork team member
Workwell Foundation @4Workwell
3K Followers 2K Following #Nonprofit #research laboratory providing #disability evaluations, #education, and #resources for #MECFS, #LongCOVID, and other #fatigue related illnesses.
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.
Anne @AnneinAyrshire
2K Followers 1K Following Over 30 yrs of #ME. Severely limited since 2014. Living a v small life, crashed too much of the time. Still trying/hoping. Prev life #property #financial servs
Elisabeth Klaar | Oak.. @lammas_leaves
1K Followers 5K Following Marketing for SMEs and NGOs. WordPress Cambridge co-organiser. Mentoring & Tuition: WordPress, Marketing. #CambridgeLocalShops
Rachel Francis-Mc🍎.. @RFranNutrition
245 Followers 783 Following Nutritionist- Exercise Nutrition BSc 👩🏾🎓 Clinical Nutrition MSc 👩🏾🔬
Diane O'Leary, PhD @DianeOLeary
3K Followers 2K Following Philosophy of medicine/phil of mind/bioethics. Rct visiting faculty @Center4PhilSci & @RotmanPhilo. Smtms disabled by chronic disease. Happy #IndependentScholar
Nikki @HOGGSofWAR
2K Followers 874 Following sometimes stream gaming on Twitch (on a break back soon!) || full stack web developer || Any || 😷🫶 #CovidIsNotOver 🌈
Simon Williams 🏴�.. @DrSRPWilliams
1K Followers 1K Following Interests: obesity, physical activity, epidemiology & inequalities.
Robert Saunders (aka .. @RobertHMcMullen
2K Followers 497 Following Author of "stranger and stranger," letter writer, advocate and fundraiser for biomedical ME research.
Send | Unsend (Sophia.. @SendUnsend
223 Followers 478 Following Describable scribe & babbler | Work in education | March 2020 #LongCovid sufferer | She/her
WorkingAndNotWorkingW.. @WorkingWithLC
332 Followers 519 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
Seth Abramson @SethAbramson
892K Followers 17 Following “An unreadable nonsense machine.” —Elon Musk New York Times-bestselling journalist and lawyer. 🗣️: https://t.co/bGlpbdTQ7y; https://t.co/IArPG4otQC
Mike's EU Maras for M.. @MikesEUmaras
2K Followers 2K Following Marathons in 31 Euro countries for @invest_in_me & ME/CFS research £50k. Next: Albania 20.10.24🇦🇱 https://t.co/O7zyuApvJW
Richard Lewis @Z3R0Gravitas
1K Followers 2K Following Extropian sci/tech geek. 'Moderate' #MEcfs, #ADHD-PI, #AuDHD, #dyslexic, #non24-hour sleep. 'ZeroGravitas' in PC gaming. He/him. 41. Please correct my blunders.
Miriam @miriamfrankmac
549 Followers 659 Following Comms. London. Coming back to life following Long Covid. Chasing peak health…
TheDisabilityEnthusia.. @twitchyspoonie
20K Followers 2K Following Reverse Racist. School abolitionist. Capitalism is bad. Free Palestine 🇵🇸. She/her.
Geoff Jordan @GeoffJordan16
3K Followers 1K Following PhD in SLA. Trying to change ELT practice. Working with post-grads at Unis of Barcelona, Leicester, & Wales Trinity St.David. Anarchist Animal welfare
D. @fadeintoyou7
35 Followers 128 Following Just a place to vent thoughts and feelings. Partner of someone with very severe progressive M.E. Trying to navigate this sea of grief & uncertainty.
