Jeremy Jeffs @magnetoJJ
Director at Magneto FIlms, making films for not for profits. Currently shooting photos of #PwME. Living with #ME since 1987 magnetofilms.com Herne Hill - London Joined June 2012-
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@ABrokenBattery Adam best wishes on your birthday. I hope you're able to celebrate it in some way and have a better year ahead. Now is a good time to say thank you for all your great work.
Heading off again to shoot more #PwME. I’m on a bit of a roll lately but so far the project has taken just over 2 years. Between my own #MECFS and the health of others, it’s tricky logistically! #HP5 #documentaryphotography #shotonfilm #blackandwhitephotography
(UK) Photographer Jeremy Jeffs @magnetoJJ is looking for more people to take part in a project that aims to give identity and visibility to people who are living with M.E. Info: meassociation.org.uk/2023/11/living… Someone else wrote the image #MEcfs #CFS #PwME
This project #LivesUnlived is still being carried out by @magnetoJJ who is still looking for #MEcfs patients in the UK who may be interested in being photographed for it. This is an example of his work, which he took of me. #MEawareness
This project #LivesUnlived is still being carried out by @magnetoJJ who is still looking for #MEcfs patients in the UK who may be interested in being photographed for it. This is an example of his work, which he took of me. #MEawareness https://t.co/eT6RKus9Aw
Getting ready for a day photographing 3 #pwme. It’s taken over a year to find a day when we’re all well enough. #hp5 #shotonfilm #mecfs
More pictures from @MarcDavenant on display.
Shooting with @Shelter today and the first thing I see in reception is this book by @MarcDavenant Nice work.
So excited to share this new episode of Post-Exertional Mayonnaise, out now! @judyintheskynet lives with severe ME and she and her partner Matthias organised an exhibition of work by #severeME patients from all over the world last summer. They talk here about their work!
As well as photographing people who have the same illness as I do - #MECFS - I’ve also started to co-produce images with people who have other #chronicillness Thought I’d better do some reading. Any other suggestions?
Now that’s how you package a #photobook , thanks @setantabooks Wonderful James’ House by @JacobAueSobol
Got a long drive to Bradford for a shoot - so I'll be listening to this en route. nice work @Talmandaniel !
Got a long drive to Bradford for a shoot - so I'll be listening to this en route. nice work @Talmandaniel !
#smalltowninertia It's the weekend, that means I'm offering up some prints for sale. Sales fund all the work that I do & put food on the plate. A2 & A3 available, all made by me, to order. Comment or message & I'll send you all the info. youtube.com/watch?v=uTK97c… A #rt helps X
🔮 Etiquette for Strumpets Zine Launch Thursday 7th September, 7-9pm Free and unticketed! Join @tsrenelle for the launch of her new zine 'Etiquette for Strumpets', a tongue in cheek book of Victorian writing and photography. glasgowzinelibrary.com/events/2023/9/…
Another great conversation yesterday. This time with Sally from @MEFoggyDog. Take a listen if you have the energy! #MECFS #MyalgicE #LongCovid
Another great conversation yesterday. This time with Sally from @MEFoggyDog. Take a listen if you have the energy! #MECFS #MyalgicE #LongCovid
Action for M.E. welcomes the release of the much-anticipated cross-Government interim delivery plan on ME/CFS. We hope that feedback from the community and experts will lead to continued improvements to the plan and address outstanding issues effectively.
