The global nonprofit organization dedicated to change and progress in the world of Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD) ehlers-danlos.com
📸 Photographer | capturing life's candid moments with my camera 📸
🌍 https://rupertrivett.photoshelter.com 🌍
#RealStreetPhotography #Photojournalism|
Skilled in unobtrusive, authentic #storytelling
📣NEW SUBSTACK 📔
👇📸👇📸👇📸👇📸
https://rupephoto.substack.com/
Science integrity consultant and crowdfunded volunteer, PhD.
Ex-Stanford University. Maddox Prize/Einstein F Award winner
NL/USA/SFO.
#ImageForensics
@MicrobiomDigest on X.
Blog: ScienceIntegrityDigest.com
Support me: https://www.patreon.com/elisabethbik
Counter Disinformation Project, Former NEU and ATL union executive
Freelance journalist & researcher @bylinetimes @whowhatwhy
Educator
Counterdisinformationproject.substack.com
💙UK Registered Charity: 1205685
💙Long COVID doesn’t stop the care - neither do we.
💙Join our 2025 Campaign: #SafeAir4All
PharmD, MS in Biophysics, PhD in Biochemistry
I like taking photos of weird things inside the brain 🔬
Cure #LongCovid
Long Covid Advisory Team: https://whn.global/long-covid-advisor.
daniellebeckman.com
ME/CFS archive. For education, not profit. Researched since 2011 by @continuitytweets.bsky.social & @ciaranj_farrell. Reposts not necessarily endorsements. No art, emoji etc.
https://rfh1955.blogspot.com/
Severe ME/CFS patient and advocate. Writer, photographer, filmmaker. artist, activist, creative. Bedridden since 2013 sick since 2004. Never. Giving. Up. ✊
Postdoctoral scientist studying the neurobiology of #longCOVID in the Iwasaki lab @ Yale. Patient, scientist, advocate. | ♿🏳️🌈 | she/her
My long COVID research newsletter: lcbreakdown.substack.com
🇨🇦Just a chronically ill East Coast girl with a sailor mouth. #NB
History/Science/Politics/Gaming/Movies/ #Leafs Hockey/Creator/Cat Rescuer
Leukaemia cancer survivor!
Anti-fascist/Anti-disinfo activist.
Battling #LongCovid since March 2022
#MCAS
#POTS
♑
Visual Artist and Writer | Posts from the sick bed #ME #pwME #LongCOVID #ZeroCOVID #Crip #ChronicIllness #DisabilityJustice #ContemporaryArt #ConcretePoetry #PostdigitalPoetry #PoeticWeb
n=50 @remissionbiome.bsky.social
Poetry @diktgymnasiet.bsky.social
immunocompromised • made & kept sick by the state • 🇵🇸🇵🇸🇵🇸
Psychiatrist | Life on hold since Oct. '21 due to long Covid | LC foundation NL | Carpe diem sed non inpensa crastina | Tweets are my own | No medical advice
Neurobiologist.Oligodendrocytes/myelin/remyelination/energy metabolism.
Lab @ Unity Health Toronto/University of Toronto & UK Dementia Research Institute/ University of Edinburgh studying myelin health across the lifespan.
John David Eaton Chair of MS Research/
MRC Senior Fellow
www.mironlab.ca
Nephrology & Internal Medicine. Immunothrombosis incl DIC. ISTH Member. No Conflicts of Interest. Views my own etc
A new way of living
https://linktr.ee/MidlandSound
Medical educator, MD-patient.
I debunk Sjögrens myths.
www.sjogrensadvocate.com - I show people with Sjogren's how to use credible resources to advocate for timely diagnosis and comprehensive care for this complex, multisystem disease.
Huisarts n.p. en verzekeringsarts n.p. (Nominated for the 2016 John Maddox Science Prize). Truth about #MEcfs #PACEtrial sounds like Hate to those who Hate truth.
CBT + GET for MEcfs = quackery
https://www.researchgate.net/profile/Mark-Vink-2
#LongCovidKids #LongCovid #MECFSKids #MECFS
#MillionsMissing #CureMECFS
#TeamVorsicht #CovidIsnotver #CleanAir #MaskUp #MassDisabelingEvent
#DieMaskeBleibtAuf
und linksgrünversifft
See gregory.levonian.net for more information.
Sic transit gloria mundi.
La promotion intégrée de l' #ActivitéPhysique favorable à la #Santé : de la santé des individus à la #SantéPublique. #Sédentarité; #Education; #Evidencebased; #APA
CovidLong, EM, Réadaptation, Malaise/exacerbation de symptômes post-effort MPE PEM, Pacing
Tracking the Covid Pandemic and other health news. Opinions are my own. My YouTube channel: http://tinyurl.com/9cd2zsfp
My website: datareport.info
Graphic & web designer, mainly using this account for illness fieldnotes.
♿ Chronically ill & disabled with ME/CFS, MCAS, hEDS, Psoriasis, Endometriosis/Adenomyosis, a̶n̶d̶ l̶i̶k̶e̶l̶y̶ s̶o̶m̶e̶ r̶a̶m̶p̶a̶n̶t̶ u̶n̶d̶i̶a̶g̶n̶o̶s̶e̶d̶ A̶D̶H̶D̶ and ADHD
Je poste principalement en anglais !
