Living for tomorrow @DownButLookinUp
Searching treatment for my wife, Myasthenia Gravis 2003 POTS, MCAS, EDS. Forgotten by society for 10yrs. Hoping for better tomorrow Fun posts: @Dailyfluffs 🐱🐶 Joined September 2022-
Tweets46
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Holiday Message for people with ME #longcovid #pwme
For 2023 I desperately hope You find the key That brings you peace And Harmony A flash of light Upon your skin The faintest touch To heal within Though your river Has long run dry A drop remains So do not cry We'll sail one day Towards the sea As better people You and me
This is #LongCovid through the eyes of a child. My birthday was last week. And this was my sweet card from my son!
Dont know why this tickled me so much 😂
Dont know why this tickled me so much 😂
@NataliaHodgins After describing your struggles: Are you going anywhere nice for your holidays? HOLIDAYS!!! 🤣
'Asking for help isn't giving up, it's refusing to give up.' - The Horse
Thoonoa @Thoonoa194711
88 Followers 3K Following
Yoko @HoliYoko
44 Followers 198 Following Holistic (mental) health therapist @ HoliCura ▫️Knowledge Heals▫️Researching for my gf’s illness
Shadow the IceHound @brian_lewis67
11K Followers 12K Following Proud to be a Welsh dad with fantastic kids. I hate what the Tories stand for and what they've done. I hate racists and homophobes. 🏴
TL Willow Boudell, �.. @TLBoudell
1K Followers 4K Following Fmr. earth & space science teacher, small biz owner, an impatient patient, etc. | Acct locked when busy, tired, or both. | RTs/follows/❤️s =interest only
Julie Houston @JulesAHouston
2K Followers 2K Following Body malfunctioning since 1998. MECFS PoTS MCAS hypermobility. #LongCovid #LongCovidKids #Pans #Pandas ally. #CleanAirForAll #MasksInHealthcare
elle W @elleW902
3K Followers 5K Following Nature lover🌊⛰wx watcher🌪️❄️ Ally🌈 ♍️creative🖌#LongCovid Sept 2021 #Dysautonomia #LCPOTS #LCHashimotos KINDNESS is the #1 attribute in a human❤
Tracy Mansolillo @TracyMansolillo
610 Followers 747 Following Writing about personal transformation, mindfulness, and living well with a chronic illness. It's The Power of Change https://t.co/2GiTuacaSM
Tess Falor, Ph.D. | @.. @tessfalor
9K Followers 5K Following 🚀Space physicist➡️#MECFS researcher🧪 Founder - Renegade Research @renegaderes - RemissionBiome @remissionbiome ✨Serendipity Meets Preparation✨
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
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!
Debbie Seymour @debbie_seymour
2K Followers 779 Following This account can no longer be managed at this time due to Debbie's deteriorating condition. She is okay, but not improving. #LongCovid #MECFS #POTS
Rhoda Watkins 👣 @RhodaWatkins10
3K Followers 2K Following Tracker, Instructor, Search & Rescue specialist. Managed by: 🇬🇧Jane Compton [email protected] 🇺🇸Seamus Lyte [email protected]
CareClinic App @CareClinic_io
5K Followers 5K Following Manage your chronic condition/symptoms, discover insights, share with your doctor, and see what works for similar patients. Try it for Free on iOS/Android👇👇👇
Dan Wyke 🦠➡️�.. @Dan_Wyke
13K Followers 6K Following M.E. patient, advocate, person-centred counsellor (see link), recovering poet
Bee 🐝🌼✨ @elbecp
1K Followers 4K Following Public Health student 🇦🇺 🇫🇮 Plant person. AuDHD. Chronically curious. Alphabet soup connoisseur. ♐⬆️ | ♃ in ♉ @elbecp.bsky.social
Rachel @RachelO3012
422 Followers 593 Following She/her. Figuring out how to live well at a slower pace with #MECFS, #LongCovid and #POTS
Denise Shotter @deegill23
789 Followers 2K Following Have Fibromyalgia & ME. Passed on to my daughters. Twitter is my access to the world. Please no DM's unless permission is given.
Ramy @ramyvaldes
2K Followers 615 Following Attorney, part time poet, musician. Life on pause due to mecfs.