Day 44: Joined by Jedi again today! @WAMESMECFS @Invest_in_ME @MEResearchUK #millionsmissing #pwME #meawareness #sunrise
It’s my 50th birthday today & 5yrs of the #DressForME #CharityChallenge for @Invest_in_ME I’d love it if Twitter shared my video or donated. I’m not well enough to go out on my birthday or dress up recently & this would make my day! Thank you 😍 justgiving.com/DressForME #pwME
I’m delighted that the cross government national #MECFS interim delivery plan will be launched for consultation later today. @actionforme Thanks to @thetimes for their coverage this morning raising much-needed awareness thetimes.co.uk/article/me-chr…
Today is #SevereMEDay: a day when we remember those whose lives were ended prematurely by #MyalgicEncephalomyelitis, and redouble our efforts to raise awareness of the severe forms of #MECFS. Please watch this short 📽️ #MedTwitter. #MedEd #r4today #C4News youtu.be/J9fQDXzLTNY
Christoph Ströck @cstroeckw
7K Followers 455 Following Soon, people will look back in disbelief at what has happened to patients with #MECFS and #PAIS | @weandmecfs co-founder
Daniel Moore @Talmandaniel
5K Followers 4K Following Curious & exhausted peace seeker, co-host of @pempodcast23, photographer and blogger. PwME, sidelined social worker, grief dealer, joy peddler, SAFC fan, He/Him
Katy B @KatyBruce108
5K Followers 5K Following Myalgic Encephalomyelitis - M.E + POTS 38 years Donor to the @mecfsbiobank & @DecodeMEstudy Please watch https://t.co/rPfzhZQ6po #pwME
Dan Wyke 🦠➡️�.. @Dan_Wyke
13K Followers 6K Following M.E. patient, advocate, person-centred counsellor (see link), recovering poet
Naomi Harvey PhD #Wea.. @Naomi_D_Harvey
15K Followers 4K Following Zoologist. She/her. 22yrs with ME/CFS. Pro-vax but vaccine injured. Life on pause (views my own - unemployed) ♿️ https://t.co/YeMrEWwEg5
Crafty Miss @CraftyMissB
5K Followers 3K Following I'm Beth, embroidery & craft are my buzz. #socialist #pwme #disabled insta: thecraftymissb https://t.co/H4UqOa9igd
Lizzy H @hopefullizzy
6K Followers 3K Following 29y/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✨
Paula Knight @Paula_JKnight
5K Followers 4K Following Graphic memoir THE FACTS OF LIFE (2017) Kidlit books x3 author. Disabled. Bedbound 5.5yr v severe #pwME Submerging writer. Total Bedass. Print Disabled she/her
Adam @ABrokenBattery
6K Followers 1K Following Severe ME patient currently on a 10% battery, the gas goes out more than I do. I also compile ME/CFS Awareness videos.
Jo @cfs_jo
3K Followers 1K Following CFS(!) & POTS diagnosis, ME symptoms - trying to accept. Still me. Sense of humour intact. Also on Insta as JustJoHere and BlueSky as JustJo
Martin Hippe @pausedME
7K Followers 474 Following East Westphalia by Nature ⎮Lawyer by Profession | #Musikrecht | #MECFS | @Mirame_Arts | No medical advice!
Carole Bruce @CaroleBruce17
6K Followers 5K Following Severe #ME for 32+ years. Ex- psychotherapist. Daughter, severe ME 38 years. Eldest son, MS. Apart from that ❤️Art, people,nature, books, some music.
Phoebe Boag @PhoebsBo
3K Followers 4K Following Life was once Leith, homelessness & a forklift truck. Life is now being chronically ill with ME & writing about it. Autistic. Smorky’s human. She/her.
Kirsty Schnickelfritz @KSchnickelfritz
3K Followers 1K Following Licensed to rest. Untapped resource, just mucking around.
Dr Ben Marsh 💙 @bendymarsh
5K Followers 346 Following Neurodisability Paediatrician educating re Postviral synd inc #MECFS #pwME #LongCovid @PSPforMECFS @DoctorsWithME ExeterChiefs & LFC fan. Ravenclaw. Views mine
Tracey Burgess @TraceyABurgess
2K Followers 3K Following Mum to a trans daughter 🏳️⚧️ who loves the natural world.🌿Degrees in Hist/Phil & Counselling/Psychotherapy. Unwell since 2007, worse 2016/17. Improved.🌼
PwME 4 bioMEdical res.. @ValeBodi
4K Followers 2K Following Surviving #MyalgicE #AAG to tell the story, patient&advocate w/ a JD, into: MEdicine, Social justice & the Arts, Human neutrino/MEdical apolide/gnarled Pacer
Tess Falor, Ph.D. | @.. @tessfalor
9K Followers 5K Following 🚀Space physicist➡️#MECFS researcher🧪 Founder - Renegade Research @renegaderes - RemissionBiome @remissionbiome ✨Serendipity Meets Preparation✨
Alisontomyradio @arisonsned
3K Followers 5K Following ME MCAS Lyme.Still with humour.Satire Music.Dream of life without illness. Wanna ride my bike. Cat & Dog Botherer.YP Counsellor retired. Retweet not endorsement