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
Dfrizz @Dfrizz007
320 Followers 223 Following 42y/o dealing with #longcovid #MECFS since May 9th 2021. Fucking A
Amanda Bennett @AmandaB55744931
1K Followers 256 Following Usually up mountains, sidetracked by long covid since Dec 2020 (infection Mar 2020). @[email protected]
Jessica Rawnsley @JrRawnsley
1K Followers 1K Following journalist. news @thetimes. prev @pa @ft. contributor @theeconomist @newstatesman @independent @guardian @prospect_uk @theipaper @telegraph @businessgreen +
Jammer🦈 @AcrossTheMersey
9K Followers 7K Following Sharks🦈 Climber⛰️ Horror Flicks🔪 LFC | Denver Broncos | #LongCovid Warrior - Jan 2021. Over Educated Medical Professional. Receipt Keeper #NotRecovered
Pierre Naoum @PCCC90
110 Followers 185 Following
Hugh Grant @HackedOffHugh
834K Followers 1K Following
Post-Exertional Mayon.. @pempodcast23
728 Followers 555 Following Podcast about living with ME/CFS & chronic illness, creativity and making meaning with Dov Zeller and @talmandaniel
witness the sick Ness @UrgleyClark
1K Followers 2K Following she/ her. MIA Secondary SEND teacher. Volcanologist at heart. M.E, fibromyalgia, chronic migraine. Trapped in an unsuitable home #EndTheCladdingScandal
Anne Marie @annesmithmcc
2K Followers 3K Following Mum of two boys. Interested in education 🎓 and various other things. #FBLC
Rachel Charlton-Daile.. @RachelCDailey
22K Followers 3K Following Who’s afraid of little old me? You should be. Author, columnist, activist, chaosist. #TheWeekInAbleistBullshit @thecanaryuk Book rep: @portyliterary. She/they.
O. Johnstoni @einfach_machen3
4K Followers 3K Following Psychology, Health, Research, Mother, fighting for husband with #LongCovid #MECFS #maskup #ParentsForFuture, #gegenrechts Content in English & German
Royal Free 1955 @RFH1955
2K Followers 2K Following ME/CFS archive, especially RFH 1955. For education, not profit. Research @CiaranJ_Farrell & @Needles_Toosay. https://t.co/bYPmViWQCG.@atranscendedman @postviraltrials Except RECOVER can’t claim ignorance when they were warned over and over by patient reps that these were bad ideas. It is cruel to ignore pleas from patients.
It’s better than the UK situation where it is/was psychologized. They do believe that one/some of the major non-psychological pathophysiological theories (viral persistence, autoimmunity, etc.) are correct. But they don’t have the domain expertise to do $1.15bn of science here
I’ve tried so hard with this account to keep it very level-headed with researchers, but I can’t hold my tongue about what happened with RECOVER. Nobody at the NIH, Duke, NYU, or RTI leading this $1.15bn effort is qualified, and this “collegiality” may cost me a lot of my life
@postviraltrials @dukeU @duke It’s really unfortunate to see you call my Duke colleagues “cruel”—including my colleagues at the IRB that approved these trials and my colleagues at NIH that funded these trials. I had hoped that this might be a good faith discussion of science & data. Muting this convo now.
@elle_carnitine Dr. Nath thinks ME patients should be penning thank you notes to them.
“You haven’t been able to sit up for more than a year? Have you tried a melatonin supplement? Maybe some red light on your face with help” clowns
Honestly, thought I was listening to the BBC or worse, an early pandemic government press conference Next slide please 🙄
Absolutely disgusted at the @TheNewsAgents coverage of AZ vaccine. Not balanced at all. Kept going on about how tiny the risk was, with no due consideration for those who died and those of us who were harmed by this vaccine. Poor and biased. Where were our stories? Do better
@PeteJudo @davidtuller1 It's surprising that it hasn't been retracted especially when the editor of The Lancet, Richard Horton, has written so extensively about accountability in the medical profession. 🤷
@PeteJudo @davidtuller1 and i spot that your videos tend to get over 1M views so this is really good for awareness!
@PeteJudo @davidtuller1 thank you for speaking up! Liked, followed, RT’d. New fan here. Anyone who speaks up for those with MECFS is a hero for real
One of the worst studies I have ever seen, that somehow has not been retracted: youtu.be/bzh8pT-g9v0 Featuring: @davidtuller1 #ME #PACE
It makes me really pessimistic that people try anything to treat their LC and nothing seems to make a huge difference.
Never ever imagined i would be lying in my bed one day, experiencing deep envy while reading tweets about people going to the hospital for doctor appointments and tests
Got guests. They just asked for the wifi password. Had to explain to OH how it works and he came back saying we can’t find the network. Yep, that’s because the kids and I renamed it Oi With The Poodles Already! 😂😂😂
Looking at reviews for a sun lounger my husband found, to put in the shaded part of our garden and this one made me chuckle 🤭 🐶
@K8Stott @covidinquirysco An existence rather than a life. A state of near invisibility.
Thought this was about #ME at first glance 😂
Do remember when you're asking for excess energy credit back, do it politely, it's not the call centre workers fault.
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