BendyHEDS&Co 🐴🦓🥄👩🏻🦼😷#NEISVoid#CleanAir🌍🕊 @luvenice_h
Helping awareness of #EDS & Hypermobility Spectrum #HSD = #POTS #MCAS #MECFS #CSFleak #SIH/IIH #Stenosis #CCI #TMJ #ON/TN #GP #CRPS #SFN & more ⬇GPtoolkit⬇ gptoolkit.ehlers-danlos.org S.W UK 🟦🌤️🟦 Joined May 2011-
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I want to say something to the people with mental health conditions that have got in touch with me worried / panicked about the govt news on possible benefits changes... NOTHING HAS HAPPENED. - The govt has put out a green paper. That is an EARLY STAGE consultation document.…
Looks like Twitter thinks the #MEcfs community's global open letter to @sajidjavid over his Westminster Hall debate is important enough to warrant a trending news item #BringMillieHome #SaveCarlasLife x.com/i/trending/178… Sign it here: openletter.earth/sajid-javid-pl…
I leave it here #RagehOmaar #ItnNews
Updates on what we're doing, #BringMillieHome #SaveCarlasLife, #MEAwarenessDay and some other thoughts...
I'll be taking part....will you? @RorPreston has my full support with this fabulous #DearMinister campaign for #MEAwarenessDay @MrTopple has written about it in a NEW article today thecanary.co/trending/2024/… #pwME #SevereME
This is IMPORTANT: Moderna and Sunak @GoodLawProject has won a case so that Rishi Sunak has to disclose his dealings and messages with his former hedge fund Theleme. Sunak as Covid Chancellor brought in a partner from Theleme to the Treasury as advisor. Note also Theleme…
This is IMPORTANT: Moderna and Sunak @GoodLawProject has won a case so that Rishi Sunak has to disclose his dealings and messages with his former hedge fund Theleme. Sunak as Covid Chancellor brought in a partner from Theleme to the Treasury as advisor. Note also Theleme…
@DrAmirKhanGP Let's give the sick what they need @RishiSunak - Health and social care settings that are safer from #airborne disease #COVIDIsAirborne petition.parliament.uk/petitions/6545…
With the government claim to be cracking down on “sick note culture” I gave my opinion Yes, there are those who play the system but to stigmatize people who would love not to be in pain, depressed or disabled? Let’s not blame the sick for the financial woes of this country
UPDATE 6pm 18/4 #SaveCarlasLife: Thanks to YOU - yes, ALL of YOU - Carla's dad has been able to block the door window off AND neurology will be seeing Carla first thing tomorrow. This is thanks to the community's action. Not us, not a charity - YOU. Remember that #ExposeMENow
@carolvorders @AngelaRayner How many officers are going to be needed to investigate all the corruption in the Tory party? If we need 12 for Angela's possible error over £1500, the whole police force are going to be tied up investigating Johnson & Sunak's missing Whatsapps and all the rest of them.
The Times reports at least a dozen police officers are now investigating Angela Rayner @AngelaRayner over her council house. What????? Greater Manchester Police should be investigating real crime surely, not the trumped up, absurdly hypocritical accusations of a desperate…
The Times reports at least a dozen police officers are now investigating Angela Rayner @AngelaRayner over her council house. What????? Greater Manchester Police should be investigating real crime surely, not the trumped up, absurdly hypocritical accusations of a desperate…
@JimBethell OH look Jim! They are acknowledging #LongCovid in Germany. Can we do that here do you think? Do you know anyone who is in a position of power and influence who can speak up about the long term health of our children? x.com/ZurNull/status…
@JimBethell OH look Jim! They are acknowledging #LongCovid in Germany. Can we do that here do you think? Do you know anyone who is in a position of power and influence who can speak up about the long term health of our children? x.com/ZurNull/status…
@JimBethell The answer is to mitigate for Covid #CleanAir please listen to this.