Donny Monsie @DonnyMonsibais
682 Followers 3K Following My best friend was born in a manger. Married to a Gorgeous Woman. Caught Covid in Oct. 2021 survived the ventilator now fighting #LongCovid
Lisa Zett @ME_LisaZett
2K Followers 1K Following #MECFS #Lyme #Democracy #🌈Ally PhD Political Science. I do care. she/her @[email protected]
Esther @ELHopkins
12K Followers 11K Following Composer. Interested in #CleanAir #Wildlife #ClimateChange
Cats 🐱 Dogs 🐶 D.. @dailyfluffs
120 Followers 69 Following This is Skipper, we post pics + random fluffs. Wife unwell w MG EDS POTS MCAS. Pls help us by sharing https://t.co/wlqafMsZC5 Health posts: @Downbutlookinup
Todd Maderis, ND @dr_todd
3K Followers 224 Following Specializing in treating the cause of complex chronic illness #LymeDisease, #MoldIllness, #MCAS #LongCOVID #MECFS #autoimmune
Bridget O'Shea @Bridget_OShea
2K Followers 2K Following Certified medical #writer, enthusiastic #journalist, cat mom, @UChicagoProEd, ME/CFS patient. Freelance journalist. Available for medical writing and editing.
Andy Commons @andycommons_
15K Followers 9K Following “Photographer 📸 is who I am, not just what I am” THFC 🌹 for my Aunt🕊️ blocked by Kwarteng - ☕️ https://t.co/hu6mUbHQuK…
Lee Jones @LeeJone50103071
31K Followers 30K Following ALL TORIES ARE B'STARDS. Vote tactically: https://t.co/1XbTHUsNWr leealanj on Threads. https://t.co/8ZVzDUOszJ #BLM #FBPR 🇸🇩 A DM=an instant block. 🔞
The life of Sally GTT.. @sallybell08
15K Followers 15K Following Love animals more than people. Liverpool FC. Pro EU, TickTockTories. Chronically ill so Save our NHS NO DM’s you will be blocked !
Brandon Gilles @BrandonGilles
4K Followers 1 Following Curious about everything. Documenting recovery from Long-COVID (myalgic encephalomyelitis).
Julie Houston @JulesAHouston
2K Followers 2K Following Body malfunctioning since 1998. MECFS PoTS MCAS hypermobility. #LongCovid #LongCovidKids #Pans #Pandas ally. #CleanAirForAll #MasksInHealthcare
Tracy Mansolillo @TracyMansolillo
610 Followers 747 Following Writing about personal transformation, mindfulness, and living well with a chronic illness. It's The Power of Change https://t.co/2GiTuacaSM
Kara Jane @KaraJaneSings
937 Followers 351 Following ‘It’s Still M.E’ OUT NOW! Download: https://t.co/Zjn9oTnMwO All proceeds to funding vital #SevereME Donate: https://t.co/gJjPKkNPkp ♥
Jo @SEPfieldPatient
604 Followers 1K Following
Agy Lena 🏳️�.. @agy_lena
9K Followers 290 Following Ex athlete, biker, climber, 1st class biomedicine grad. Entire life lost 2017 post viral ME/CFS. C💉injured 2021 thus turned from pro to anti vax
elle W @elleW902
3K Followers 5K Following Nature lover🌊⛰wx watcher🌪️❄️ Ally🌈 ♍️creative🖌#LongCovid Sept 2021 #Dysautonomia #LCPOTS #LCHashimotos KINDNESS is the #1 attribute in a human❤
Carmen Scheibenbogen @C_Scheibenbogen
12K Followers 62 Following Immunologist and ME/CFS researcher MD @ChariteBerlin
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.
#MEAction Network @MEActNet
20K Followers 3K Following A global network fighting for equality for Myalgic Encephalomyelitis. #MEAction #MillionsMissing https://t.co/JhhNZoFYJi
Michael Stingl @neurostingl
16K Followers 1K Following Facharzt für Neurologie ME/CFS ▪ Long Covid ▪ Nervenultraschall ▪ ENG/EMG ▪ Hirngesundheit ▪ Telemedizin
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. Daniel Loy @loy_daniel_de
6K Followers 1K Following Ehemann, Jurist. #MECFS. Team #SIGNforMECFS. Team #GOfundMECFS. One of the #MillionsMissing.
