DecodeME the ME/CFS Study
@decodemestudy
The world's largest study ever into #MEcfs. #pwME
[email protected] - 0800 196 8664
#DecodeMEStudy #pwME #MillionsMissing
ID: 1193570150903140356
http://www.decodeME.org.uk 10-11-2019 16:44:56
1,1K Tweet
7,7K Followers
676 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
CW
@cwassermann
Television multi-tasker, expatriate Weegie. "Everything worthwhile is done with other people"
Barbara Molony-Oates 💙 She/Her
@barbaramolony
Public Involvement Manager / Radiotherapist / Physicist / Neurodivergent / INFJ / #2e / Runner / Teacher / Amateur Photographer / Mum & Dog Mum All views my own
Livi Elsmore
@liviels
Now on Bluesky: bsky.app/profile/liviel…. I post my own and others' views on housing, politics, legal and social justice issues. #MyalgicE advocate
Cyan (Sian)
@cyandippy
She/Her, Thornback, Music Lover, AFOL, Model, Disabled and Chronically ill. Now on bsky - @cyandippy.bsky.social
Fallaryn 🌻 zeroes 🦣 ca & 🟦
@fallaryn
Tree herder. Garden gnome. Orcaholic (@PrairieOrca). Born into a 356 ppm CO2 world, now 426 ppm. 💉 pericarditis & dysautonomia ko-fi.com/Fallaryn
Cherry Ferrier
@cherrymartin
No tweets to see here…Find me over on @Irr_Anatomist.
Thermo Fisher
@thermofisher
Thermo Fisher Scientific Inc. is the world leader in serving science. Our mission is to enable our customers to make the world healthier, cleaner and safer.
Jackie
@jackielittle
she/her #PwME #MECFS Homebound since 2017; my world is mostly online now. #CapitalismKills *Liberal ≠ Left* #DecolonizeYourMind #FreePalestine
Bhupesh K Prusty
@bhupeshprusty
A passionate molecular virologist who believe in patient oriented scientific research. Using viruses to understand human existence. Science is for society.
ME Association
@meassociation
We raise funds for medical research into ME/CFS and provide support, information & campaign for people in the UK. RPs do not necessarily mean endorsement.
Peanut
@mrsproctor2010
1st wave longhauler, 80% recovered. Spending my days quizzing. #LongCovid #MEcfs #CovidIsNotOver
MalkaG on Bsky 💙☁️🦋
@malka_g
Freelance communications specialist, editor, writer, advocate. Thoughts are my own, RTs ≠ endorsements.
Jane Pike 💜💙
@janebfc
❤ BFC. 💚 growing food/flowers. Has ME, osteoarthritis, fibromyalgia etc. Recovering political geek. Bit opinionated but *trying* to do it kindly ❤ Ig @janebfc
Edinburgh Medical School
@edinunimedicine
This account is no longer active. Follow us on our other channels here: linktr.ee/cmvm_edin
Ivonne
@denhartogivonne
“Pain is inevitable, suffering is optional.”
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)
Daniel Moore
@talmandaniel
Curious & exhausted peace seeker, co-host of @pempodcast23, photographer and blogger. PwME, sidelined social worker, grief dealer, joy peddler, SAFC fan, He/Him
Ani 🎄⛄️❄️
@anirobb
Just an ordinary person, nobody special, sound of mind (mostly) free will (not included in the pack from Chuck) "Be Kind To One Another & Animals!" 💖
Lisa Zett
@me_lisazett
#MECFS #Lyme #Democracy #🌈Ally PhD Political Science. I do care. she/her @[email protected] @lisazett.bsk.social
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.
jane pannell
@granejane
Open Medicine Foundation
@openmedf
OMF is fundraising to support open, collaborative research to find effective treatments and diagnostic markers for ME/CFS, Long COVID, and related diseases.
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✨
Leif
@surfleif
CFS fighter, former lawyer
Find me on Bluesky - Bye!
@foxglovetales
bsky.app/profile/wendya…
PrecisionLife - follow @precisionlife.bsky.social
@precisionlifeai
PrecisionLife is the clinical-stage precision medicine company for complex chronic diseases. Creating better, more personalized treatment options for patients.
Nigel T 🇺🇦🎗
@nigeltozer
Winding down here, still look occasionally. Find me here more: @thesimplifier.bsky.social
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...
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
Alaska
@worldvsreality
Life begins when you feel at home inside a body you can connect with. The disconnection is constant; not knowing who/what we are. Welcome to Alaska🪧♿️🩺💊☯️
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
Fatigo_ME
@fatigo_mecfs
#MECFS #Lyme recovery & creating awareness. Research, News, Views & Functional medicine approaches to healing #biohacking. Former Architectural designer on hold
Carol Monaghan
@cmonaghansnp
Zetta Genomics
@zettagenomics
SStyles
@stylessa191919
Loved running, cycling, swimming & living life to the full until #LymeDisease #MECFS 🕷💚#bethelightinthedarkness🕯 #schnauzerlover 🐾 #LoveNotHate ❤
ME/CFS News
@mecfsnews
News, interesting information and commentary on ME/CFS. Mostly inactive these days.