Tamesha Reale @RealeTames84490
90 Followers 5K Following
Anastasia Ryans @AnastasiaR49051
44 Followers 5K Following
John Rieken @john_rieke83683
96 Followers 5K Following
Antonia @hisdeepak
59 Followers 1K Following Only I know how cute and cute the little-famous locals are.
Charlotte @CharlotteClarkW
31 Followers 246 Following Blogger | Family History | ME Advocate #pwME #Fibromyalgia #breastcancer Mostly housebound. Lover of old things. Auntie to a multitude. List maker.
Kendal Bourgoin @BourgoKend
52 Followers 5K Following
Anne @AnneinAyrshire
2K Followers 1K Following Over 30 yrs of #ME. Severely limited since 2014. Living a v small life, crashed too much of the time. Still trying/hoping. Prev life #property #financial servs
Chronic Fatigue Barbi.. @FatigueBarbie
171 Followers 451 Following 💕 I’m a barbie girl in my chronic fatigue world 💕 Current: #mecfs #pots Previously: lawyer + actor Trying to find joy in the void 💖
Thomas Franz @ThomasFranzTF
129 Followers 382 Following ME/CFS, since 2014, Bell 20 | Fibro | PTSD | CMD | Histamin Health, Biooptimization, Strength Training, Growth, Science, Psychology, Philosophy
Birgit R @birgi1964
747 Followers 964 Following Hobbypsychologin, Schreihals, Querulantin, hysterisches Frauenzimmer
Arthur @unreal_arthur
8 Followers 160 Following
Justin Jonas @tnsmogul
27 Followers 124 Following
Elle @EleanorDavin
286 Followers 977 Following Human barely being. A decade of life lost to Severe ME. Formerly: NY creative director. Loved and miss friends, music, mountains, running and my road bike.
DasIstME @BobundDaisy
1K Followers 2K Following Psychologin, bis 2016 spez. in Therapien bei #ASS, seither arbeitsunfähig aufgrund ME, seit Covid schwer erkrankt #MECFS #LongCovid
peony @peony_386
111 Followers 869 Following
Limonary @Lemonarium_
186 Followers 1K Following
#NotJustFatigue @njfatigue
580 Followers 653 Following We are a 501(c)(3) sounding the alarm on ME/CFS through digestible, creative content. This is #NotJustFatigue
Elon Reeve Musk @EMusk76718
253 Followers 2K Following
Sarah Mac @grannyash510
929 Followers 3K Following M.E for 19 years. Views of fairness and equality for all. Here to learn and to be kind (usually 🙃). NHS supporter. Pro Science and knowledge.
Juniper Kleinberg @JunipKleinbe
56 Followers 5K Following
Mila Lesage @MilaLesage96175
41 Followers 5K Following
Emma Wooller @WoollerEmma
2K Followers 3K Following Coding is caring. Not that kind of Coder. I told you I was ill.
MartyZegar @MartyZegar98767
19 Followers 762 Following
Darren Parkinson 🌍.. @DarrenBar88
1K Followers 953 Following Shipley Green Party Town Cllr & campaigner. Tweeting about #climate, #environment, #activetravel, #Shipley, #Saltaire. Living with #LongCovid. Views own.
Nicola Jeffery @NicolaCJeffery
5K Followers 5K Following 'Behind that loud-mouthed journalist @MrTopple is an even louder-mouthed woman!' Mum, Activist, #ChronicIllness warrior! #BLM! Standing up to #Classism!
