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DecodeMEstudy's profile picture. The world's largest study ever into #MEcfs. #pwME #DecodeMEStudy #pwME #MillionsMissing

DecodeME the ME/CFS Study

@DecodeMEstudy

The world's largest study ever into #MEcfs. #pwME #DecodeMEStudy #pwME #MillionsMissing

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DecodeME the ME/CFS Study
 @DecodeMEstudy
Aug 6

Our initial DNA results! DecodeME have discovered that people with an ME/CFS diagnosis have significant genetic differences compared to the general population. Summary of our results: shorturl.at/pgsjk Check out our full preprint paper: shorturl.at/VwN3s

DecodeMEstudy's tweet image. Our initial DNA results! DecodeME have discovered that people with an ME/CFS diagnosis have significant genetic differences compared to the general population. Summary of our results: shorturl.at/pgsjk Check out our full preprint paper: shorturl.at/VwN3s
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DecodeME the ME/CFS Study
 @DecodeMEstudy
Oct 21

📢Action for ME has launched The Big Survey We’re sharing this from DecodeME as we think many of you may be interested in taking part - but please note, this survey is separate from DecodeME’s research. For more information, FAQs, and to take part: tinyurl.com/yzfb8uhw

DecodeMEstudy's tweet image. 📢Action for ME has launched The Big Survey We’re sharing this from DecodeME as we think many of you may be interested in taking part - but please note, this survey is separate from DecodeME’s research. For more information, FAQs, and to take part: tinyurl.com/yzfb8uhw
DecodeMEstudy's tweet image. 📢Action for ME has launched The Big Survey We’re sharing this from DecodeME as we think many of you may be interested in taking part - but please note, this survey is separate from DecodeME’s research. For more information, FAQs, and to take part: tinyurl.com/yzfb8uhw
DecodeMEstudy's tweet image. 📢Action for ME has launched The Big Survey We’re sharing this from DecodeME as we think many of you may be interested in taking part - but please note, this survey is separate from DecodeME’s research. For more information, FAQs, and to take part: tinyurl.com/yzfb8uhw
DecodeMEstudy's tweet image. 📢Action for ME has launched The Big Survey We’re sharing this from DecodeME as we think many of you may be interested in taking part - but please note, this survey is separate from DecodeME’s research. For more information, FAQs, and to take part: tinyurl.com/yzfb8uhw
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DecodeME the ME/CFS Study reposted
MEAssociation's profile picture.
ME Association
@MEAssociation
Aug 29

The ME Association are pleased to announce that we have awarded .@DecodeMEstudy the Howes-Goudsmit Award 2025 for their extensive work and commitment to their genome-wide association study. Find out more: meassociation.org.uk/ir3e #MECFS #pwME #SevereME #MyalgicE #DecodeME…

MEAssociation's tweet card. The ME Association are pleased to announce that we have […]
The ME Association awards Decode ME the Howes Goudsmit Award 2025 - The ME Association
Source: meassociation.org.uk
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DecodeME the ME/CFS Study
 @DecodeMEstudy
Aug 29

As we move into the next phase of our study, we would like to say a huge thank you. Going forwards, we will no longer be able to respond to emails & check social media. Stay up to date through our email list - sign up at the bottom of our new homepage: shorturl.at/46QSk

DecodeMEstudy's tweet image. As we move into the next phase of our study, we would like to say a huge thank you. Going forwards, we will no longer be able to respond to emails & check social media. Stay up to date through our email list - sign up at the bottom of our new homepage: shorturl.at/46QSk
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DecodeME the ME/CFS Study
 @DecodeMEstudy
Aug 29

If you took part in DecodeME, your data will continue to be held securely by Edinburgh Uni. To update your details/ consent, please email [email protected]. For general info or support, please contact Action for ME at [email protected] or 0117 927 9551.