Long Covid Advocacy �.. @LongCovidAdvoc
14K Followers 13K Following 📘Legislate ⚕️Investigate 🌬️Ventilate 👥Educate Advocacy4 #LongCovid #MECFS #COVIDisAirborne
Tess Falor, Ph.D. | @.. @tessfalor
9K Followers 5K Following 🚀Space physicist➡️#MECFS researcher🧪 Founder - Renegade Research @renegaderes - RemissionBiome @remissionbiome ✨Serendipity Meets Preparation✨
Gez Medinger @gezmedinger
20K Followers 720 Following Author of The Long Covid Handbook with @daltmann10, published by @penguinUKBooks (see link). Represented by the Blair Partnership @TBP_agency
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. | 🔗 🎥
Katharina 🍀 @katha.. @katha1970
885 Followers 2K Following Here for research + info on #ChronicMigraines #MECFS #LongCovid #MCS #MCAS #ChronicPain #Neuroscience #Psychology #MedicalGaslighting, posts German & English 🎶
Michael VanElzakker @MBVanElzakker
10K Followers 290 Following Neuroscience researcher @MGHMartinos / @HarvardMed and @PolyBioRF, researching #MEcfs, #LongCOVID, & #PTSD. (all opinions are my own)
Debbie Seymour @debbie_seymour
2K Followers 779 Following This account can no longer be managed at this time due to Debbie's deteriorating condition. She is okay, but not improving. #LongCovid #MECFS #POTS
Amanda Bennett @AmandaB55744931
1K Followers 253 Following Usually up mountains, sidetracked by long covid since Dec 2020 (infection Mar 2020). @[email protected]
Paul Mc Daid @paulthedaid
1K Followers 1K Following ME/CFS. Determined father. Physics graduate, science nerd, LFC fan.
Ibu Anggrek @IbuAnggrek
2K Followers 1K Following European. Learning to live with PRD pain post cancer. Miss mountains & travels. All views my own. (Follow @CUHerb for my other life & planty curationy things🌿)
CriCri♀️ @Criticoga
522 Followers 3K Following
ryann @theryguy2388
20 Followers 232 Following
Bee 🐝🌼✨ @elbecp
1K Followers 4K Following Public Health student 🇦🇺 🇫🇮 Plant person. AuDHD. Chronically curious. Alphabet soup connoisseur. ♐⬆️ | ♃ in ♉ @elbecp.bsky.social
Amy @alexandrite113
6K Followers 845 Following Long Covid to very severe ME/CFS to mod/severe ME/CFS. Tweeting into the void. DX'd autistic ✨
SJ @sharrie_hum
128 Followers 139 Following #LongCovidKids volunteer #CleanAir advocate || Parent || #PIMS, #ME, #PP #POTS aware || Also Early Years Teacher - Let the children #play!
Rachel @RachelO3012
422 Followers 593 Following She/her. Figuring out how to live well at a slower pace with #MECFS, #LongCovid and #POTS
GeoCK @GeoEduOne
6K Followers 953 Following MSc | AD | ICL, UCL, UOB alum | Geoscientist, cyclist, adventurer, athlete, dad | Sidelined after a “mild” Covid infection, Dec 2021 | #LongCovid #FBLC #Climate
Anna Kingston @AnnaBramble
143 Followers 458 Following Psychology graduate, mother, wife, runner, avid reader & researcher, writer, crafter, living with hEDS.
Denise Shotter @deegill23
789 Followers 2K Following Have Fibromyalgia & ME. Passed on to my daughters. Twitter is my access to the world. Please no DM's unless permission is given.
Ramy @ramyvaldes
2K Followers 615 Following Attorney, part time poet, musician. Life on pause due to mecfs.
Rhoda Watkins 👣 @RhodaWatkins10
3K Followers 2K Following Tracker, Instructor, Search & Rescue specialist. Managed by: 🇬🇧Jane Compton [email protected] 🇺🇸Seamus Lyte [email protected]
Donny Monsie @DonnyMonsibais
682 Followers 3K Following My best friend was born in a manger. Married to a Gorgeous Woman. Caught Covid in Oct. 2021 survived the ventilator now fighting #LongCovid
Alice @Alice_mecfs
1K Followers 686 Following #MECFS for almost a decade now. Hoping to connect with others & find a way out.
🇺🇦💙💛Ander.. @andersolofsson5
2K Followers 5K Following ♋🎗️ if you CAN help people ❤️ MUSIC IS MEDICIN! BIG C walks behind me. single @ajabajacancer #ChildhoodCancer #TG ❤️ #fuckcancer
Cassiel SparklePony �.. @sparkleponycass
1K Followers 1K Following JtoE game translator. Mostly romance/VN. 15+ years pro translating! 1 puppy, 2 kitties. She/her, disabled, neurodivergent, queer. I 💖 UTA-PRI!! & bacon.