Kirst @kirstler31
2K Followers 937 Following Severe #MECFS 🛌 #LongCovid - March 2020 #PostVac #POTS #Renegade50 💫 @RemissionBiome
Hollie-Anne Brooks �.. @HollieAnneB
9K Followers 5K Following Award winning freelance journalist & broadcaster. Disability/politics/travel. Living a beautiful slow life with ME/fibro ✨ Tortured Poet 🤍 LPool N2 💜 SAFC ⚽️
CatherinCernansky @CatherinCe73061
56 Followers 2K Following
miss_malingerer💚 @miss_malingerer
208 Followers 1K Following writer but my fiction is in a defunct mag RIP ♿️ ME/CFS
l @TeewtYcul
25 Followers 249 Following
Joanne Smith - Jo @_Joannesmith
789 Followers 969 Following ME since 1991.Owned by Shih Tzu called Teddy 🐾 Interested in ME advocacy & research.Dogs.Wildlife. Books. Bit of Politics. #pwme @joannesmith.bsky.social
It's M.E. Linda 💙 .. @HappyHoundHouse
2K Followers 3K Following 2001 PVFS 'Recovered' to 90% by 2006. Sepsis 2013 resulted in M.E. Brain/fitness 'not what it used be'. Beloved Lisnakill Myles-Happy Hound himself🌈 💔
Pearline River @riv_pearl
36 Followers 5K Following
🐾🐾🐾loubylu @clearlu366
1K Followers 5K Following Tweeting approx 6 weeks.RegisteredTwitter2014 ,💕🐾https://t.co/LcaQeN84cn…💕Kindness
qua sar @quasar9uk
394 Followers 231 Following Corrupt UK establishment shrinks, DWP & insurance companies colluded to misrepresent the serious bio med illness that is ME as mental illness via The PACE Trial
emily fraser 🌿🐌.. @emilyesfraser
5K Followers 4K Following Former doc filmmaker/cinematographer/teacher, current full-time sick person, occasional poet
When You're Strange @a_broomstick
560 Followers 2K Following Far too many interests & not enough time. Posting all sorts of odd but interesting (well to me) weirdness & occasionally standing on one of my many soapboxes.
Maria Wagner @MariaWagnerBER
549 Followers 234 Following Mother (#PTBS) & Caregiver to my son (#MEcfs + #Non24) "Birth and death were easy. It was life that was hard.” ( Tom Robbins/ Jitterbug Perfume)
Cat on a bike @Cat_onabike
185 Followers 673 Following
Jane McMullen @jane_mcmullen
2K Followers 2K Following 2x Emmy nominated filmmaker & journalist for @BBC - The Day California Burned | Escape from Dubai | China’s Covid Secrets | Big Oil v The World
Mille-feuille @napoleonovid
171 Followers 2K Following 29 yo, T1D, hEDS, LC, mild MECFS and fibromylagia since 17 yo, ND. A human being in becoming.
Terri Wilder @WildNycgirl
2K Followers 1K Following Reporter @BodyPROHIV @TheBodyDotCom Opinions mine. HIV, Long COVID19, & ME/CFS Activist. ME/CFS expert. I live it. Chair, #MEAction Minnesota
🌱 katski 💙 @katkatski
15 Followers 808 Following
Daniel Moore @Talmandaniel
5K Followers 4K Following Curious & exhausted peace seeker, co-host of @pempodcast23, photographer and blogger. PwME, sidelined social worker, grief dealer, joy peddler, SAFC fan, He/Him
Katy B @KatyBruce108
5K Followers 5K Following Myalgic Encephalomyelitis - M.E + POTS 38 years Donor to the @mecfsbiobank & @DecodeMEstudy Please watch https://t.co/rPfzhZQ6po #pwME
Dr Claire Taylor @drclairetaylor
66K Followers 2K Following Doctor|Special interest in Long Covid,POTS,ME/CFS&MCAS| neuroscientist🧠Long Covid kids champion|WHN expert advisor|long Covid clinic🏴Views my own
Dan Wyke 🦠➡️�.. @Dan_Wyke
13K Followers 6K Following M.E. patient, advocate, person-centred counsellor (see link), recovering poet
Naomi Harvey PhD #Wea.. @Naomi_D_Harvey
15K Followers 4K Following Zoologist. She/her. 22yrs with ME/CFS. Pro-vax but vaccine injured. Life on pause (views my own - unemployed) ♿️ https://t.co/YeMrEWwEg5
Crafty Miss @CraftyMissB
5K Followers 3K Following I'm Beth, embroidery & craft are my buzz. #socialist #pwme #disabled insta: thecraftymissb https://t.co/H4UqOa9igd
Lizzy H @hopefullizzy
6K Followers 3K Following 29y/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✨
Paula Knight @Paula_JKnight
5K Followers 4K Following Graphic memoir THE FACTS OF LIFE (2017) Kidlit books x3 author. Disabled. Bedbound 5.5yr v severe #pwME Submerging writer. Total Bedass. Print Disabled she/her
Adam @ABrokenBattery
6K Followers 1K Following Severe ME patient currently on a 10% battery, the gas goes out more than I do. I also compile ME/CFS Awareness videos.