DecodeMEstudy's tweet image. If you took part in DecodeME, your data will continue to be held securely by Edinburgh Uni. To update your details/ consent, please email decodeme@ed.ac.uk. For general info or support, please contact Action for ME at infosupport@actionforme.org.uk or 0117 927 9551.
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DecodeME the ME/CFS Study
 @DecodeMEstudy
Aug 28

We shared our initial DNA results over the past few weeks to a wonderful response & widespread media coverage. Now, we are moving into the next phase of the study & have updates to share. Check out our blog post to find out what’s next for DecodeME: shorturl.at/Y1hXm

DecodeMEstudy's tweet image. We shared our initial DNA results over the past few weeks to a wonderful response & widespread media coverage. Now, we are moving into the next phase of the study & have updates to share. Check out our blog post to find out what’s next for DecodeME: shorturl.at/Y1hXm
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DecodeME the ME/CFS Study
 @DecodeMEstudy
Aug 28

Interested in supporting future ME/CFS research? @EdinburghUni & @actionforme are expanding on DecodeME’s research through projects like SequenceME & Long Covid, which will use DecodeME data to study the entire genome. Help support future ME/CFS research: shorturl.at/rRFD9

DecodeMEstudy's tweet image. Interested in supporting future ME/CFS research? @EdinburghUni & @actionforme are expanding on DecodeME’s research through projects like SequenceME & Long Covid, which will use DecodeME data to study the entire genome. Help support future ME/CFS research: shorturl.at/rRFD9
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DecodeME the ME/CFS Study
 @DecodeMEstudy
Aug 27

Check out @davidtuller1 's interview with DecodeME investigator Prof Chris Ponting to hear more about our Initial DNA results.⬇️ youtu.be/CGUmcB_YIaA?si…

DecodeMEstudy's tweet card. Interview with Professor Chris Ponting about the DecodeME results.

youtube.com

YouTube

Interview with Professor Chris Ponting about the DecodeME results.

Source: youtube.com
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DecodeME the ME/CFS Study
 @DecodeMEstudy
Aug 27

Our genetics results webinar recording is now available! Thank you to the 2500+ people who joined us live last week. For those who want to watch back, or who couldn’t attend you can find it on our new website, here: shorturl.at/Uh8xb

DecodeMEstudy's tweet image. Our genetics results webinar recording is now available! Thank you to the 2500+ people who joined us live last week. For those who want to watch back, or who couldn’t attend you can find it on our new website, here: shorturl.at/Uh8xb
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DecodeMEstudy's profile picture.
DecodeME the ME/CFS Study
 @DecodeMEstudy
Aug 22

As we approach the end of August, the new DecodeME website, over on the University of Edinburgh, will now be the central place for our updates and contact information. You can find our new website here: decodeme.ed.ac.uk

DecodeMEstudy's tweet image. As we approach the end of August, the new DecodeME website, over on the University of Edinburgh, will now be the central place for our updates and contact information. You can find our new website here: decodeme.ed.ac.uk
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DecodeME the ME/CFS Study
 @DecodeMEstudy
Aug 22

“This solid scientific data from DecodeME brings new hope. I look forward to seeing where these discoveries lead for pwME, & their families & carers.” -Claire Tripp, DecodeME PPI. A huge thanks to our participants & supporters for making DecodeME possible.

DecodeMEstudy's tweet image. “This solid scientific data from DecodeME brings new hope. I look forward to seeing where these discoveries lead for pwME, & their families & carers.” -Claire Tripp, DecodeME PPI. A huge thanks to our participants & supporters for making DecodeME possible.
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DecodeMEstudy's profile picture.
DecodeME the ME/CFS Study
 @DecodeMEstudy
Aug 20

"Knowing that my DNA was a part of this study gives me a real sense of being part of something that is both exciting and could be the start of real change" We are incredibly grateful to every DecodeME participant. We would not be where we are today without you – thank you.

