Carol 🛌👩🦼😷 @TickedOffCodess
she/hers. Life on pause, 💻 Codess & 🐶 Fur-Mom #ChronicLyme | #hEDS | #HyperPOTS | #LongCovid | #MCAS | #SevereME | #SFN | 👶 SCL ✈️ MIA ✈️ ONT ✈️ SEA ✈️ SJC linktr.ee/tickedoffcodess San Jose, CA Joined October 2020-
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@Mormolykeia I follow a schedule as I have to take meds and supplements 5 times a day plus Cromolyn sodium at certain time windows if I have breakfast or dinner. Having a schedule helps my ADHD brain.
@rachioella Every single infusion I’ve had since April 2021 has triggered PEM within 12 hours. By the time I recover, it’s time for the next infusion. It has not helped with PEM or function. It has helped with one of two primary immunodeficiencies and maybe a tiny bit with SFN.
Dr. Blitshteyn's @dysclinic X account has been stolen! Please don't open any link sent from her account!! The people who stole it blocked me immediately after I posted that her account had been stolen.
That said, I wish more people would mask. As a disabled person with ME, all viruses are risky to me, but especially covid. They're risky to my disabled friends, some of which already haven't survived this pandemic. Your decisions affect real people.
People's X accounts are getting stolen right this moment Isabel Burnett from Renegade Research msged me a scam link me and is now "Techmuskfut4" Dr Nicola Clague-Baker just sent the same scam and I suspect this account is compromised too DON'T CLICK THE LINKS OR SEND INFO, 1/2
@NeuroSjogrens Unrealistic step counts especially at the severe end. I’m severe and average 175 steps. When I was mild, working full time, I averaged 3000 steps.
PEM has longstanding consensus case definitions. It's always been specific to one disease: myalgic encephalomyelitis. The definitions don't change according to triggering illness. It's a pathological (often) delayed and prolonged worsening of symptoms and function after exertion.
PEM ≠ PESE That is all. Carry on. ☺️
#SevereMEDay Jedes Jahr findet am 8.8., dem Geburtstag von Sophia Mirza der #SevereME + #MEKills Gedenktag statt. Mit 32 starb Sophia an ME, sie war die erste ME Patientin in GB, bei der ME als Todesursache durch eine Obduktion nachgewiesen wurde. sophiaandme.org.uk/docsindex/212.…
Es ist #SevereMEweek 🚨 Ich liege im völlig überhitzten Zimmer, hilflos im Bett und warte immer noch auf Versorgung @bundeskanzler @BMG_Bund
What is something basic that you really miss? I think mine is having food with my family. Either sitting at the table chatting and eating, or with a curry on the sofa. But even if they came to my room quietly I still couldn’t eat or digest food with them. #SevereMEweek
In short: ❌ Dilutes #MECFS criteria into secondary goals ❌ Relies on subjective fatigue forms over objective data ❌ Forces rigid, fast titration ignoring hypersensitivity ❌ Mandates an arbitrary 1mg cap Patients deserve better.
1) 🇩🇪 There's more info about the trial on Aripiprazole (Abilify) that will take place in the Charité. It will enrol 138 PAIS patients using a crossover design so everyone will be on 1 mg of Abilify for a period of 8 weeks. Primary outcome is the Chalder Fatigue Scale.
The term “recovery” in IACIs should always mean a return to pre-illness levels of functioning. Anything less than that should be called improvements. I am so sick of people redefining and dropping the bar lower, so that they can reach it.
@lara64390 I’m not sure. It’s only ever helped like 2-3%. Only way to find out would be to stop it, but I don’t want to change things in case it’s helping. In the past year, every change I have made seems to have negative impact.
@lara64390 Due to the repeated PEM from trialing various dosages, my baseline is now much lower. It’s much easier to trigger PEM. With a lower baseline, my fatigue seems worse as well.
@chydorina I am interested. I stopped Prodrome glia in 2024 when they ran out of soft gels and I had to switch to oil.
@lara64390 I had increased PEM on Tirzepatide which included increased fatigue. I tried doses from 0.25 mg to 2.5 mg.