Jo @cfs_jo
3K Followers 1K Following CFS(!) & POTS diagnosis, ME symptoms - trying to accept. Still me. Sense of humour intact. Also on Insta as JustJoHere and BlueSky as JustJo
Martin Hippe @pausedME
7K Followers 474 Following East Westphalia by Nature ⎮Lawyer by Profession | #Musikrecht | #MECFS | @Mirame_Arts | No medical advice!
Anil van der Zee © @AnilvanderZee
9K Followers 824 Following Former professional ballet dancer | Bed/sofa-bound M.E. patient | Using Twitter to raise awareness for #MyalgicE | #art2cureME #pwme #millionsmissing
Carole Bruce @CaroleBruce17
6K Followers 5K Following Severe #ME for 32+ years. Ex- psychotherapist. Daughter, severe ME 38 years. Eldest son, MS. Apart from that ❤️Art, people,nature, books, some music.
Phoebe Boag @PhoebsBo
3K Followers 4K Following Life was once Leith, homelessness & a forklift truck. Life is now being chronically ill with ME & writing about it. Autistic. Smorky’s human. She/her.
Kirsty Schnickelfritz @KSchnickelfritz
3K Followers 1K Following Licensed to rest. Untapped resource, just mucking around.
Dr Ben Marsh 💙 @bendymarsh
5K Followers 346 Following Neurodisability Paediatrician educating re Postviral synd inc #MECFS #pwME #LongCovid @PSPforMECFS @DoctorsWithME ExeterChiefs & LFC fan. Ravenclaw. Views mine
ME/CFS News @MECFSNews
15K Followers 712 Following News, interesting information and commentary on ME/CFS. My bluesky account is @mecfsnews.bsky.social Looking for paid ME/CFS related work.
Agy Lena 🏳️�.. @agy_lena
9K Followers 290 Following Ex athlete, biker, climber, 1st class biomedicine grad. Entire life lost 2017 post viral ME/CFS. C💉injured 2021 thus turned from pro to anti vax
Tracey Burgess @TraceyABurgess
2K Followers 3K Following Mum to a trans daughter 🏳️⚧️ who loves the natural world.🌿Degrees in Hist/Phil & Counselling/Psychotherapy. Unwell since 2007, worse 2016/17. Improved.🌼
Cyrus | Mastodon in b.. @CyruxiME
2K Followers 602 Following Energetically compromised by severe #MECFS. All systems operating at minimum capacity & overloaded. he/him. On the Fediverse: @[email protected]
Kirstie Sivapalan @KirstieSivaP
3K Followers 2K Following Making a noise about the injustices & lack of support for #pwME #LongCovid 💙 @[email protected] 🐘 @KirstieSivap 🐳 @kirstiesivapalan 🧵
Anne @AnneinAyrshire
2K Followers 1K Following Over 30 yrs of #ME. Severely limited since 2014. Living a v small life, crashed too much of the time. Still trying/hoping. Prev life #property #financial servs
Amar Sharif @AmarSharif11
482 Followers 476 Following Consultant Physician Gastroenterologist and Hepatologist MBBS, MRCP, MD, FRCP.
Sarah Mac @grannyash510
929 Followers 3K Following M.E for 19 years. Views of fairness and equality for all. Here to learn and to be kind (usually 🙃). NHS supporter. Pro Science and knowledge.
