Paul Mc Daid @paulthedaid
ME/CFS. Determined father. Physics graduate, science nerd, LFC fan. Joined March 2009-
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I got a text message yest to say that I'm still on the waiting list to see a neurologist. I was referred urgently by my GP in 2015 bc I was having seizures. When they saw 'ME/CFS' on the referral, they downgraded to routine. 9 years. Is this a record?
So many! I'm sorry to be the bearer of more sad news this morning. Condolences to friends and family. 🕯️ #MyalgicEncephalomyelitis #MECFS
Unpopular opinion: FND is a real disorder. It's best not to criticise those who discuss it or treat it. The problem is those who misdiagnose ME as FND. If we confront everyone who even mentions FND or BPS, then we make it too easy for the Wessely school to dismiss our arguments
I'm not sure why but my eyesight is going in and out. I've managed 15 minutes of #SaveCarlasLife #ExposeMENow but this symptom is new and worrying. Good luck to everyone tweeting. Get this trending please to end mistreatment of M.E patients in hospital NOW.
🧵of clips @GeorgeMonbiot talking to @davidtuller1 about his recent article where he describes the psychologisation and treatment of #MECFS as "the greatest medical scandal of the 21st century."
There shouldn’t be any hypocrisy in practicing medicine. I, myself, am a neurologist who has been studying dementia patients for over two decades. Dementia diagnoses mostly rely on clinical assessments rather than biomarkers. No one has questioned my diagnoses of Alzheimer’s. Why…
Diagnostic test can identify hallmarks of chronic fatigue syndrome in blood cells eng.ox.ac.uk/news/diagnosti…
#BringMillieHome 1/9 🧵 There has been much recent media coverage/discussion about the case of Millie McAinsh. Millie is a young woman who has been diagnosed with #SevereME. She was admitted to the Royal Lancaster Infirmary some time ago as she was unable to ingest/digest food.
The only way to live with severe ME without having a permanent existential crisis is to be in, and to accept, the present. But our present is largely unbearable. What then? #mecfs #longcovid
'I can't walk, talk or eat - doctors don't believe me and I think I'll die' mirror.co.uk/news/health/se…
Bernie Sanders (@SenSanders) has released a #LongCovid Moonshot Legislative Proposal calling for $10b in research funding!! This is thanks to so much advocacy from patients & allies 💓 Immense gratitude to @LisaAMcCorkell @patientled @LCMoonshot @MichaelPelusoMD & the community!
Bernie Sanders (@SenSanders) has released a #LongCovid Moonshot Legislative Proposal calling for $10b in research funding!! This is thanks to so much advocacy from patients & allies 💓 Immense gratitude to @LisaAMcCorkell @patientled @LCMoonshot @MichaelPelusoMD & the community!
On #WorldHealthDay I’d like to say a big f**k you to the people who have actively contributed to the denial of #MECFS. No treatment & millions of lives destroyed. This year alone at least 4 women have been denied proper healthcare in NHS hospitals. It didn’t have to be this way.
I still think this undersells it. I had seizures. I couldn’t write. I couldn’t read. I couldn’t have short conversations. We don’t talk about SEVERE cognitive impairment enough.
I still think this undersells it. I had seizures. I couldn’t write. I couldn’t read. I couldn’t have short conversations. We don’t talk about SEVERE cognitive impairment enough.
I can only speak personally. But my symptoms suggest metabolic impairment, and subsequent toxicity and immune activation. The pain, muscle weakness, exhaustion must be coming from the muscles themselves, probably impaired by increased immune up regulation.
I can only speak personally. But my symptoms suggest metabolic impairment, and subsequent toxicity and immune activation. The pain, muscle weakness, exhaustion must be coming from the muscles themselves, probably impaired by increased immune up regulation.
Right! Enough already! GET doesnt work for #ME No more funding allowed 🛑 “Conclusion:There was no evidence that GET was more effective or cost-effective than AM…with v limited improvement in either study group evident by 6 or 12-month assessment points” link.springer.com/article/10.100…
This weeks Guardian Science podcast talks about Epstein Barr virus. It’s excellent in general, and mentions ME/CFS.
ME/CFS/LC is an Ever Changing Journey Recently after a crash I kept thinking how I hoped I could get back to where I was before the crash. My mind kept going over and over my current, more limited state and everything I was able to do before that I could not do now. "Would I…
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✨
Anil van der Zee © @AnilvanderZee
9K Followers 823 Following Former professional ballet dancer | Bed/sofa-bound M.E. patient | Using Twitter to raise awareness for #MyalgicE | #art2cureME #pwme #millionsmissing
It'sME(Jaime) @exceedhergrasp1
20K Followers 5K Following Director of Sci & Med Outreach, #MEAction Stanford Med #ME, #EDS, #POTS, #LongCOVID Views my own [email protected]
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
Hannah Davis @ahandvanish
60K Followers 4K Following Research, algorithmic music, machine learning/AI, anti-bias in AI data. #LongCovid research & advocacy @patientled. they/them. DMs rarely checked
LongCovidPharmD @organichemusic
37K Followers 1K Following Doctor of Pharmacy. Long Covid, EBV & ME/CFS research. Here to share & learn. Tweets not medical advice. https://t.co/jqc4g8cFLa https://t.co/lKQezPwtQs
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
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.
Debbie Seymour @debbie_seymour
2K Followers 779 Following This account can no longer be managed at this time due to Debbie's deteriorating condition. She is okay, but not improving. #LongCovid #MECFS #POTS
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
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
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.