DecodeMEstudy's tweet image. "Knowing that my DNA was a part of this study gives me a real sense of being part of something that is both exciting and could be the start of real change" We are incredibly grateful to every DecodeME participant. We would not be where we are today without you – thank you.
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DecodeMEstudy's profile picture.
DecodeME the ME/CFS Study
 @DecodeMEstudy
Aug 18

(1/2) We have been blown away by the public response to our initial DNA results. We’ve been delighted to be featured in a range of news outlets, radio programs & articles. A huge thanks to those who helped spread the word & have helped us put ME/CFS research into the public eye.

DecodeMEstudy's tweet image. (1/2) We have been blown away by the public response to our initial DNA results. We’ve been delighted to be featured in a range of news outlets, radio programs & articles. A huge thanks to those who helped spread the word & have helped us put ME/CFS research into the public eye.
DecodeMEstudy's tweet image. (1/2) We have been blown away by the public response to our initial DNA results. We’ve been delighted to be featured in a range of news outlets, radio programs & articles. A huge thanks to those who helped spread the word & have helped us put ME/CFS research into the public eye.
DecodeMEstudy's tweet image. (1/2) We have been blown away by the public response to our initial DNA results. We’ve been delighted to be featured in a range of news outlets, radio programs & articles. A huge thanks to those who helped spread the word & have helped us put ME/CFS research into the public eye.
DecodeMEstudy's tweet image. (1/2) We have been blown away by the public response to our initial DNA results. We’ve been delighted to be featured in a range of news outlets, radio programs & articles. A huge thanks to those who helped spread the word & have helped us put ME/CFS research into the public eye.
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DecodeMEstudy's profile picture.
DecodeME the ME/CFS Study
 @DecodeMEstudy
Aug 18

“I am proud that this study was run differently, with lived experience at its heart. Proud that our community stepped up en masse to participate and proud that we are at the forefront of scientific research into this debilitating illness." - Sian Leary, DecodeME PPI

DecodeMEstudy's tweet image. “I am proud that this study was run differently, with lived experience at its heart. Proud that our community stepped up en masse to participate and proud that we are at the forefront of scientific research into this debilitating illness." - Sian Leary, DecodeME PPI
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DecodeME the ME/CFS Study
 @DecodeMEstudy
Aug 15

“DecodeME shows the incredible level of support that the ME/CFS patient community can give to research that involves them on a deep and meaningful level. Without the community, we could not have achieved all that we have.” Andy Devereux-Cooke (PPI Member and Co-Investigator)

DecodeMEstudy's tweet image. “DecodeME shows the incredible level of support that the ME/CFS patient community can give to research that involves them on a deep and meaningful level. Without the community, we could not have achieved all that we have.” Andy Devereux-Cooke (PPI Member and Co-Investigator)
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DecodeMEstudy's profile picture.
DecodeME the ME/CFS Study
 @DecodeMEstudy
Aug 14

See you soon for our genetic results webinar! Spots are limited to 3000, and registering does not guarantee a spot. Don't worry - we will also be sharing it live to our Facebook page at the time facebook.com/decodeMEstudy as well as recording it so that you can watch it back.

DecodeMEstudy's tweet image. See you soon for our genetic results webinar! Spots are limited to 3000, and registering does not guarantee a spot. Don't worry - we will also be sharing it live to our Facebook page at the time facebook.com/decodeMEstudy as well as recording it so that you can watch it back.
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DecodeME the ME/CFS Study
 @DecodeMEstudy
Aug 13

Together we’ve marked a turning point, and on behalf of the DecodeME team - thank you 🙏

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DecodeMEstudy's profile picture.
DecodeME the ME/CFS Study
 @DecodeMEstudy
Aug 13

Join us TOMORROW for our genetic results webinar! Register here: shorturl.at/fnB67 There are limited spots to join on Zoom (registering does not guarantee a spot). Don’t worry though, we will be recording it and we will also be sharing it live on Facebook at the time.