@JimBethell The answer is to mitigate for Covid #CleanAir please listen to this.
@JimBethell Do you ever read your replies? *waves* x.com/aaronca11/stat…
@JimBethell Do you ever read your replies? *waves* x.com/aaronca11/stat…
As of 2pm on 16 April, Carla was unconscious for 24 hours. Yet doctors have done nothing. They don't believe she is having seizures. They have not got other specialisms such as neurology or cardiology involved #SaveCarlasLife #ExposeMENow Full story below: thecanary.co/uk/analysis/20…
On X: Dr says someone should at least try graded exercise... Every #pwme I know tried to maintain their life, I volunteered, gardened, shopped, walked my dog, studied, self employed. I'd say it was very graded exercise... Not at gym. I got sicker and sicker and sicker.
@PickardJE @trussliz 'I'm not saying I cared. No one in the @Conservatives cares about ordinary people'.
It's fitting that the interview for Liz Truss's new book ' My Delusions & How I Woke up to them ' is on a set that looks like it's taken from ' Victoria Wood: As seen on TV ' 👍😳 #ToryGaslighting
It's fitting that the interview for Liz Truss's new book ' My Delusions & How I Woke up to them ' is on a set that looks like it's taken from ' Victoria Wood: As seen on TV ' 👍😳 #ToryGaslighting
It’s launch day! Liv Struss’ book is out! (A Liz Truss Parody) Check out this promo!⬇️ #LizTruss #10yearstosavethewest
@BenClaimant @Indigobanana23 @currys Err @currys, if you ‘deliver’ a tv by leaving it on a doorstep where it’s of course going to be stolen, that’s 100% your fault and you need to give this customer a replacement
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
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]
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]
Candace D. @DiaryofaSickGrl
12K Followers 1K Following Wife. Mother. Dog mom. Chronic illness advocate. 🥄♥️ #hEDS, #MCAS, #POTS, #foodallergies, #cornallergy, etc.
Lisa (she/her) 🏳�.. @Sandyboots2020
46K Followers 24K Following Covid is Airborne, Clean Air for All, #DavosSafe, Dyslexic, Refugees Welcome, Feminist, Socialist, #CeaseFireNow No DMS -it’s Twitter not Tinder
Billy Hanlon @bhanlon15
12K Followers 11K Following Director of Advocacy & Outreach, Minnesota ME/CFS Alliance | Long COVID Ally
Jeannie Di Bon @jdibon
10K Followers 1K Following Internationally recognised EDS/HSD Movement Therapist. 15 yrs EDS experience. Author, Speaker, Educator. IMM, The Zebra Club & Moovlite. MSc Pain Mgt
Dan Wyke 🦠➡️�.. @Dan_Wyke
13K Followers 6K Following M.E. patient, advocate, person-centred counsellor (see link), recovering poet
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.
Joanna No Banana @JoannaNoBanana
31K Followers 21K Following Joanna (she/her) 28 Queen of Allergies 👑 MCAS, POTS, EDS & CCI💛 Autistic, ADHD, OCD. PMDD. Check out @allergybeauty for allergy friendly products!
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
Dr. Alice 💕 @calirunnerdoc
26K Followers 1K Following Cardiologist,Advocate,🏃🏼♀️,✍🏻,Posts≠medical advice. NO DMs for med advice,SARS-CoV-2=persistent vascular bomb💣.Views expressed are my own,not my employers.
Jeffrey Lubell (EDS, .. @JeffLubell_C19
3K Followers 510 Following I am exploring treatments for my daughter's EDS & ME/CFS & implications for people with #EDS, #MECFS, and #LongCOVID. Not an MD or professional scientist.
The Ehlers-Danlos Soc.. @TheEDSociety
24K Followers 6K Following The global nonprofit organization dedicated to change and progress in the world of Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD).