I love art and the stories it can tell. But messaging matters & bad messaging is just that. Toxic positivity harms our community regularly by creating a false understanding of ME. Sadly, we have way too many clinics/orgs contributing to this, centering their own comfort. 1/
Our new study: in 121 people with #LongCOVID, recovery of the autonomic nervous system was delayed after exertion. Longer or more intense activity affected recovery into the next night. HRV may support personalised pacing and predict PEM. @KasperJanssen doi.org/10.1007/s40279…
– Help! – But have you tried just ignoring the water? #longcovid #postcovid #ableism #satire
Potatie @__potatie__
2K Followers 3K Following FREE PALESTINE 🇵🇸🇵🇸🇵🇸 “It is no measure of health to be well adjusted to a profoundly sick society." 😷 Disabled by Long Covid/ME/POTS/MCAS
carl @beatle_boots_
100 Followers 849 Following LC ME POTS sep '22, mostly housebound. mast cell-induced myofascial pain and stiffness before covid.
Well Done @welldone00
1K Followers 7K Following
Clara Valverde @enfermarebelde
5K Followers 7K Following Sick anarchist. Rebel writer. Retired nursing professor. Canadian expat. #ME/CFS #CriticalGeography #FreePalestine #Feminisms #FrailButFurious #SectBusters
It's M.E. Linda 💙 ... @HappyHoundHouse
2K Followers 3K Following 2001 PVFS 'Recovered' to 90% by 2006. Sepsis 2013 resulted in M.E. Brain/fitness 'not what it used be'. Beloved Lisnakill Myles-Happy Hound himself🌈 💔
meryl griffith @meryl_mg
1K Followers 6K Following Biomedical Scientist... Transfusion Science, Haematology, Biochemistry, Microbiology. CFS patient. RRV 🦟 all things ME/CFS & Whole Genome Sequencing
Araceli Serrano @CunqueiroEterno
603 Followers 1K Following
Dddddd @ddd_8_ddd
111 Followers 426 Following I struggle with some demons, they were middle class and tame
Worst Of Times @worstoftimes_
1 Followers 50 Following A remitting and relapsing chronic periodical. Long COVID, ME and related conditions. Satire.
Alexis Gustavo Carsí... @alexis_carsin
35 Followers 329 Following
Achelle @HarLoppar
2K Followers 7K Following Prof 😷 en prépa bio, né à 337 ppmv, 🐤🥬🥦🐸💜🍉 🐢🥛🍓 https://t.co/dWMuD7Njhl
Slash Long Covid 35 @LongCovidss2022
51 Followers 155 Following Long Covid 2022/ ME CFS / MODERATE Fatigue / PEM /SOB / Brain fog / ANXIETY / 35 years old.
Candace D. @DiaryofaSickGrl
17K Followers 2K Following Wife. Mother. Dog mom. Chronicling chronic illness ✍️🥄#hEDS, #MCAS, #POTS, #foodallergies, #cornallergy, etc.
🫶🏿 @btheeee1
4 Followers 100 Following the lover in the blue dawn @cyberch8se u aint viola davis, follow back
Suzaku has Long Covid... @Suzaku_is_tired
1K Followers 2K Following Long Covid/MECFS sufferer since March 2021 • 🏳️🌈🏳️⚧️🇵🇸🇺🇦 • Wear a 😷!!!
Ellen 🏳🌈 #St... @El_Bx
2K Followers 3K Following Quiet, anime-lover, bookwurm, rock music. History, RP, games (VTMB, DAO, Samurai Love Ballad Party and other otome games) Autistic. She/Her
paul funk @Paul_Funkw0
65 Followers 878 Following is a retired four-star general in the United States Army who last served as the commanding officer of the Army Training and Doctrine Command
Katie @katie_andME
2K Followers 504 Following 20 year old bedridden for over 4 years with severe M.E. ill since 2017 #ME #MECFS #severeME #verysevereME
Ben Bridges @Falconer084
5K Followers 5K Following Block Grok users. #EndChildMarriageNOW #ArrestTheEpsteinPaedophiles #FreeIran
💫Elle (She/They)�... @xoLaurenHillary
600 Followers 1K Following | Dreamer | Nerd | Mom | Vocalist-Musician | ADD Jukebox | Artist | Techie | Disability Advocate | ALLY | Survivor |
Karl Baty @KarlBaty1
1K Followers 7K Following Born in Tacoma, Washington. Raised in Central California and attended college at Fresno State. Married with 3 kids. Retired and currently substitute Teacher.
Maschkera 🎭 @SuentelGeist
183 Followers 241 Following Mother of a daughter with very severe ME/CFS, caregiver around the clock, #pwmecfs, #MCAS, #chronicillness, #verysevereMECFS, #millionsmissing
IconicOddball @CafeNoWay
2K Followers 2K Following Resume: Over 50+ years experience in being called the N-word and dealing with your ignorant jokes and sharing/likes of racist memes without reacting--until now.