DecodeMEstudy's tweet image. Join us TOMORROW for our genetic results webinar! Register here: shorturl.at/fnB67 There are limited spots to join on Zoom (registering does not guarantee a spot). Don’t worry though, we will be recording it and we will also be sharing it live on Facebook at the time.
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DecodeMEstudy's profile picture.
DecodeME the ME/CFS Study
 @DecodeMEstudy
Aug 12

“These results are ground-breaking. With DecodeME, we have gone from knowing next to nothing about the causes of ME/CFS, to giving researchers clear targets.” - Sonya Chowdhury Find out how to support future research that builds upon DecodeME: shorturl.at/uO75u

DecodeMEstudy's tweet image. “These results are ground-breaking. With DecodeME, we have gone from knowing next to nothing about the causes of ME/CFS, to giving researchers clear targets.” - Sonya Chowdhury Find out how to support future research that builds upon DecodeME: shorturl.at/uO75u
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MECFSNews's profile picture. I used to post news and interesting information on ME/CFS but have retired to focus on other things.

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MEAssociation's profile picture. 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.

ME Association

@MEAssociation
Naomi_D_Harvey's profile picture. Zoologist. She/her. ME/CFS since 2002, now Severe. Pro-vax but vaccine injured. Life on pause (views my own - unemployed) ♿️ https://t.co/YeMrEWwEg5

Naomi Harvey PhD #WearAMask

@Naomi_D_Harvey
kimisgubbed's profile picture. Advocate & sharer of bio research for INFECTION ASSOCIATED CHRONIC DISEASES inc MECFS, Long COVID, MCAS, Dysautonomia, Vaccine injuries, FMS, Sjogrens & Lyme 🔬

Wading through treacle

@kimisgubbed
CaroleBruce17's profile picture. 💙Art, Nature, Books, Some Music. Severe ME 32 years. Daughter severe 38 years. Furious about treatment of ME. https://t.co/gEIrl86Wim

Carole Bruce

@CaroleBruce17
MEActNet's profile picture. A global network fighting for equality for Myalgic Encephalomyelitis. #MEAction #MillionsMissing https://t.co/JhhNZoFYJi

#MEAction Network

@MEActNet
OpenMedF's profile picture. OMF is fundraising to support open, collaborative research to find effective treatments and diagnostic markers for ME/CFS, Long COVID, and related diseases.

Open Medicine Foundation

@OpenMedF
Talmandaniel's profile picture. Founder of Northern Life Stories, co-host of @pempodcast23, photographer and blogger. PwME, sidelined social worker, grief dealer, joy peddler, SAFC fan, He/Him

Daniel Moore

@Talmandaniel
Be_Kinderr's profile picture. Chronic Illness Researcher. Science of #MECFS #LongCovid #POTS #EDS #MCAS CCI SFN Lyme etc & How They Connect🕵🏻‍♀️Scientist/Advocate Be_Kinder@disabled.social

Bea is Chronically Persisting✨

@Be_Kinderr
bhanlon15's profile picture. ME/CFS | Long COVID | IACC | bhanlon15.bsky

Billy Hanlon

@bhanlon15
precisionlifeAI's profile picture. PrecisionLife is the clinical-stage precision medicine company for complex chronic diseases. Creating better, more personalized treatment options for patients.

PrecisionLife

@precisionlifeAI
CMonaghanSNP's profile picture.

Carol Monaghan

@CMonaghanSNP
EdinUniMedicine's profile picture. This account is no longer active. Follow us on our other channels here: https://t.co/uDWPvys7pB

Edinburgh Medical School

@EdinUniMedicine
aryback4's profile picture. Clare Francis Research fellow at IGC Uni Edinburgh (Ponting Lab), funded by Action for ME.

a_ryback

@aryback4
drclairetaylor's profile picture. Doctor|Special interest in Long Covid,POTS,ME/CFS&MCAS| neuroscientist🧠Long Covid kids champion|long Covid clinic🏴󠁧󠁢󠁳󠁣󠁴󠁿Views my own

Dr Claire Taylor

@drclairetaylor
thermofisher's profile picture. 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.