Patsy Stevenson @PatsyeStevenson
46K Followers 3K Following Award winning Campaigner. Harper’s Bazaar Woman of the Year Bylines; @Eveningstandard @marieclaireuk @BylineTimes she/her [email protected]
markmooch @MarkMooch
1K Followers 1K Following Elder Millennial & Social Justice Warrior. ME Patient. Drummer. Northerner. Pontificate a lot. Cannot read research papers due to fatigue. Dry Humour. 🌱
Himmat @himmatb15
954 Followers 664 Following Writer and editor on pause due to Long Covid/vaccine injury since 2021. Severe and fully bedbound since 2023. ME/CFS | POTS | hEDS. he/him
Darren Parkinson 🌍.. @DarrenBar88
1K Followers 953 Following Shipley Green Party Town Cllr & campaigner. Tweeting about #climate, #environment, #activetravel, #Shipley, #Saltaire. Living with #LongCovid. Views own.
Nicola Jeffery @NicolaCJeffery
5K Followers 5K Following 'Behind that loud-mouthed journalist @MrTopple is an even louder-mouthed woman!' Mum, Activist, #ChronicIllness warrior! #BLM! Standing up to #Classism!
Joanne Smith - Jo @_Joannesmith
789 Followers 969 Following ME since 1991.Owned by Shih Tzu called Teddy 🐾 Interested in ME advocacy & research.Dogs.Wildlife. Books. Bit of Politics. #pwme @joannesmith.bsky.social
Kirst @kirstler31
2K Followers 937 Following Severe #MECFS 🛌 #LongCovid - March 2020 #PostVac #POTS #Renegade50 💫 @RemissionBiome
Olivia @thepollenberry
721 Followers 324 Following Occupational Therapist 💚 Emergency Dept and Acute Care. #longcovid.
Hollie-Anne Brooks �.. @HollieAnneB
9K Followers 5K Following Award winning freelance journalist & broadcaster. Disability/politics/travel. Living a beautiful slow life with ME/fibro ✨ Tortured Poet 🤍 LPool N2 💜 SAFC ⚽️
It's M.E. Linda 💙 .. @HappyHoundHouse
2K Followers 3K Following 2001 PVFS 'Recovered' to 90% by 2006. Sepsis 2013 resulted in M.E. Brain/fitness 'not what it used be'. Beloved Lisnakill Myles-Happy Hound himself🌈 💔
Katie Johnstone @SockFoam
740 Followers 718 Following She/her. Chronically ill with ME. Founder of the ME/CFS Medical Education Campaign, blogger on Substack.
Rosanna Wregor @Anonetal123
310 Followers 649 Following Cosmopolitan, DVM, caregiver for soulmate with very severe ME, the barbell keeps me sane. @[email protected]
Bridget O'Shea @Bridget_OShea
2K Followers 2K Following Certified medical #writer, enthusiastic #journalist, cat mom, @UChicagoProEd, ME/CFS patient. Freelance journalist. Available for medical writing and editing.
Nikki S. @NikkiS_MCSFS
1K Followers 1K Following Me?…Forensics, furry friends (especially Labradors!) & some creativity! Founding Member @long_covid. Views my own. https://t.co/WZjZFGNOo4. #LongCovid #FBLC
Jane McMullen @jane_mcmullen
2K Followers 2K Following 2x Emmy nominated filmmaker & journalist for @BBC - The Day California Burned | Escape from Dubai | China’s Covid Secrets | Big Oil v The World
Cat on a bike @Cat_onabike
185 Followers 673 Following
Maria Wagner @MariaWagnerBER
549 Followers 234 Following Mother (#PTBS) & Caregiver to my son (#MEcfs + #Non24) "Birth and death were easy. It was life that was hard.” ( Tom Robbins/ Jitterbug Perfume)
emily fraser 🌿🐌.. @emilyesfraser
5K Followers 4K Following Former doc filmmaker/cinematographer/teacher, current full-time sick person, occasional poet
🐾🐾🐾loubylu @clearlu366
1K Followers 5K Following Tweeting approx 6 weeks.RegisteredTwitter2014 ,💕🐾https://t.co/LcaQeN84cn…💕Kindness
Tony Britton @WestonMale
123 Followers 473 Following Oddfellow as in @OddfellowsUK. Likes books, beer and local news. Ex-journo and news editor. Now working once again for the fabulous @MEAssociation.
