Phoenix Rising
@aboutmecfs
A community for people with Myalgic Encephalomyelitis & related conditions. Fibromyalgia, Long Covid, Dysautonomia, EDS & MCAS all welcome!
ID: 21976750
https://PhoenixRising.me 26-02-2009 05:13:33
3,3K Tweet
6,6K Followers
3,3K Following
Tom Kindlon
@tomkindlon
With ME 36 years (30 yrs severe). 95% of posts on #MEcfs/#LongCovid/#chronicillness. 26 publications in peer-reviewed journals. @IrishMECFSAssoc trustee 28 yrs
Fibromyalgia | Functional Medicine | Brain Health
@moshpitqueen
Board Certified Functional Medicine Brain Health Coach | Fibromyalgia Advocate @teamfibro | Nursing Student | Biohacker
Cort Johnson
@cortjohnson
Founder of Health Rising /Phoenix Rising - Chronic Fatigue Syndrome (ME/CFS)/Fibromyalgia/Long COVID journalist/blogger - ME/CFS/FM patient for 40 plus years
@Riemerville
@riemerville
May your odds be ever in your favor! #LongCovid #POTS #ME #CleanAirHealthySchools
T@Sunset
@teiasunset
#LongCovid 2003/2020 / Cancer survivor. 🎵🎶Humming music, writing under trees watching sunsets.🏝️😻
Dysautonomia Intl.
@dysautonomia
Dysautonomia International is a 501(c)(3) non-profit that raises funds for research and promotes awareness of disorders of the autonomic nervous system.
Massimiliano
@snipperspace
53y/man/Nurse and Osteopath/#MECFS (Long Mumps, The only one in the world) from 13/08/2021.🇮🇹 Italy
Vikram Jha
@invinciblejha
Founder & CEO @puchodigihealth. Working towards patient Centered #longcovid research for diagnostic & treatment. #AIAgents #AI #GenerativeAI #LLM
Kent Boogaart
@kent_boogaart
Software dev, author, Dad, husband, atheist. All my tweets are gluten-free. #flutter #dart #fsharp #csharp
Lia
@ergebnisoffen
Life on Pause || LongCovid und ME
Lila Guterman
@lilaguterman
Was Deputy News Editor, @NewsfromScience . Now #LongCovid patient (May 2022). Prev jobs @ScienceNews, @cenmag, @chronicle. she/her. @lguterman.bsky.social
Anil van der Zee ©
@anilvanderzee
Former professional ballet dancer | Bed/sofa-bound M.E. patient | Using Twitter to raise awareness for #MyalgicE | #IACC #art2cureME #pwme #millionsmissing
Dan Wyke 🦠➡️🧠🔥
@dan_wyke
M.E. inactivist, person-centred counsellor (see link), recovering poet (Rack & Waterloo Press)
Lottie Fyfe
@lottiefyfe
Freelance editor, emerging translator, aspiring writer. She/her. 'Admirably punctilious' - J. M. Coetzee
Aaron Teasdale
@aaronteasdale
Writer & photographer specializing in adventure, natural history, & conservation. Two-time Travel Writer of the Year.
GeoCK
@geoeduone
MSc | AD | ICL, UCL, UOB alum | Geoscientist, cyclist, adventurer, athlete, dad | Sidelined after a “mild” Covid infection, Dec 2021 | #LongCovid #FBLC #Climate
WAMES
@wamesmecfs
WAMES acts as a voice for people with ME/CFS, PVFS their carers, families and professionals. Website: wames.org.uk Facebook and Instagram: WAMESMECFS
davidtuller
@davidtuller1
Senior Fellow in Public Health and Journalism, Center for Global Public Health, UC Berkeley. My academic position is largely funded by donations from patients.
Lisa McCorkell
@lisaamccorkell
on twitter/x hiatus. formerly: @patientled | MPP | she/her | natures 10 2022
Katy B
@katybruce108
Myalgic Encephalomyelitis ME + POTS 38 years Donor to the @mecfsbiobank for 10 years & @DecodeMEstudy Please watch dialogues-mecfs.co.uk/videos/ #pwME
Lizzy H
@hopefullizzy
30y/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✨
RarasNoInvisibles
@noinvisibles
Hablamos de salud, enfermedades raras, inclusion social y biomedicina. Escribe @Sombradoble Mas Información: [email protected]
Lindsay Baran
@lindsay_baran
Disability & healthcare activist/ researcher/ policy nerd on indefinite pause. Chronically ill & hoh 🦓 lindsaybaran.bsky.social
OhTWIST.bsky.social now too
@h2ohtwist
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 diagnosed.