Oh TWIST! @H2OhTwist
9K Followers 4K Following Oh, That's Why I'm So Tired! Ehlers-Danlos Syndrome survivor & writer. She/her. Co-author #EDSToolkit for doctors. EDS / HSD isn't rare, just rarely dxed. PDX.
collagen machine brok.. @chronicallybeee
15K Followers 4K Following enbrel slut | she/they | #FreePalestine | https://t.co/hFC0B2O8QQ
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.
Ehlers-Danlos Support.. @ehlersdanlosuk
19K Followers 11K Following EDS UK is committed to changing the futures of people with Ehlers-Danlos syndrome (EDS) and HSD. With awareness and early diagnosis we can change lives.
Erica Ramos @ERamos62612
91 Followers 3K Following
Happy Zebra @CheeryZebras
64 Followers 147 Following Focus only on what makes you happy. Reposting funny, cute and helpful stuff for Zebras (eds awareness). Pics and videos are mostly not my own.
Kelly D 07 @Daley07Kelly
993 Followers 3K Following I am a mum with EDS, Autism and complex physical and mental health issues. I have an adorable son who is my world. Please help me make a change in medical law.
Tiffany Dages @TiffanyDages
890 Followers 3K Following Lifelong vEDS warrior🦓 7th gen Floridian🍊foster/adoptive mom 💐hospice volunteer🤗x-stitch🪡Dem💙
David Rose @davidrose88
1K Followers 2K Following Working with @RareRevolutionM. Rare disease patient 🧬 Life drawing model.
✨🕊️A Rey of Li.. @areyoflight
2K Followers 2K Following artist + writer • anti-fascist • revolutionary socialist • british-spanish • celtiberian • disabled • social ecology • climate crisis • ♿️☮️♻️🕊️🇵🇸
Susan Kandarian @susan_mecfs
1K Followers 813 Following Professor-scientist (muscle biology) on LTD from progressive #MECFS. Ally for ppl with infection-associated chronic conditions. #longcovid 🏳️🌈
Rete Long Covid Press @ReteLongCovid
145 Followers 1K Following Benvenuti nella Rete Long Covid Italia 💙 https://t.co/T6NThQfoQL
Dr LG @subversivepsych
4K Followers 5K Following 🇮🇪➡️🇪🇸Dr(MD/MRCPsych) BSc(Hons)Pharmacol. Not medical advice. Life on hold. SARSCoV2 04/20 #LC #MECFS #CH #coagulonaut p/t #sloth 🦥 #endmedicalgaslighting
Joanne Wisely @poppysweeney
0 Followers 341 Following
Hannah @starry8nightsky
429 Followers 1K Following crazy cat girl, vegan, EDS, FND, ADHD, #actuallyautistic #traumanotpd 😺😸😹😻😿🙀😽😾😼
NickyProctor @NickyProctor
1K Followers 4K Following Writing up my #PhD in coach learning & development @LeedsBeckett and campaigning for better healthcare #MEcfs #POTS
Dwebbs @dwebbs47067
26 Followers 109 Following ੈ♡˳ hunter acc (not multi) • read my pinned for more, thank you! #NGC_Member
Anne Marie @annesmithmcc
2K Followers 3K Following Mum of two boys. Interested in education 🎓 and various other things. #FBLC
Ashley Donn @ashley078915
49 Followers 274 Following RN. Worship leader and singer. Ehlers Danlos Syndrome/related conditions advocate. Dog lover. Isaiah 41:10.
JJ @M02181653M
2K Followers 5K Following #TreatLongCovid #LongCovid #Notrecovered #MECFS #MillionsMissing #PwME #BC007
Becky @B_Colem
2K Followers 5K Following All things #HR #F1 #Tech #Dogs #Disability #WomensFootball World 33 quad #WheelchairTennis 2017 I play ♿🎾 for 🇮🇪 Oh #Singapore 🇸🇬 💖 feels like home♿😍
Maria-louise Williams @Mariararoo
1K Followers 3K Following Severe M.E warrior (One of the missing millions). Crohn's disease in remission.