Lisa Zett @ME_LisaZett
2K Followers 1K Following #MECFS #Lyme #Democracy #🌈Ally PhD Political Science. I do care. she/her @[email protected]
Denis - The COVID inf.. @BigBadDenis
15K Followers 3K Following Sharing info on COVID since the start of the pandemic 💻 IT Sys Admin 💪GYMaHOLIC (Pandemic forced me to invest in a home gym)
Henry Madison @RageSheen
21K Followers 2K Following All views my own. RT ≠ endorsement. Still not monetising the wreckage of society. PhD.
Anita White #DidIMent.. @RealAnitaWhite
5K Followers 6K Following Medical Practitioner, retired. Prevention is core to Public Health #KeepN95InHealthcare #CleanAir for schools now! RT/Like not endorse. Personal opinion only.
Mark @longcovidman
3K Followers 5K Following On pause: management consultant, tech founder & powerlifter. Follow for smart answers to long cov*d as I find them
Prof Gemma Carey, PhD.. @gemcarey
26K Followers 2K Following Public admin, social policy, public health. Lots of NDIS @UNSW. PROVAX, vax injured - in severe ME recovery. (And non aca-author). Views are my own
Tara Rae Moss @Tara_Moss
107K Followers 10K Following Author of 14 books. THE WAR WIDOW and THE GHOSTS OF PARIS 📖 Keynote speaker. Holistic and (Norse/Nordic) shamanic practitioner @ https://t.co/kckC5iMsrEThis has been one of the hardest #longcovid symptoms for me over the past 18mo since getting sick. Been to multiple neurologists @UCLANeurology. They say my walking issues are due to stress, anxiety, depression. All of which I do not have. “Fear of walking.” “Fear of falling”.
@SaraAna66550269 @UCLANeurology (I WISH people had told me this & believed me; even to this day. 😭🫂😭❤️‼️ So I am saying it to you now. I know you are Telling The TRUTH & NOT "Lying", "exaggerating", "wanting sympathy", "not wanting to work", etc. All of which I have been told. 😭❤️🫂🫂🫂❤️❤️❤️‼️‼️‼️)
@TheWrightFoodie No help at all from the NHS. No care plan from the GP. We just manage it ourselves as there is so little understanding or empathy. She was diagnosed by a private ME Specialist who sadly is too busy to manage her care. Sorry to hear about your friend. Does she get any help?
@agy_lena Nothing has helped me in 15 years. Most things have made me worse.
Today we share important news with you all: Kara’s death certificate has been issued, and it records myalgic encephalomyelitis as the underlying cause of her death. Kara’s family wish to thank everyone for their incredible support this week. karajanesings.com/2023/01/06/dea…
2/2 I just felt called to say this. This time of year is hard, life is hard & it’s important to not compare ourselves to others. We’re all on our own journey. However, if you do have a moment of joy, don’t be afraid to share it! #JoyInWinter can be as simple as a nice cuppa!
@LongCovidDuchy Yeah. Everyday I think of how differently I would see if the world if this nightmare had an ending. Both the way I perceive others and myself
@LongCovidDuchy People care up to a point. Many people cannot cope with seeing others with chronic illnesses.
Before #LongCovid I was naive enough to believe that when someone says they care that they care. Even if I recover from this illness, I don't think I'll ever unsee that reality.
Made an #MEawareness sweater. I do however think that it might send out the wrong message during a date or the right one depending on what you're after of course. We all know that small talk is terribly exhausting for us peeps with ME. So I guess it's actually multifunctional!👌
Holiday Message for people with ME #longcovid #pwme
A Heartbreaking Announcement Kara’s dream was to raise £100,000 to establish a post-mortem facility for research into the most severe cases of ME. Her passion, determination and beautiful music have ensured that this dream will live on. #SevereME #PwME karajanesings.com/2023/01/02/ann…
#InvisibleDisabilities also require #disability aids for improved quality of life. As a mostly-bedbound person, I need a lot of things working in tandem in order to get outside into nature. With MEcfs & severe dysautonomia, it can be a real challenge.
We’re heartbroken to announce that Kara has passed away. “Kara was a very special young woman who embraced life with love, generosity and endless determination. To know her was to know a unique human being.” karajanesings.com/2023/01/02/ann…
💙Rest peacfully Kara karajanesings.com/2023/01/02/ann…
@Talmandaniel Because my brain is tired I read the hashtag as #dfs. 😜
@Talmandaniel So love this ! 😍When I venture upstairs to my lounge, I feel like I'm entering another country 🤪😃 #MECFS
Had a bit of a change this evening... Sat on a different part of the sofa. 😂 #MECFS
@TimHuttonAu b12 injections, COQ10 supplements and nattokinase. not really woo in a they’re not proven to help way (they are proven to help) but woo in a most doctors would never reccomend it
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