I’m a qualified Dr /Psychiatrist, life is currently on hold due to Long Covid complicated by Covid vaccine injury. I used to be a travel junkie, gym goer, party lover.. trying to get my life back!
I moved to Spain to be with my parents whilst sick.
Unofficial account exploring the intersection of biology, molecules, science, AI and protein folding with AlphaFold.
CrunchME is a patient-led organisation, creating the evidence and insight base needed to crunch infection-associated chronic conditions (IACCs), including #MECFS and #LongCovid.
📍 https://crunchme.org/
The Bateman Horne Center is a medical center of excellence for people with ME/CFS, Long COVID, fibromyalgia, post-viral illness, and comorbid conditions.
OMF is fundraising to support open, collaborative research to find effective treatments and a cure for ME/CFS, Long COVID, and related diseases.
Professor of Surgery at Wayne State University dedicated to promoting science-based medicine and deconstructing quackery. Managing Editor, Science-Based Medicine blog (sciencebasedmedicine.org). X/Twitter & Threads: @gorskon. (He/him)
A group of physiotherapists with a special interest in Myalgic Encephalomyelitis (ME) with the aim to improve physiotherapy management for people with ME
Find out more at physiosforme.com
Nonprofit advancing discovery through rapid, free sharing of scientific communications. New home of bioRxiv and medRxiv.
Pharmacist interested in Long COVID and ME/CFS research
Pro-mask, pro-clean air!
Substack: https://pharmd.substack.com/
Doctor in psychology, proud participant of #RemissionBiome first cohort, #EDSh #MCAS #ME/CFS. The pandemic is not over. #CleanAir #MaskUp #StandWithUkraine #StopGenocideInGaza
Neurologist and more. https://www.atria.org/doctors/dr-ilene-ruhoy/
Focused on innate immune mechanisms governing pathogenesis of disease and on NK-cell based therapies for disease. Opinions expressed are Dr. Waggoner's alone and not on behalf of lab staff or employer.
Physician/Internist focused on complex illness including Long Covid, ME/CFS, dysautonomia/POTS, MCAS, connective tissue disorder, and of course SIBO/Leaky Gut.
And sadly, the ongoing coup.
Ella/she/her. I write, I read, I draw plants. Chronically ill en la Ciudad de México. #ME #MECFS #POTS #LongCovid
Research Scientist who prefers facts to lies. Focus on Long COVID. Free book: http://osf.io/pnxcs/.
Riverside, CA
Equine History Collective
Renegade Research
https://katboniface.wordpress.com/the-glutamate-boss/
Here for research and info on #Migraines #MECFS #LongCovid #MCAS #MCS #ChronicPain #MetabolicHealth #Neuroscience #Psychology #MedicalGaslighting, posts German & English, hobby songwriter
https://renesugar.substack.com/
Retired person, was in tech industry for 37 years
Self and family got multiple chemical sensitivity from a sick house incident in the mid 1990s
Heretic, with a heretical research hypothesis on the nature of MCS and a dozen other complex chronic illnesses
Blind activist, Mama, accessibility professional and Londoner. Guided by the Diva Retriever. Sharing my blurry world view
Asst. Prof. in Machine Learning at UofT. #LongCOVID patient.
https://www.cs.toronto.edu/~cmaddis/
Retired 🪷 Grandmother • 3 chronic illnesses since early 2020 🥄 #longCOVID #ESKD #IgGdeficiency 💙 Volunteer at @renegaderes 🥩 animal-based keto ♿️ amputee
Pets, nature, physics, health, sewing, crafts, ME/CFS/OI/LC science & symptoms, medicinal metaphors, gratefulness practice. Volunteer for Renegade Research including R50, NoVA ME/CFS, OI & Long Covid Support Group, MEAction NC.
501(c)3 transforming how #LongCovid, #ME/CFS & Lyme+ are studied, diagnosed, and treated. Leading the #LongCovid Research Consortium.
Division Chief, Nephrology UNMHSC
(im)personal views & account #zerokale
Firm believer : caveat emptor & stupidity is immoral
Random thoughts about #nephrology #stats #bioinformatics #perl #HPC #nanopore #RNAseq #covid19 #amateurcoding
#ButlerianJihad
Patient/Caregiver-led nonprofit 501c3 focused on #MECFS and #LongCovid • https://Renegade-Research.org 💙 Runs project @remissionbiome.bsky.social • Donate now ▶️ https://tinyurl.com/44azdsxm
Health Equity & Translational health researcher | Improving healthcare services & experiences for marginalized | Part-time research associate | Renegade Research volunteer
Tampa, FL
😷🌈☮️📊📚🫂🩼♿️🗣️
#Disabled #LongCovid #PostVax #MECFS #POTS #hEDS #Lyme #AuDHD
The International Cytokine & Interferon Society (ICIS ), is the premier organization promoting the field of cytokine & interferon biology across many different research disciplines, including cytokine biomarkers & cytokine therapeutics.
your least favorite autists favorite autist // disabled as fuck with Extremely Severe ME, POTS & feral MCAS // pronouns are they/them ✡️ 🇲🇽🏳️🌈
Writing about intersection between climate adaptation and finance. Substack https://susanpcrawford.substack.com
Author of Charleston: Race, Water, and the Storms to Come. Learning all the time.