Rich Adventure @RichAdventureUK
161 Followers 472 Following Rich Adventure is a family run training provider for outdoor activities and first aid based in Central England
Nori @NorwaySkandin
2K Followers 5K Following Lebt in D, liebt Natur und Skandinavien, privat hier, alle Medien sind Eigentum von mir, bitte um Verständnis, dass ich nicht automatisch zurück folge.
Victoria Williams @vrw123
2K Followers 3K Following Author of reference books & wildlife illustrator. PhD in fairytales. Cat lady. Londoner. Old film nerd & Gothic girl. Fan of snow & clouds.
Ehlers-Danlosův synd.. @ehlersdanlosuv
30 Followers 192 Following Twitter účet pacientského spolku Ehlers-Danlosův syndrom a syndrom hypermobility. Pro více informací navštivte naše webové stránky https://t.co/TP5BoVbD0b.
Scott Daniska @scott_scientist
242 Followers 212 Following Scientist & chronic illness advocate raising awareness of environmental research for ME/CFS & more. Let's drive change together! #ChronicIllnessAwareness
PZ @pzneedsrest
988 Followers 814 Following Music🎶 Film🎞️ Investigative Journalism🧐 and Hot Chips🍟 Happiest by the sea 🌊 Living small as a #pwME #MillionsMissing 👻
APThomas65 @AThomas6582107
584 Followers 880 Following Business owner and former Cricket club chairman. I will fight this greed, continual lying, racism and cruelty to the last gasp! #Torycorruption #NHS
Tim Wright - Mental S.. @WrightchoicesLC
172 Followers 928 Following I help families affected by Neuro Conditions, to build strength and confidence to push past limitations and navigate challenges to create a life of contentment.
Laura CrowFella🌻�.. @elvee57
1K Followers 1K Following Former art therapist, musician, ocean lover, advocate for truth about M.E., #NAFO Fella, Slava Ukraini!
Kristene Richardson @KristenesTweets
417 Followers 2K Following Mom, media sales, social media manager, community engagement, grant writing & fundraising. Rolling with the wheel of life & making friends along the way.
TheTenaciousCyclist @TheTenCyclist
0 Followers 14 Following Tenacity isn't some optional superpower, it's your inner strength and something we all have if we dig deep enough🦓💪🚴
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
Kerry Harper @kerrylouharper
232 Followers 629 Following NSW DoE Teaching Principal, mother of 3 boys, farm girl, passionate Inquiry/ student centered, STEM teacher & fire fighter.All thoughts and opinions are my own.
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
Zoe Elizabeth- Chroni.. @ZoeElizabeth_CT
677 Followers 2K Following 💛I want to inspire people. I hope someone can say: ‘because of u, I didn’t give up’💛 Neurodiverse Chronic Illness Warrior who SINGS, CREATES & ADVOCATES
Janet Mackay 💙 @JanetMackay16
564 Followers 1K Following An American in Oxfordshire On Mastodon: @[email protected]
CLE change the world @Bluebirdlouise
1K Followers 2K Following still learning...making connections................................... she/her
Melanie Burden @tellmelb
1K Followers 3K Following Catastrophic Injury Solicitor, Head of Employer’s Liability at Bond Turner , Views are my own. Mother, MCFC Fan, Gym lover. Raising safety awareness
EverettMackellar @EMackellar41850
46 Followers 2K Following
POhWER @POhWERadvocacy
3K Followers 2K Following We are a UK based charity providing information, advice, support & advocacy to people who experience disability, vulnerability, distress and social exclusion
Jenny Richardson @jennysrmve71
699 Followers 4K Following please don't feel you have to follow me back - I am a stalker of smart people who know interesting things. Joined Bluesky [email protected]
han 💚 21/06, 22/06 @inhellwithyou
2K Followers 993 Following sheff//dm me for cat pics 23 inside a fantasy
Alison Armstrong 🇺.. @momma_alison
366 Followers 2K Following Mom, Dog Rescuer, Lawyer, Nature Lover, Fellow with @patientrev advocating for kind and careful healthcare. Admin of @breakthefake1 #FACTSMATTER
Rae @Sunny_Rae1
12K Followers 2K Following Dr Rae Duncan MBChB,BSc(HONS), MSc,MD,FRCP, SCMR3,BSE TTE/TOE Accr. Consultant Cardiologist & Long Covid Researcher. #TeamClots #LongCovidKids #WHN.Views my own
Rob T 🎗️ @Robhaspatience
704 Followers 1K Following A Physician once said the best medicine for humans is Love❤️. Someone asked, What if it doesn't work? He smiled and said ... Increase the dose.