Wading through treacle
@kimisgubbed
Advocate & sharer of bio research for INFECTION ASSOCIATED CHRONIC DISEASES inc MECFS, Long COVID, MCAS, Dysautonomia, Vaccine injuries, FMS, Sjogrens & Lyme 🔬
#MEAction Network
@meactnet
A global network fighting for equality for Myalgic Encephalomyelitis. #MEAction #MillionsMissing linktr.ee/meactnet
Janet Dafoe
@janetdafoe
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...
All Things Fibromyalgia and Lupus
@fibrofacts
Fibromyalgia awareness is what we do! And we cover all autoimmune conditions such as Lupus, pain, and fatigue! #fibro #fatigue #lupus #pain Share your story!
Naomi Harvey PhD #WearAMask
@naomi_d_harvey
Zoologist. She/her. 23yrs with ME/CFS. Pro-vax but vaccine injured. Life on pause (views my own - unemployed) ♿️ naomidharvey.bsky.social
Dr Asad Khan FRCP FRACP 🇵🇸🇳🇿🇮🇳🇬🇧#pwLC
@doctorasadkhan
Lung Dr on pause since Nov 20 #LongCovid #POTS #MCAS #HSD #pwME #Aotearoa Views my own; Retweets≠endorsements #freepalestine #TeamClots ZIONISTS WILL BE BLOCKED
Brian Fog
@useless_priest
ME, when triggered by SARS-CoV-2, is a subset of Long COVID | LC Apr 2022 | #MECFS #PostVac ally | 🏳️🌈 | 🇮🇪 | No miners
Siebe.
@patientpersists
🎯 Goal: curing SARS-CoV-2 persistence #LongCovid | No formal biomed education | MA Philosophy | MSc Business | ❤️ nuance | effective altruism
Sebastian D.
@sebastiangd96
Vom erfüllten Leben zur Bettlägerigkeit - und wieder ein Stück zurück. #mecfs #longcovid #postvac. BBA@griffith gold coast, BA@hsaa, MSc@fau. de/en/fr
Natalia
@nataliahodgins
Disabled writer with words in @Refinery29AU, @ABCNews, @PublicHerald | Activist | Feminist | MECFS | Follow on IG - same handle
Billy Hanlon
@bhanlon15
ME/CFS | Long COVID | IACC
Jo
@cfs_jo
CFS(!) & POTS diagnosis, ME symptoms - trying to accept. Still me. Sense of humour intact. Proud “Anti-Recovery Activist” Mostly on justjo@bskysocial
Eli Vega | Cuidar con Ciencia
@cuidarciencia
🌍 Trabajadora social sanitaria. Formadora en impacto sostenido del Covid. Cuerpo, ciencia y cuidados como derechos. #COVIDnoAcabó #CuidarConCiencia 💬 En/Es
MastCellChat
@mastcellchat
Took a decade to get a diagnosis. Raising awareness on Mast Cell Activation Syndrome, symptoms, protocol & research to improve quality of life.
Natalie Trosh 🧠
@natalie_trosh
Women in #Data | Currently managing #LongCovid | Big on #HealthcareImprovement | Experience of Neurology & Psychiatry | #DisabledbyCovid #FBLC | My views.
Martin
@pausedme
#MECFS⎮#Lawyer by profession | #Musician by passion | PERSONAL ACCOUNT |
Judith Taffur
@judithtaffur
Mujer creyente amo a mi familia
Rufino
@rufinocabrera6
Epidemiólogo, interesado en las enfermedades infecciosas desatendidas (que no están en la agenda sanitaria). Comentarios a título personal
Katie
@katie_andme
19 year old bedridden for over 3 years with severe M.E. ill since 2017 #ME #MECFS #severeME #verysevereME
Miguel Guerrero Díaz
@upii_ciceron
🌐Psicólogo Clínico. Grupo Ejecutivo Motor Plan de Acción Prevención #Suicidio @sanidadgob 🎗 Programa Andaluz Prevención del #Suicidio @saludand
AIREyVIDA aquí no contamos casos, los prevenimos
@aireyvida2021
🌎 educando con un podcast en vivo y en directo... ¡y en español! #LAS7CAPAS & #LONGCOVID 🎙️ Científicos, Pacientes y vuestro anfitrión @JaimeAcevedoMD.