Extropian sci/tech geek. Improving moderate #MEcfs, #non24-hour sleep. #ADHD-PI, #AuDHD, #dyslexic. "ZeroGravitas" in PC gaming. He/him. 42. Please correct me. https://linktr.ee/ZeroGravitas
Non nobis solum nati sumus. Husband. Dad x3. Upstreamist. Pracademic. Oregifornian. Storyteller. It’ll be ok in the end. If it’s not ok then it ain’t the end. Alphabet soup after my name: DPT PhD MPH OCS. https://www.linkedin.com/in/todd-davenport-2795ba10
Published an ME/CFS Hypothesis of Noradrenergic Neuron Dysfunction and Phosphatidylcholine Deficiency - https://www.preprints.org/manuscript/202409.1467/v2
I am researching treatments for my daughter, who has hEDS, ME/CFS and other conditions, with implications for #EDS, #MECFS and #LongCOVID. I am a researcher, but not an MD.
Scientific Director, #MEAction
Stanford Med
Université de Montréal
TIME100 Health
#ME, #EDS, #POTS, #LongCOVID
Views my own
Reformed journo/editor, now working in health comms. Fighter of injustice in all its forms. Advocate for better research & support for ppl w uninvited friends POTS, ME/CFS, MCAS, LC, EDS, SjD, AnkSp plus other misunderstood AI conditions.
Scientist, mom, & dog mom. She/they. Trans rights are human rights. Long covid survivor. Pissed about the climate crisis. Tell your dog I said hi
Sustainability science studies on hold because of POTS + Long covid / suspected ME. Previously interesting, now mostly into resting.
Here to connect with other sick people and for science stuff.
Body malfunctioning since 1998 #MECFS #PoTS #MCAS #hypermobility & other delights.
I'm a #LongCovid #LongCovidKids and #Pans #Pandas ally. Here to make connections old & new.
#CovidIsNotOver #CleanAirForAll #MasksInHealthcare #GreatestMEdicalScandal
MECFS from the long before times but not diagnosed for 23 years…LC since 2020 - interested in advancing patient led research (Renegade Research & Remission Biome) & all avenues that lead to effective treatments for everyone. She/her. Love is my language. 💖
PhD MICROBIOLOGIST
AMR, Biofilms, Phage Therapy, Drug Design and some other similar topics 🤫🔜
@remissionbiome.bsky.social team
@renegaderesearch.bsky.social volunteer
DEFEND SCIENCE, RESIST IGNORANCE 🚫
#SonKale06
Ankara
Research, algorithmic art & music, machine learning, anti-bias in AI data. #LongCovid research & advocacy @patientled.bsky.social.
Zoologist & veterinary research. She/her.
22yrs with #MEcfs Pro-vax but vaccine injured. Life on pause due to moderate/severe ME/CFS ♿️
Patient Expert in ME/CFS, POTS and syndromic Long Covid.
Please excuse my typos.
Mom, humanist, anti-extractive. I do research - biomedical sciences through the lens of humanities & society with a focus on praxis. Settler on Turtle Island.
Better Society 🔄Better Sleep
Current focus MECFS & Long COVID research/care/community
A non-profit social enterprise dedicated to people with Long Covid + ME. Shifting the paradigm one step at a time...
💙📚Home to the #pedanticzebra book club.
https://www.longcovidadvoc.com/
🛍️ https://longcovidadvoc.shop/
Founder - Renegade Research
#MECFS #LongCovid
Mike Y, 50, San Diego USA. Interests: Long Covid, ME/CFS, #RemissionBiome
https://linktr.ee/longhaulerbear
Long Covid, MECFS, ADHD, etc.
Patient-led research is my jam.
A bit obsessed with GIP.
ME/CFS patient advocate and caregiver. Mom to Whitney. Spouse of Ron Davis. Child Psychologist.
Proud Mama & Wife | #Disabled ♿️ | #WomxnsHealth Nurse Practitioner & Clinical Scientist | Prev MIT, Stanford | Catalyst | Connector | Healing | #JusticeAccomplice | She/Her
Author of Through the Shadowlands: A Science Writer's Odyssey into an Illness Science Doesn't Understand. I mostly write about complex chronic illness and math. Bylines in NYT, WashPost, Discover, Wired, Slate, Stat News, Science News, lots more. She/her.
CEO | Renegade Research | Project Director of Remission Biome
NBC-HWC, AIP-C
@remissionbiome.bsky.social
Project run by #RenegadeResearch @renegaderesearch.bsky.social a non-profit 501c3 decentralized org pioneering patient/caregiver led research focused on #MECFS & #LongCovid • Renegade-Research.org • RemissionBiome.org 💙 Donate now ▶️ tinyurl.com/44azdsxm