Amy Small @amyismall
5K Followers 3K Following GP, Norwegian/American, mum to 2 boys, wife to a Frenchman, always busy, dreaming of rest. 🏳️🌈🇳🇴 🏴🇪🇺 #longCOVID Innovator and advocate
MistSandGrass @Mistsandgrass
2K Followers 4K Following Science & medicine, politics, literature, art, history & fun stuff. Janet the Superhero fan art: eyeofthedragon25.🧬🌎🚀📚💉⚱🏳️🌈🏳️⚧️🇺🇦 she/her
Andrea Fighting for #.. @MECFSNanoneedle
926 Followers 3K Following Severe #MECFS Patient Bedridden. No energy to speak. #MECFSBiomarkers #FckTheNIH she/her I am #MECFS Diagnostic Biomarkers biggest fan!
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
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
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]
Dysautonomia Intl. @Dysautonomia
26K Followers 344 Following Dysautonomia International is a 501(c)(3) non-profit that raises funds for research and promotes awareness of disorders of the autonomic nervous system.
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
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]
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
Candace D. @DiaryofaSickGrl
12K Followers 1K Following Wife. Mother. Dog mom. Chronic illness advocate. 🥄♥️ #hEDS, #MCAS, #POTS, #foodallergies, #cornallergy, etc.
Lisa (she/her) 🏳�.. @Sandyboots2020
46K Followers 24K Following Covid is Airborne, Clean Air for All, #DavosSafe, Dyslexic, Refugees Welcome, Feminist, Socialist, #CeaseFireNow No DMS -it’s Twitter not Tinder
Binita Kane @BinitaKane
31K Followers 4K Following #LongCovid interested Lung Doctor | [email protected] | YouTube channel @LCCWYCD | Co-founder #southasianheritagemonth @SAHM_UK |
Billy Hanlon @bhanlon15
12K Followers 11K Following Director of Advocacy & Outreach, Minnesota ME/CFS Alliance | Long COVID Ally
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
Jeannie Di Bon @jdibon
10K Followers 1K Following Internationally recognised EDS/HSD Movement Therapist. 15 yrs EDS experience. Author, Speaker, Educator. IMM, The Zebra Club & Moovlite. MSc Pain Mgt
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...
Dan Wyke 🦠➡️�.. @Dan_Wyke
13K Followers 6K Following M.E. patient, advocate, person-centred counsellor (see link), recovering poet
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.
Joanna No Banana @JoannaNoBanana
31K Followers 21K Following Joanna (she/her) 28 Queen of Allergies 👑 MCAS, POTS, EDS & CCI💛 Autistic, ADHD, OCD. PMDD. Check out @allergybeauty for allergy friendly products!