Thermo Fisher

@thermofisher
Biocentre_UK's profile picture. Not-for-profit organisation providing world-leading sample management & high-capacity bioprocessing services.

UK Biocentre

@Biocentre_UK
zettagenomics's profile picture.

Zetta Genomics

@zettagenomics
Fatigo_MECFS's profile picture. #MECFS #Lyme recovery & creating awareness. Research, News, Views & Functional medicine approaches to healing #biohacking. Former Architectural designer on hold

Fatigo_ME

@Fatigo_MECFS
worldvsreality's profile picture. 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🪧♿️🩺💊☯️

Alaska

@worldvsreality
seaindreams's profile picture. ME, CCI, POTS, EDS, MCAS, ADHD, OCD, PTSD. Bedbound witch. she/they. Autistic. Real, relatively.

whisperkind

@seaindreams
BarbaraMolony's profile picture. Public Involvement Manager / Radiotherapist / Physicist / Neurodivergent / INFJ / #2e / Runner / Teacher / Amateur Photographer / Mum & Dog Mum All views my own

Barbara Molony-Oates 💙 She/Her

@BarbaraMolony
VanmeterAdrian's profile picture. I am trying to spread awareness for chronic illness. Sjögren’s, fibro, chronic fatigue, lupus, endometriosis, IBS, migraines. You're not alone 🖤

Autoimmune Warrior

@VanmeterAdrian
Rs_chronicdiary's profile picture. Just me trying to navigate multiple chronic illnesses and try to survive. ME/CFS, POTS, ASD, Chronic UTI and more

Chronic Diaries

@Rs_chronicdiary
lyndseysendoba1's profile picture. defying medical science every day,walking medical journal,disability&MH advocate,retired athlete,socially awkward;in it for the chicken nuggets@thewhole115yards

lyndseysendobattle

@lyndseysendoba1
WildlifeLucy's profile picture. Nature lover🐦, peace seeker, gentle soul. From engineer to psychology graduate. Now more husk than human🐌: Housebound Pw #MECFS #PoTS #CPTSD #Menieres

Lucy 🐾

@WildlifeLucy
ME_LisaZett's profile picture. #MECFS #Lyme #Democracy #🌈Ally PhD Political Science. I do care. she/her @lisazett@ohai.social @lisazett.bsk.social

Lisa Zett

@ME_LisaZett
Kenny_LCbio's profile picture. 🧠👩‍🔬 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

Kenny_LC

@Kenny_LCbio
KilcommonPhil's profile picture. 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.

Phil

@KilcommonPhil
Ms_readsalot's profile picture. Kindness always 🧘‍♀️ yet schadenfraude 😇. Not been active here since October 24. Today, 15th July 25, I'm checking how to delete my account.

Abby - Democracy must survive and thrive! 🇺🇦

@Ms_readsalot
long_covid's profile picture. UK charity dedicated to supporting people with Long Covid • Support • Research • Advocacy • Education •

Long Covid Support

@long_covid
ceo_na_mara's profile picture.

𝒄𝒆𝒐̀ 𝒏𝒂 𝒎𝒂𝒓𝒂

@ceo_na_mara
CherryMartin's profile picture. No tweets to see here…Find me over on @Irr_Anatomist.

Cherry Ferrier

@CherryMartin
granejane's profile picture.

jane pannell

@granejane
anarosahj's profile picture. #EncefalomielitisMiálgica

anarosah

@anarosahj
JeffLubell_C19's profile picture. 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.

Jeffrey Lubell (EDS, ME/CFS, LongCOVID Research)

@JeffLubell_C19
MrsProctor2010's profile picture. 1st wave longhauler, 80% recovered. Spending my days quizzing. #LongCovid #MEcfs #CovidIsNotOver

Peanut

@MrsProctor2010
petejm1958's profile picture. Socialist. Sociologist. From the plough... to the stars.

p.j.