Emma H 🖤🗿七七 @Emma_h_mua
937 Followers 446 Following -Emma 🗿 -she/her -Manchester -Pro special effects artist -World skills 2015 gold winner
clair elle ❀🦌 @ClairElle__44
3K Followers 90 Following former IT analyst and occasional film photographer. chronically Ill for the social mystique (ME, hEDS & POTS)
Rupert Rivett @rupephoto
10K Followers 11K Following Photographer tweeting about photography, environmental issues, as well as population issues, all mixed in with politics, health, fitness and well-being
Alex Sprackland @AlexSprackland
2K Followers 1K Following Engineer. BMX. Powerlifter. Electronic music producer. Long Covid since March 2020 has put all that on hold, though 😓. https://t.co/NwtnfzoDjG
Billboards for LC/MEC.. @LCMEBillboards
1K Followers 215 Following Public awareness campaign. We need biomedical research and treatments for Long Covid/ME/CFS now. https://t.co/zppTxZjTK8
Dr. Jo Blackwell @JustanaverageJo
446 Followers 756 Following PhD, MPH, BSc(Hons) I Head of Development @ActiveLincs I Visiting Fellow @UoLCoHS I Mum of boys I Dementia Friends Ambassador.
Paul Gads @PaulGadsden82
858 Followers 827 Following Golf fan. Food fan. Animal fan. Mostly bedbound due to severe ME. Also MCAS. Quite dull.
Nathalie Robin Justic.. @welcomewords
8K Followers 9K Following Writer. Photographer. Traveller. Cook. Married to my best friend: 19 yrs. #MyalgicEncephalomyelitis: 3+ decades. 80-100% bed bound: 5 1/2 yrs. Empathy is key.
Patrick Gallagher @patrickG731
2K Followers 3K Following Post-Doc Researcher SETU. HECAT 2020. Political Economy of Finance, Financialisation, Soc of Development, IPE, CPE, Labour Markets. #LongCovid
Sam🐟❤🌈😷�.. @CounsellingSam
43K Followers 42K Following #LongCovid #POTS #actuallyautistic #POC lover of beauty and art, hater of bigotry and racism Pro-EU. #FreePalestine No #Ableism Country Not Party No Freeports
ME Association @MEAssociation
20K Followers 2K Following We raise funds for medical research into ME/CFS and provide support, information & campaign for people in the UK. RTs do not necessarily mean endorsement.
TamaraDnomad @TamaraDNomad
599 Followers 864 Following Disabled advocate - #Interiordesigner - Nomad - #Anthropology student - Multi local - #SWYer - #Fibro + #MECFS - 1 of the #MillionsMissing + #Disabledguerrera
Jo @myspecial3girls
6K Followers 5K Following Olivia,Sophie&Evie’s Mum😍 All 3 have a very rare genetic disability.I fight each day for their health & happiness. 💙NHS. ProEU.🇪🇺 Tories out.🤬Be Kind.💛
Hillary Johnson: jour.. @oslersweb
4K Followers 950 Following The Why "Delicious" "Devastating" "Indispensable" Reimagining Ruth "..has a raw power" Osler's Web "A relentless, meticulous, highly persuasive expose."
EndMalnutritioninME @MalnutritionME
233 Followers 296 Following Campaign for improvements in medical care for ME patients with gastrointestinal symptoms. https://t.co/fOkzoiJqv2
I🖤 @inadarkroom247
905 Followers 310 Following 25, UK and Dying from covid induced very severe ME. POTS + mild MCAS. FUNCAP 1.2
Brown Owl Press @BrownOwlPress
3K Followers 493 Following Independent publisher of photobooks and zines. We care.
Jacob Aue Sobol @JacobAueSobol
2K Followers 157 Following
Unite London Digital .. @unitelondonitc
692 Followers 1K Following @unitetheunion @unitelondoneast Sponsors of @croydonwfc
Andrea Joliat @AndreaJoliat
1K Followers 2K Following Advocate for research and support for all who suffer from the neglected illness MEcfs. Including my son.