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
Renuka Dhinakaran @renudhinakaran
6K Followers 602 Following International Labour Lawyer Patient Advocate for #hEDS #POTS #LongCovid #rheumatoidarthritis #Dysautonomia Focusing on marriage, parenting & chronic illness
✨🕊️A Rey of Li.. @areyoflight
2K Followers 2K Following artist + writer • anti-fascist • revolutionary socialist • british-spanish • celtiberian • disabled • social ecology • climate crisis • ♿️☮️♻️🕊️🇵🇸
LongCovidPapers @LongCovidPapers
2K Followers 566 Following A bot tweeting out research papers on LongCovid from Pubmed (peer-reviewed) and MedRxiv (before peer-review). #LongCovid
ReSisters @TheReSisters2
4K Followers 4K Following Hosting a spirited wkly TSpace to amplify & connect voices of women. Currently, Covid Convos for all are our jam Wed 8PM EST #WeNotMe #GoodTrouble
DM @dustinmcd123
770 Followers 1K Following Former Junior Fellow at Centre for International Governance Innovation. #longcovid advocate #provax
Rete Long Covid Press @ReteLongCovid
145 Followers 1K Following Benvenuti nella Rete Long Covid Italia 💙 https://t.co/T6NThQfoQL
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⬇️
The Rambling One @RamblingEx
273 Followers 582 Following Hi there, I am just a guy trying to get a bit of peace in his life.
Victoria Williams @vrw123
2K Followers 3K Following Author of reference books & wildlife illustrator. PhD in fairytales. Cat lady. Londoner. Old film nerd & Gothic girl. Fan of snow & clouds.
waysidewhelp @waysidewhelp
2K Followers 3K Following Former BSL-2/3 Preclinical Researcher, now surviving #LONGCOVID, #MCAS, #EDS, & 20 yrs of #MECFS. Artist, Bio Major, & Dino/Bird Nerd. N95 Respirator Fanboy!😷
Scott Daniska @scott_scientist
242 Followers 212 Following Scientist & chronic illness advocate raising awareness of environmental research for ME/CFS & more. Let's drive change together! #ChronicIllnessAwareness
PZ @pzneedsrest
988 Followers 814 Following Music🎶 Film🎞️ Investigative Journalism🧐 and Hot Chips🍟 Happiest by the sea 🌊 Living small as a #pwME #MillionsMissing 👻
South Devon Primary @SDevonPrimary
1K Followers 630 Following The campaign to unite the progressive vote and end 100 years of Conservative MPs. @CarolineVoaden won with 78% at 7 town halls. We're now all uniting behind her
mask on😷no cap™�.. @trulleyamazing
277 Followers 277 Following here to bring clarity🔮healing from LC, ME/CFS, audhd burnout, & a bunch of other diseases probably. regaining my power back, & welcoming in the rEVOLution🍉
The Real M.E. 👩.. @therealmecfs
1K Followers 675 Following Chronically ill and disabled person with lots of personal opinions who sometimes likes a hat. That is all. She/her/it. oh and on the spectrum apparently.
Etta Loveday @EttaLovedayME
355 Followers 172 Following She/Her, Rising awareness for people living with severe/very severe ME! #ME #SevereME
Hannah 🥀😷💚�.. @PipsMiniTwee
4K Followers 4K Following M.E(Over24Years so far🐦🔥🪫🙄)🥄Depression,Millennial,Vegan🌱Sloth🦥Magpie✨Love:Animals🐾Piercings,Tattoos,Soaps,Crystals💎LipBalm💄J2🖤1R🎵TT🎵+More🫶She/Her
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
Maria-louise Williams @Mariararoo
1K Followers 3K Following Severe M.E warrior (One of the missing millions). Crohn's disease in remission.
Zoe Elizabeth- Chroni.. @ZoeElizabeth_CT
676 Followers 2K Following 💛I want to inspire people. I hope someone can say: ‘because of u, I didn’t give up’💛 Neurodiverse Chronic Illness Warrior who SINGS, CREATES & ADVOCATES
ange garrod 🕷️ #.. @angegarrod
3K Followers 4K Following #BollockstoBrexit Arty farty. Artist, photographer, music, avgeek, amateur lepidopterist, Dr.Who All things astro/scientific. Leopard wrangler. Proud European
Marianne M #FBPE Woke.. @mm_tw9
11K Followers 11K Following Foodie, cook, Sondheim and marketing. #FBPE Human rights for *all* of us. Against othering of 🏳️🌈+ people. As to #Covid WTF WTF WTF are we (not) doing.