@petejm1958
AGildedEye's profile picture. Breathe out. NB they/she. 'waleczna', apparently! 🌈🦄🌈🏳️‍⚧️🌙🥩⛩️ My main account is @chiller

A Weekend in Vagus 🌈

@AGildedEye
liviels's profile picture. Now on Bluesky: https://t.co/ByLhUtmD8H. I post my own and others' views on housing, politics, legal and social justice issues. #MyalgicE advocate

Livi Elsmore

@liviels
Joe1981777's profile picture. - Cracking the code of ME/CFS - Crushin poker as a hobby

JoeyS

@Joe1981777
Leonie61359764's profile picture. #MECFS nach Virusinfekt - Was ist ME/CFS? https://t.co/9Nry9UwsEa - Hier um auf mangelnde Versorgung & fehlende Forschung aufmerksam zu machen.

Tweeterella

@Leonie61359764
denHartogIvonne's profile picture. “Pain is inevitable, suffering is optional.”

Ivonne

@denHartogIvonne
CWassermann's profile picture. Television multi-tasker, expatriate Weegie. "Everything worthwhile is done with other people"

CW

@CWassermann
surfleif's profile picture. CFS fighter, former lawyer

Leif

@surfleif
CyanDippy's profile picture. She/Her, Thornback, Music Lover, AFOL, Model, Disabled and Chronically ill. Now on bsky - @cyandippy.bsky.social

Cyan (Sian)

@CyanDippy
FoxgloveTales's profile picture. https://t.co/1DxSLHCEJP

Find me on Bluesky - Bye!

@FoxgloveTales
Buckle_berry's profile picture. 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

Buckleberryferry🌱

@Buckle_berry
StylesSa191919's profile picture. Loved running, cycling, swimming & living life to the full until #LymeDisease #MECFS 🕷💚#bethelightinthedarkness🕯 #schnauzerlover 🐾 #LoveNotHate ❤

SStyles

@StylesSa191919
Fallaryn's profile picture. Tree herder. Garden gnome. Orcaholic (@PrairieOrca). Born into a 356 ppm CO2 world, now 426 ppm. 💉 pericarditis & dysautonomia https://t.co/SzmhT5fB8q

Fallaryn 🌻 zeroes 🦣 ca & 🟦

@Fallaryn
JackieLittle's profile picture. she/her #PwME #MECFS Homebound since 2017; my world is mostly online now. #CapitalismKills *Liberal ≠ Left* #DecolonizeYourMind #FreePalestine

Jackie Bonass née Little

@JackieLittle
amyboylanwrites's profile picture. Freelance #copywriting rock doc. Sticky #websitecopy, long #content & expert #articles. Life on ⏸ Household of pre-vax #LongCovid #PoTS #MCAS (she/her)

Amy Boylan

@amyboylanwrites
davro_t's profile picture. #MECFS since 2018. Socialist, antifascist, nerd, gamer, horror/sci-fi/fantasy. Used to read & run a lot. Now a 'useless eater' #millionsmissing #autistic #audhd

DT #MECFS #freepalestine #abolishthemonarchy

@davro_t
NigelTozer's profile picture. Winding down here, still look occasionally. Find me here more: @thesimplifier.bsky.social

Nigel T 🇺🇦🎗

@NigelTozer
Janebfc's profile picture. ❤ BFC. 💚 growing food/flowers. Has ME, osteoarthritis, fibromyalgia etc. Recovering political geek. Bit opinionated but *trying* to do it kindly ❤ Ig @janebfc

Jane Pike 💜💙

@Janebfc
AniRobb's profile picture. 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!" 💖

Ani 🎄⛄️❄️

@AniRobb
Malka_G's profile picture. Freelance communications specialist, editor, writer, advocate. Thoughts are my own, RTs ≠ endorsements.

MalkaG on Bsky 💙☁️🦋

@Malka_G

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