Daniel Williams @daniellw88
377 Followers 1K Following
bethereificould @bethereificould
604 Followers 1K Following A mirrorbox and map taking messages from people with ME/CFS or long COVID to places they love but can no longer get to #ACEsupported #socialart #missingmillions
Tweets @ChronicMyalgicE
1K Followers 812 Following Dutch | life derailed due to #IBD & #MECFS | sofa bound | on Twitter to raise awareness for post infectious diseases | one of the #MillionsMissing
I'm terrified of all the talk coming from the Tories about disability benefits reform. Not only because I barely manage to survive on the amount I am currently on (and rely heavily on family support), but because I can see them removing the minimum income waver from partner +
Sorry I've been quiet here recently. Particularly crashy and have PIP assessment this morning. There are two excellent podcasts to go out. Just need to find brain energy to upload them!
What a day! #SevereME is in itself too much to handle yet what reduced me to tears, palpitations and severe #anxiety came in the form of my local #NHS #DistrictNurse team! They showed total disregard for NICE guidelines @NICEComms for patients with Myalgic Encephalomyelitis and…
#NewProfilePic April 2024 #MindSetMatters #SevereME
Sadly #pwME are preaching to the converted. We are all screaming into the same void. So long has it been this way. Something needs to change. Those who say they have our backs, need to step up & prove it. Actions, not timid platitudes #MEAwarenesshour #SaveCarlasLife #ExposeMENow
Don't want to speak too soon but I think my crash is on its way out after 4 days. That was awful. Was struggling to chew again. But curtains open again today #pwME
Given I can’t drink alcohol any more, probably not a great thing to have TikTok followed that wine bloke who did 26 wines on the marathon at the weekend - but, he’s quite amusing. Suspect would be sacrilege to ask about non-alco wines 😬
Argh. When someone phones just before #c4news. His 87th b'day so I'll let him off. Good guy. Rugby coach when in uni and he's kept in touch. Found out few yrs back his b'day so send email. He phones back for chat. Being blokes though neither in email nor chat do we mention b'day.
Well I've just popped into Twitter but now starting day three of some kind of cluster headache migraine thing so I'd better pop out again but you're all so funny and that cheers me up
Managed to go out for my mom's birthday. I'm a bit dead, but for the first time in a long time I almost feel alive.
Struggling at the moment after the district nurse visit, the online protest, and then some more bereavement news yesterday. Will probably cut back a bit here rn. My 'body battery' has plummeted #pwME
Scan today. Honestly so relieved to have not been kept in hospital, but absolutely shattered because I’ve been at the hospital or doctors 4 days out of 5 😭 Hopefully it either shows something or doesn’t an improves drastically somehow.
So exhausted from my illness I can't keep up with all your lovely replies. I was feeling broken and hopeless yesterday. Not without my faith, but so ill and weak, plus struggling to share my art and books the way I feel God wants me to. Stranded for so long. Thank you all! 🙏🐝
Bit of a nightmare of a weekend but everyone at NHS111 was brilliant & at the local urgent care too, tried their best to get me the most appropriate care given my M.E severity etc. unfortunately did have to go to hospital but thankfully not A&E which we were avoiding at all cost
Chuffin' #MCAS, treating me to one of those days where I just want to, erm, peel the skin off my face.. My body is so kind to me 🤪
It was an honour to be asked to talk about #MyalgicE on a friend's podcast. If you'd like to hear my story and support Lisa's podcast about living with grief please check the link in the rt! I hope I represented the ME community ok!
Recently Daniel was interviewed on a friend's podcast about living with ME. Check it out! open.spotify.com/episode/1MnE3O…
Just letting people know Im still here and struggling on. Taking it day by day. Hope everyone is as well as can be. 🫂
When you wake up feeling really rough but don't know why and then you remember you actually went out yesterday. I don't think I'll ever fully accept how those of us #pwME are punished just for doing things that everyone else takes for granted.
Thanks to @AyshahTull and the #c4news team for continuing to cover #MEcfs. Though the story about why for decades society hasn't taken the illness seriously enough remains to be told...
@Channel4News Thank you so much for having me on your programme and sharing my story- you can see how much it means to so many people. Thank you so much @DecodeMEstudy and @CGATist and @KathrynSamsonC4 and to Joe the research journalist. X
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