Mums done a good job! We hope you enjoy and take a read - Caroline ♥️
19.02.2025 18:23 — 👍 2 🔁 1 💬 0 📌 0
I know I am not completely alone in thinking #ME research should be designed to *include* very severe ME and *exclude* fatigue as the only criterion for participation. Am I the only one seeking to establish ethical approval highlight to ensure every study is designed to *avoid symptom exacerbation*.
12.01.2025 10:11 — 👍 31 🔁 4 💬 2 📌 0
Long COVID/ME interested lung doctor | Campaigner | Independent SAGE | Co-Founder South Asian Heritage Month | Diversity Power List 24/25
Website: https://thelongcovidclinic.co.uk
Linktree: https://linktr.ee/binitakane
Co-founder #ThereForME | Calling for an NHS that’s there for ME & Long Covid | www.thereforme.uk
Independent researcher & policy analyst | Migration & displacement | Projects with @odi-global.bsky.social | www.linkedin.com/in/karen-hargrave
Microbial ecologist/carer. NERC IRF and MRF Emerging Leaders Fellow at the University of Exeter in Penryn. I like warming up bacteria, open & reproducible science, making focaccia, and exercise.
Disabled by very Severe Post-COVID ME/CFS. Not always able to use phone. Bedridden. Unable to Speak.
I care.
Ⓐ💚, (FR/DE/EN, but posts in english)
Clinging onto the ledge above the abyss.
Calling for an NHS that's there for Long Covid & Myalgic Encephalomyelitis (ME) | www.thereforme.uk
Senior Fellow in Public Health and Journalism, Center for Global Public Health at the University of California, Berkeley. I blog at Virology Blog (virology.ws). My academic position is largely funded by donations from patients. davetuller@berkeley.edu
Severe ME patient currently on a 10% battery, the gas goes out more than I do. I also compile ME/CFS Awareness videos.
https://linktr.ee/abrokenbattery
Disease genomics & molecular mechanisms; ME/cfs: http://decodeme.org.uk, SequenceME @ Edinburgh University. Views - my own. He/him.
https://www.dialogues-mecfs.co.uk Website with videos created by Natalie Boulton & Josh Biggs with a Wellcome Public Engagement Fund Award. Professionals and patients explain key aspects of #ME/CFS and a longer film explores the wider context and history.
I'll "tweet" here about the things I don't like if the other app goes down
The ME Advocacy Project is a grassroots initiative founded by individuals living with post-infectious illnesses Myalgic Encephalomyelitis and/or Long COVID.
Unceded Canada
Occupational therapist, advocate, and caregiver dedicated to supporting individuals with chronic complex conditions. Offering therapeutic care for those affected by #MECFS, #LongCOVID, #POTS, #EDS, and related conditions.
A neurologist, M.D., mother of a 17-year-old with #Lupus #NeuroSjogrens #AutoimmuneEncephalopathy triggered by SARS-CoV-2 ⚠️ Occasionally blocks energy drains.
📍Seattle, WA
Physician specializing in ME/CFS, Long COVID, & associated complex disease | Assistant Professor of Medicine | She/Her/Hers | https://t.co/TkYm2MXvir
Former doc filmmaker/cinematographer/teacher, current full-time sick person, occasional poet
Long COVID, mild, since Apr 2022
ME / Long COVID diagnosed May 2024
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
Billboard campaign/fundraiser here
https://www.notrecovereduk.org