G.K @GK08200248
181 Followers 2K Following
Catherine Harris @oovChirrupvoo
2K Followers 5K Following End Homelessness. Catholic.💙Ally.🏴. 🇹🇹. Long Covid, ME, MCAS. Sometime HA NED, former Chair Haringey Pensions Committee.
Janelle VanKannel-Hid... @JanelleHid14283
3K Followers 4K Following Systems Thinker | Reverse Engineering Chronic Illness Connecting hypermobility, Autism, ADHD, neurodivergence & Parkinson's to structural physics. 🧬🧠🚪
Gabriel @Ga7Bri7El
213 Followers 1K Following Todo es acoso menos el acoso, que es mentira, enfermedad mental, teoría de la conspiración o justicia social. Realidad material. Psicomagufadas 🚫. 🇵🇸
Buddug~EDS/ME/LC Covi... @pwsimerimiaw
13K Followers 15K Following Violence and Silence are the same.The worst kind of violence is the violence of Silence.Mum, Nan. Welsh, retired Art/design/history teacher @buddug.bsky.social
Jan @Jan995783030021
34 Followers 2K Following
🌸💮🪷 @LC_Hell_
92 Followers 853 Following
Ina • SPOTLIGHT VER... @tink_ina
2K Followers 577 Following Advocating for Very Severe M.E. to become the face of M.E. in media🌍🌐
YangLee @yangli88092
19 Followers 301 Following
Carole Bruce @CaroleBruce17
7K Followers 5K Following 💙Art, Nature, Books, Some Music. Severe ME 32 years. Daughter severe 38 years. Furious about treatment of ME. https://t.co/gEIrl86Wim
Anne L @brummann
131 Followers 643 Following Human rights, antiracism and equality❤️ Environmentalism and climate justice 💚 #antiableism Living with #hEDS and #LongCovid
Martin RJ Ⓥ Fürhol... @martinfuerholz
3K Followers 4K Following Senior Pentester · AI Red-Teaming · eIDAS/EUDI. Ex-TTL Applause 2018-2026. Building agentic AI scanners. Try everything. Be woke, be loud, be kind.
Mindy Kitei: journali... @CFSCentral
2K Followers 2K Following Science reporter who's covered ME and HIV since 1994. Author of "Shots in the Dark: An Investigation Into Covid Vaccines, Long Covid and ME/CFS." On Amazon.
Gregory Garber @matchboxsign369
1K Followers 3K Following For everyone suffering with no answers, dismissed by doctors, or gaslit into silence: you're not alone. Healing is here. Truth and love are the answers.
lindagdetroit @lindagdetroit
245 Followers 672 Following Dealing with Longhaul Covid/MECFS since the first wave. 4 year anniversary 3/24/2024 'I Create The Space For Good Things To Happen'
Princess, The Tower @APainPrincess
29K Followers 28K Following Chronic Pain Healing Portal for everyone affected by severe #chronicpain & #chronicillness—by a princess with full body #CRPS #Fibromyalgia #PainSupport #CPP
Wunderlust @Wunderlust_100
406 Followers 2K Following Lately, I ask myself. Where have all our white knights gone? Where are all the heroes? Maybe, I'm just searching for an answer for the world's pains.
Alexander @ALXCGSV
1K Followers 920 Following Covid 🦠 | MECFS 🧬 | Misdiagnosed | Poly drugged 💊 | Catastrophic iatrogenic injury & Akathisia 🧑🦼 | Advocating 🧠 | 🇷🇺 🇨🇳 🇦🇺 |
Sarah Barker @SarahBarx035
806 Followers 2K Following #SevereME #ModerateME #ME wildlife, soil,fauna,flora,
Kerry Newnham @SquashedSiren
1K Followers 1K Following Tube-fed, bedbound, a very severe M.E veteran, injured in this battle. Unlikely to come through intact or alive. UK harmed pwME & then neglected us. LW-green
Emma 🛌♿🌱☮�... @emma_vegan_mua
1K Followers 3K Following She/her. Severe ME, CCI/AAI, hEDS & co, AuDHD. Ex makeup artist, ethical vegan, socialist. #BlackLivesMatter #TransRightsAreHumanRights Support striking workers
Albert Fz @AlbertF27938158
20 Followers 238 Following
Cortney Gensemer, PhD @CortDoesScience
584 Followers 55 Following Scientist @chroniclebioai, patient & science communicator. hEDS, POTS, ME/CFS & complex chronic illness.