Jules @therealjulesmt
310 Followers 871 Following Mam of 2, Mrs to Mr T. Dreaming of a life in France. Love red wine, good tunes & chocolate. Proud to be in Clinical research/NHS. Pro-European. Vaccinated💙
InvisibleGLove @GoreLloyd
449 Followers 728 Following DELTA-qualified EAL teacher; previously in EFL, ESOL and EAP (and subtitling). Caregiver to partner with v severe ME from Long Covid She / her
Birdtableseed @Birdtableseed
133 Followers 116 Following Not always able to keep up with twitter due to ill health Our family lives with long term post viral illness called myalgic encephalomyelitis known as ME/CFS
Janet Mackay 💙 @JanetMackay16
564 Followers 1K Following An American in Oxfordshire On Mastodon: @[email protected]
Joanne Froggatt @JoFroggatt
432K Followers 554 Following Actress. Small, blonde and likes chocolate. BREATHTAKING Coming Soon to ITV
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
Post-Viral Trials New.. @postviraltrials
4K Followers 157 Following News and updates about treatment trials for Long Covid, ME/CFS, POTS, and other post-viral and related illnesses. DM if participating in a trial or interested.
ExtroSpecteur @ExtroSpecteur
754 Followers 2K Following All that is not given is lost. Gandhi. 🇨🇮 🇪🇺 🇫🇷 🌍 Born at 319 ppm CO2 #COVIDISAIRBORNE
Luke Tera @Luke_Tera
285 Followers 216 Following 20-yr master practitioner Functional, Chinese, Evolutionary, European Biological medicine Reversing Lyme, long COVID, long Vax, autoimmune & related disorders
Doctors in Unite @DoctorsInUnite
5K Followers 4K Following The UK’s oldest medical trade union. Standing up for doctors, fighting for the NHS. A proud member of Unite and the TUC ✊
POhWER @POhWERadvocacy
3K Followers 2K Following We are a UK based charity providing information, advice, support & advocacy to people who experience disability, vulnerability, distress and social exclusion
han 💚 21/06, 22/06 @inhellwithyou
2K Followers 993 Following sheff//dm me for cat pics 23 inside a fantasy
Karen Tsang @yeepoa
2K Followers 4K Following At this point, I got nothing. You will find me around at the same handle.
Antoinette Ciserella @AntoinetteCise1
464 Followers 1K Following Mom of 3. Gma of 6. Retired. USAF-MWR Illustrator, Small-town newspaper Comp manager, graphic artist. Presently painting, living good life little green valley🌊
Corbie still wears N9.. @Corbie25
3K Followers 2K Following Protecting the vulnerable || Children are our future! || 🌈 || Christian || #LetItRip = criminal negligence. Don’t purity test me bro 😷 @Corbie25.bsky.social
Simone Gordon @ShimonaGordon
2K Followers 5K Following Disability support worker #BLM #Labour #Woke #Remainer Proud European, Pronouns: she/her 🇪🇺🏴🇮🇪🏴 🏳️⚧️ 🏳️🌈 No DM’s please.
Rob T 🎗️ @Robhaspatience
704 Followers 1K Following A Physician once said the best medicine for humans is Love❤️. Someone asked, What if it doesn't work? He smiled and said ... Increase the dose.