A Weekend in Vagus 🌈
@agildedeye
Breathe out. NB they/she. 'waleczna', apparently! 🌈🦄🌈🏳️⚧️🌙🥩⛩️ My main account is @chiller
Phil
@kilcommonphil
A single man in Cornwall living with Fibromyalgia, CFS and three beautiful cats. I live and I breathe for them. Silent echoes of a lonely sensitive misfit.
lyndseysendobattle
@lyndseysendoba1
defying medical science every day,walking medical journal,disability&MH advocate,retired athlete,socially awkward;in it for the chicken nuggets@thewhole115yards
Whitney Dafoe
@dafoewhitney
Severe ME/CFS patient and advocate. Sick since 2004, bedridden since 2013. Never. Giving. Up. ✊ Useful info for ME/CFS and Long Covid patients in bio link.
Jeffrey Lubell (EDS, ME/CFS, LongCOVID Research)
@jefflubell_c19
I am exploring treatments for my daughter's EDS & ME/CFS & implications for people with #EDS, #MECFS, and #LongCOVID. Not an MD or professional scientist.
UK Biocentre
@biocentre_uk
Not-for-profit organisation providing world-leading sample management & high-capacity bioprocessing services.
whisperkind
@seaindreams
ME, CCI, POTS, EDS, MCAS, ADHD, OCD, PTSD. Bedbound witch. she/they. Autistic. Real, relatively.
Long Covid Support 🌍
@long_covid
UK Charity • Support • Research • Advocacy • Education • Keeping people with #LongCovid at the centre. #CureLongCovid
Tweeterella
@leonie61359764
#MECFS nach Virusinfekt - Was ist ME/CFS? mecfs.de/was-ist-me-cfs/ - Hier um auf mangelnde Versorgung & fehlende Forschung aufmerksam zu machen.
𝒄𝒆𝒐̀ 𝒏𝒂 𝒎𝒂𝒓𝒂
@ceo_na_mara
Abby - Democracy must survive and thrive! 🇺🇦
@ms_readsalot
Kindness always 🧘♀️ yet schadenfraude 😉 40yrs of Severe CFS/ME & Fibro. I never give up.
DT #MECFS #freepalestine #abolishthemonarchy
@davro_t
#MECFS since 2018. Socialist, antifascist, nerd, gamer, horror/sci-fi/fantasy. Used to read & run a lot. Now a 'useless eater' #millionsmissing #autistic #audhd
Autoimmune Warrior
@vanmeteradrian
I am trying to spread awareness for chronic illness. Sjögren’s, fibro, chronic fatigue, lupus, endometriosis, IBS, migraines. You're not alone 🖤
Buckleberryferry🌱
@buckle_berry
Mostly hobbits and hobbit-adjacent things. 🌱 Some long covid and ME/CFS awareness, ANYONE can get ill and I wouldn't wish this illness on my worst enemy. 28
a_ryback
@aryback4
Clare Francis Research fellow at IGC Uni Edinburgh (Ponting Lab), funded by Action for ME.
Kenny_LC
@kenny_lcbio
🧠👩🔬 Long hauler (2020) w faith in🔬🧪 Pandemic Theme: Save, Save, Save M.E. (Queen 🎼) MCAS, SFN, endoth damage + hyperact platelets. Here to 💬 on Sx & Tx
Chronic Diaries
@rs_chronicdiary
Just me trying to navigate multiple chronic illnesses and try to survive. ME/CFS, POTS, ASD, Chronic UTI and more
Dr Claire Taylor
@drclairetaylor
Doctor|Special interest in Long Covid,POTS,ME/CFS&MCAS| neuroscientist🧠Long Covid kids champion|long Covid clinic🏴Views my own
anarosah
@anarosahj
#EncefalomielitisMiálgica
Lucy 🐾
@wildlifelucy
Nature lover🐦, peace seeker, gentle soul. From engineer to psychology graduate. Now more husk than human🐌: Housebound Pw #MECFS #PoTS #CPTSD #Menieres
Bea is Chronically Persisting✨
@be_kinderr
Chronic Illness Researcher. Science of #MECFS #LongCovid #POTS #EDS #MCAS CCI SFN Lyme etc & How They Connect🕵🏻♀️Scientist/Advocate [email protected]
Amy Boylan
@amyboylanwrites
Freelance #copywriting rock doc. Sticky #websitecopy, long #content & expert #articles. Life on ⏸ Household of pre-vax #LongCovid #PoTS #MCAS (she/her)
JoeyS
@joe1981777
- Cracking the code of ME/CFS - Crushin poker as a hobby
p.j.
@petejm1958
Socialist. Sociologist. From the plough... to the stars.
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.