Slapchop 🇵🇸🇸... @SplendidSpeseia
931 Followers 862 Following A way that can be followed is not a constant way. Tweeting through the shit with chronic illness. I love self-experimenting and I hate lies ME/CFS, POTS, MCAS
Rachel @rachioella
281 Followers 671 Following Severe LC/ME ie Hell since 2023 . interested in research and awareness to help improve QOL Irish 🇮🇪 34 former travel , outdoor and adventure addict 🌳🌊🌅🌍
Sarah O'Connell @SarahOC_MECFS
5K Followers 5K Following #pwME patient 13 yrs & mum of 2 with ME, #LongCovid & PANS • ME & LC Advocate • Co-Founder LCAI • Women's Health; Endometriosis,PMDD • Sci-fi & movie lover
SweetWater Health @SweetWaterHRV
2K Followers 2K Following Are your health practices actually improving your health? Find out by measuring your stress and nervous system via HRV! Beat Healthy 💗
Katie @katie_andME
2K Followers 504 Following 20 year old bedridden for over 4 years with severe M.E. ill since 2017 #ME #MECFS #severeME #verysevereME
Nele @NeleHelena
5K Followers 1K Following I tweet about the things I don't like: severe chronic illness / ableism / toxic positivity / medical gaslighting / dysautonomia / MEcfs / autoimmunity
ember🐦🔥 they... @nonbinartree
1K Followers 1K Following queer🍄anarchist🍄audhd🍄desi🍄hEDS, ME & co🍄clean air advocate🍄herbalist🍄hysterical witch🍄passionate abt mutual aid & general believer in a better world🌙✨
Lara @lara64390
316 Followers 556 Following Moderate ➡️severe MECFS by a 22 min treadmill session in Dec ‘22 and have never recovered. In Mar ‘23 I got covid. I’ve been very severe since Jul 24
Andrew Green @AndrewG76201347
2K Followers 2K Following ME/CFS, POTS, MCAS, lupus, mtDNA, AVP-D. Female (ignore name). Scientist retired due illness/disability. Anonymous because I share medical details of my child.
witness the sick Ness @UrgleyClark
1K Followers 2K Following she/ her. MIA Secondary SEND teacher. sicko: Useless Eater.
Deb (parody) #LeagueO... @deborahbrian
4K Followers 4K Following Recovering academic, research manager, #POTS, #ChronicIllness, etc. Same handle at 🦋. Opinions my own; fools not suffered. she/her
Alisontomyradioooo @arisonsned
3K Followers 5K Following @arisonsned.bsky.social Cat and Dog botherer. YP counsellor retired. Want my bike and my health back 🩵
Carey @29Carey29
2K Followers 6K Following Here to learn and connect with others doing the same. #KeepMasksInHealthCare #LongCovid #POTS
Dan 🦠➡️🧠�... @Dan_Wyke
14K Followers 5K Following Severely ill M.E. patient; person-centred counsellor (not practicing); recovering poet (Rack & Waterloo Press)
Moonplanter @Moonplanter_
77 Followers 77 Following
Danilo.Buonsenso_Surf... @surf4children
5K Followers 726 Following Pediatrician/pedsID working on #longcovidkids, #TB, #congenitalinfections☀️funder of surf4children no profit. MY BOOK ON LONG COVID https://t.co/WoIpn8NHcq
Austin Walker 🛴 @austinxwalker
19K Followers 540 Following 4x founder, designer, engineer. sold my first company at age 25. now: building the AI layer for chronic illness. angel investing.
Efthymios Kalafatis @lifeanalytics
5K Followers 3K Following AI Engineer, Patent owner of Artificial Intelligence-assisted methodology for Medical Discovery. Tweets are mine/not medical advice or endorsements.
Bryan Johnson @bryan_johnson
2.2M Followers 677 Following Founder Immortals, Blueprint, Kernel, Braintree Venmo. Conquering death will be humanity’s greatest achievement.
Mt. St. Helens @MtStHelensWA
116K Followers 0 Following I’m here to explain myself. #parody Team Mt. St. Helen’s store ⬇️
BR Tractor Driver @BRtractordriver
125 Followers 276 Following Mother, wife, locomotive engineer, singer, learner bass player, long hauler/pwME and amateur virologist!!