Strawfie Challenge @strawfie
3K Followers 5K Following A Selfie Campaign - Take a photo breathing through a straw, #strawfiechallenge Download campaign song: Breathe With Me by Betsa in aid of the CF Trust (UK)
Kati Debelic @a_parrot_or_two
2K Followers 3K Following Sick with myalgic encephalomyelitis since Nov 2008. Tweeting about health care for neglected diseases. #patientexperience #ptexp
Freddie Stabb @freddiestabb
536 Followers 790 Following 🌞Actress & Jewellery Designer/Maker🌞Disabled Talent🌞 Agent @NicBoltMan
Andrew Turner @AndrewofSussex
631 Followers 574 Following Former CIO. Husband, dad, 6 Star Marathon Majors runner. Campaigning for disabled young people to enjoy their Child Trust Fund savings without going to court.
MistSandGrass @Mistsandgrass
2K Followers 4K Following Science & medicine, politics, literature, art, history & fun stuff. Janet the Superhero fan art: eyeofthedragon25.🧬🌎🚀📚💉⚱🏳️🌈🏳️⚧️🇺🇦 she/her
curiouser and curious.. @SueSueCurious
2K Followers 2K Following Still looking for a nice Twitter bubble
Covid Diaries by HCW'.. @CovidintheChart
7K Followers 184 Following DM or email if you are a COVID CAUTIOUS HCW in or outside the US to share your COVID HCW story anonymously. [email protected]. banner:@SurvivingCFS@MartinSLewis They're psychopaths who love to hurt disabled and sick people, they get a kick out of it.
@MartinSLewis Thank you for this, Martin. The number of petrified (I use the word carefully) people I have heard from/ read about 😡 It makes me so angry at the cavalier way this government behaves.
@MartinSLewis They are nasty, cruel and self serving. The very suggestion from Mel Stride that “fairness and compassion” are at the heart of their benefit system is beyond disgusting. Ask the @UN And ask sick & disabled people.
I want to say something to the people with mental health conditions that have got in touch with me worried / panicked about the govt news on possible benefits changes... NOTHING HAS HAPPENED. - The govt has put out a green paper. That is an EARLY STAGE consultation document.…
@himmatb15 @cfs_jo I’ve also heard it is due to dysautonomia. I get it too
@AmandaB55744931 @himmatb15 @cfs_jo Yes it’s brought to be part of the poor peripheral blood flow we have in dysautonomia as well as faulty nerve responses. In some cases they do a prune test which shows people with dysautonomia don’t print up in water, as they don’t respond properly. Mine are pruney too.
@himmatb15 Standard for people with ME/dysautonomia. I’ve no real idea why.
@cfs_jo I knew the fingerprint loss is a thing, wasn't aware the shriveling and wrinkling is a thing too :/
@himmatb15 Have had this for years. A lot of #pwME have this. My fingertips have very thin skin, no fingerprints and are very sensitive. I even pricked (and it bled) my finger on my husbands beard stubble once.
@himmatb15 @Nick_Wellings @MEActNOW EDS is hugely linked to Dysautonomia though, have you got any other symptoms - such as POTS etc?
@Nick_Wellings @MEActNOW I'm thinking it might be that 🫤 part of my EDS explosion that's happened post the vax and cov
@himmatb15 Dysautonomia If it happens intermittently when your fingers are not submerged in warm water, then that is a sign of dysautonomia. forums.phoenixrising.me/threads/dysaut…
Thank you all for your help on 𝕏 /twitter and allowing me to feel that I am not alone with my hEDS disability and for inspiring me to be brave up to speak about the torturous ‘treatment’ I received as a result of nobody accepting or understanding my chronic pain and associated…
@ellecalendula @ThePOTSPostman @NHSGrampian Even then...maybe running away from lion My bestie shows me her HR at the gym, 130 or so...me standing up, 180 😂😂🫠
@angryhacademic @ThePOTSPostman @NHSGrampian If you are running.
GP is being very good and advocating for me but they were clear their hands are tied and even said this will be a "lonely fight" (for both of us). Must be shit being a dr who wants to help but others are blocking you
I'm just having a rant - not after advice 😊💛
Sort it out @jenni_minto @scotgovhealth
@PutrinoLab The nerve of that doctor, to be competent AND treat you with respect
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