Sydney 😷
@syd_klug
anesthesiology PGY1 | opinions=mine|
Steph 💜 Award winning mental health advocate
@stephwrites40
Award winning mental health advocate, writer & Illustrator. Wheelchair user, BDP, EDS & Post Covid. Indoors 2+years. Mentally unstable. #creativebizhour winner!
LongCovidPharmD
@organichemusic
Doctor of Pharmacy. Long Covid, EBV & ME/CFS research. Here to share & learn. Tweets not medical advice. PharmD.substack.com ko-fi.com/LCpharmD
Carmen Scheibenbogen
@c_scheibenbogen
Immunologist and ME/CFS researcher MD @ChariteBerlin
Ally
@allykeylime
🇺🇸 FAR UVC 222nm, masks for doctor/dentist/hospitals/public transpo/pharmacies/grocery. Organs matter. CFS. MCS. Protect Animals. Ⓥ
ChronicallyillJade
@jadechronicilly
A chronically ill 25yr old with ME/CFS. All tweets/thoughts are my own.
Long-Covid Advocacy 🇮🇪
@longcovidire
Advocating for #longcovid treatment. Need help from journalists, researchers and politicians to create awareness to #treatlongcovid #FBLC
WeCare4CleanAir ❤️🌐 #ControlCovid
@anon_ronin
#WeCare4CleanAir ❤️🌐 #CleanAir Movement World Wide. @TheWHN. #ControlCovid Constitutional Complaint for Clean Air. The Public Sphere Project. @Die_Gruenen
Movilización Persistente #pwLC + pwME
@covidvictimas
Pacientes + familias #EncefalomielitisMiálgica + #CovidPersistente unidos y movilizados para denunciar el abandono
Long Covid & ME/CFS Weekly
@longcovidweekly
OG March 2020 longhauler focused on Weekly Newsletter dedicated to Long Covid & ME/CFS news. longcovidweekly.substack.com author: @biotechbuzznews
Stephanie Grach MD MS
@grachstephanie
@MayoClinicGIM Physician specializing in ME/CFS, Long COVID, & associated complex disease | Assistant Professor of Medicine | She/Her/Hers
Long Covid Advocacy Ireland
@lcaireland
The voice for Long Covid in Ireland. An advocacy group comprised of Long Covid patients fighting for awareness of LC & adequate services in Ire for all patients
Gunnar Gottschalk
@ggottschalkphd
PI and CEO of Simmaron Research Inc. @redefiningMECFS
Mark
@longcovidman
On pause: management consultant, tech founder & powerlifter. Follow for smart answers to long cov*d as I find them
Workwell Health
@4workwellhealth
We stand for better quality of life for people living with PEM/PESE through high quality health provider education and virtual clinical services.
ME/CFS Research Foundation
@mecfsresearch
Für mehr ME/CFS Forschung! We promote & finance #MECFS research! 🍋 LemonChallengeMECFS.org ME/CFS: Myalgic Encephalomyelitis / Chronic Fatigue Syndrome
Verónica Athié BSc, MSc, PhD.
@veronicaathie
QFB @quimica_unam, Inmunóloga @TheCrick. #VacunemosConEvidencia. @ConCiencia_ECAI: Investigación, sensibilización, prevención #LongCOVID #MECFS #CalidadDelAire
Carole Bruce
@carolebruce17
💙Art, Nature, Books, Some Music. Severe ME 32 years. Daughter severe 38 years. Furious about treatment of ME. bsky.app/profile/cabruc…
Adam
@abrokenbattery
Severe ME patient currently on a 10% battery, the gas goes out more than I do. I also compile ME/CFS Awareness videos.
Dr Katharine Seton
@katharine_seton
ME researcher. Chair of the European ME Research Group for early career researchers (@YoungEmerg). All views are my own.
Cynthia Adinig
@cynthiaadinig
Patient Advocate & Equity Policy Advisor Co-founder BIPOC Equity Agency #LongCovid #MECFS #MCAS #EDS #POTS
Dr. Daniel Loy
@loy_daniel_de
Ehemann, Jurist. #MECFS. Team #SIGNforMECFS. Team #GOfundMECFS. One of the #MillionsMissing.
🕸️Dr.T, PhD
@chydorina
PhD in Biology (not an MD). Cognitive health and chronic disease recovery.
ENFA
@enfa2008
The European Network of Fibromyalgia Associations (ENFA) champion increased awareness, research and support for people living with fibromyalgia across Europe.