Horizontal Views @horizontalviews
627 Followers 1K Following Visual Artist, Tweets from the sick bed, #ME #pwME #POTS #COVID is not over, Eng/Swe, @remissionbiome n=50 participant, poetry @diktgymnasiet
Juan Pablo Martínez @jpmartinezr_
235 Followers 5K Following de ecuaciones diferenciales a diagnósticos diferenciales
Mark Wright @markeology
17K Followers 3K Following ANI's Dad 4X9mk1nkfaXPqsqA9aeHuSc6dEMzshdopSBpi7QTpump https://t.co/MTcqVDyMpK Professor/archaeologist/PhD, recreational micropoet Impatient MECFS patient
RonaldwDavis @Ronaldw_Davis
788 Followers 22 Following
Kendra @AthenaCFS
359 Followers 481 Following Disabled advocate with #mecfs. I’m sharing my experience living in a nursing home at 31 years old to raise awareness. Welcome to the inner circle.
Juul @tiredjuul
645 Followers 664 Following Me/CFS POTS longcovid the whole schpiel lower end moderate 24 years old
Dr. Pat Soon-Shiong @DrPatrick
156K Followers 2K Following Chairman of Chan Soon-Shiong Family Foundation, Exec Chairman ImmunityBio, Chairman and Chief Executive Officer of Los Angeles Times Media Group (LATMG)
CSSIFM @cssifm
2K Followers 5 Following Chan Soon-Shiong Institute for Medicine (CSSIFM) our email is [email protected]
Lumia Health @wearlumia
1K Followers 445 Following Meet Lumia Smart Earrings. Next-gen health sensing in a form you actually want to wear. Reserve Yours Now
PolyBio @polybioRF
14K Followers 2K Following 501(c)3 transforming how LongCovid, ME/CFS, Lyme+ and Alzheimer’s are studied, diagnosed, and treated. Leading the #LongCovid Research Consortium.
Cavalier Rescue USA @CavalierRescue
3K Followers 689 Following We're with Cavalier Rescue USA, an all volunteer, national non-profit organization whose focus is to find great new homes for Cavaliers who need them.
Eliana @ElianaUku
3K Followers 506 Following #LongCovid patient (mar '20); MBA candidate @StanfordGSB | ex @37angelsny @paypal @inturnhq
Regina @regina_anita_
362 Followers 641 Following She/her. #MCAS #POTS #LongCOVID since '20. #pwME #MECFS ally. MSc Neuroscience @KingsIoPPN #LongCOVID #MECFS #hEDS research.
Bateman Horne Center @BatemanHorne
7K Followers 1K Following Bateman Horne Center is a non-profit medical, research, and education center devoted to eradicating ME/CFS, FM, Long COVID, and related conditions.
Hopkins ME/CFS & Rela... @HopkinsMECFSC
577 Followers 100 Following Our goal is to provide outstanding clinical care to patients with ME/CFS & related disorders and improve our understanding of these illnesses through research.
Chef Reactions @ChefReactions
469K Followers 475 Following Extra Salty | Side of Sarcasm *BS allergy* that annoying, monotone chef from TikTok — CR x Hedley & Hat for Meals On Wheels 👇
christina lawrence @christina_law
189 Followers 1K Following
Cat Hicks @grimalkina
14K Followers 3K Following Psychology, information architecture, open science, shifting human outcomes. Author: The Psychology of Software Teams (2026). Science * Strategy @ Catharsis
Cort Johnson @CortJohnson
11K Followers 1K Following Founder of Health Rising /Phoenix Rising - Chronic Fatigue Syndrome (ME/CFS)/Fibromyalgia/Long COVID journalist/blogger - ME/CFS/FM patient for 40 plus years
Jeff Wood @jeff_says_that
3K Followers 412 Following I solved my own case of post-viral ME/CFS. Then built a new model of ME/CFS that may also apply to Long COVID: The Mechanical Basis model.
Michelle Miyagi @mich... @MichelleMiyagi
1K Followers 6K Following LGBTQIA+ Empowering us to choose self-compassionate boundaries. LOVE 🌈✌🏽🤗 The Logical Heart Knows Best #LongCOVID #ME/CFS #MdDS (views my own)
me-cfs.bsky.social @yann_mecfs
924 Followers 911 Following I’m more active on BSKY now FCK musk FCK fascism
Meighan Stone @meighanstone
7K Followers 4K Following Human rights at home & abroad ♿ Executive Director @LCCampaign. Past: President @MalalaFund, Senior Fellow @CFR_org, Fellow @Kennedy_School, @WFP & @ONECampaign
Chris Wexler @ChrisWexler
1K Followers 2K Following Former CEO and Executive. Full time #LongCovid and #MECFS battler. Avoid Covid and slow down if you get infected. Don’t get Long Covid. Trust me!
Long COVID Campaign @LCCampaign
1K Followers 458 Following Nonpartisan & patient-focused, Long COVID Campaign (LCC) works for accelerated research, affordable treatment & expanded support in the U.S. & globally.You might like