Dr Asad Khan FRCP FRA.. @doctorasadkhan
28K Followers 3K Following Lung Dr on pause since Nov 20 #LongCovid #POTS #MCAS #HSD #pwME #Aotearoa Views my own; Retweets≠endorsements #freepalestine #TeamClots ZIONISTS WILL BE BLOCKED
Billy Hanlon @bhanlon15
12K Followers 11K Following Director of Advocacy & Outreach, Minnesota ME/CFS Alliance | Long COVID Ally
davidtuller @davidtuller1
10K Followers 2K Following Senior Fellow in Public Health and Journalism, Center for Global Public Health, UC Berkeley. My academic position is largely funded by donations from patients.
Crafty Miss @CraftyMissB
5K Followers 3K Following I'm Beth, embroidery & craft are my buzz. #socialist #pwme #disabled insta: thecraftymissb https://t.co/H4UqOa9igd
Natalia @NataliaHodgins
7K Followers 1K Following Disabled writer with words in @Refinery29AU, @ABCNews, @PublicHerald | Activist | Feminist | MECFS | Follow on IG - same handle
Tess Falor, Ph.D. | @.. @tessfalor
9K Followers 5K Following 🚀Space physicist➡️#MECFS researcher🧪 Founder - Renegade Research @renegaderes - RemissionBiome @remissionbiome ✨Serendipity Meets Preparation✨
Sibylle Dahrendorf �.. @sibylle_berlin
6K Followers 3K Following Once a filmmaker now stuck in horizontal hell | #SmallFiber #BigPain #POTS #MCAS #CCI #Lyme #FQToxicity #ME I Stop denial of #ComplexChronicIllnesses I
Elaina Christenson @elaina82250
82 Followers 5K Following
Nam Lampke @NLampke13375
88 Followers 5K Following
Ttifc @Ttifc1
400 Followers 4K Following
DF @SWorkAllianceRM
917 Followers 5K Following ♡ CDA, degrowth, social ecology, race, ecology & masculinities, disability; medical & environmental humanities #chronicpainpatient #bunnymom
🐾🐾🐾Claire @clearlu366
1K Followers 5K Following Tweeting approx 6 weeks.RegisteredTwitter2014 ,💕🐾https://t.co/LcaQeN8C1V…💕Kindness
MyVaccident @MyVaccident
55 Followers 227 Following #LongVax #LongCovid Dx: Post Vaccination Syndrome via #Yale neurologist 2021. #Pfizer Lot #EW0169 &7 #ER8736. Disabled American ♿️ #Dysautonomia #Polyneuropathy
Nicole #KeepMasksInHe.. @chronicoley_me
149 Followers 1K Following PhD in biomedical physics. Disabled, chronically ill: endometriosis, severe ME/CFS, probably more. Mixed race, acespec, avid knitter, former dancer.
Charlotte @CharlotteClarkW
31 Followers 245 Following Blogger | Family History | ME Advocate #pwME #Fibromyalgia #breastcancer Mostly housebound. Lover of old things. Auntie to a multitude. List maker.
shoshannette @shoshannette
331 Followers 2K Following
India Acoff @IndiaAcoff27771
87 Followers 5K Following
Cynthia Piercy @8thCyn
1K Followers 655 Following Author, Actor, Fangirl. Candidate for Queen of Canada. Opinionated, and always right. I may suffer fools, but I'll never do it gladly. #LongCOVID #LongHauler
Conchita Onsurez @c_onsure
71 Followers 5K Following
Jay Spero @ssppeerroo
562 Followers 719 Following it's better than an egg. Hey, what happened to the eggs? Never mind. It’s better than generic stock selfies or anime or silly images based on identity politics.
babs @halfateaspn
201 Followers 550 Following 20s. she/her. disabled, queer and poc. ME/CFS and comorbidities. mostly bedbound. no bigots. be kind. 🇵🇸🏳️🌈🏳️⚧️
Saskia Mentel @MentelSask19576
80 Followers 5K Following
Freya-rose Camelin @FCamelin63705
72 Followers 5K Following
Lilia Tapian @LiliaTapia92204
73 Followers 5K Following
Metrodora Foundation @MetrodoraFdtn
366 Followers 414 Following Catalyzing scientific collaboration and discovery to find cures for chronic, multisystem disorders.
David Skidmore @Lymeloonies
4K Followers 3K Following Husband, father, cartoonist, musician @ 12 years with Chronic Lyme disease - I so hate ticks, but denial more! Created a cartoon book about Lyme (link below)
Elois Le @EloisLe113747
96 Followers 5K Following
Lelah Huxtable @LelHuxta
95 Followers 5K Following
Megan Jayne Shepherd�.. @MJayne_21
1K Followers 2K Following Nature enthusiast🦋🐝🏞 BSc Environmental Conservation graduate. Living w/#MEcfs 16yrs. Aspiring conservationist, if illness allows it.
Cassandra 😈 @CassandraA5715
17 Followers 223 Following Мesmеrizing siren seeking unfоrgettаble nights of pаssiоn
Kai Mino @KaiMino462155
67 Followers 5K Following
Dannette Milot @DanneMilo
23 Followers 3K Following
Erika Neonakis @ENeonak
68 Followers 5K Following
Didier @DidierLobby
132 Followers 477 Following Severe #ME after Covid infection Feb'22. Young dad. Bedbound. 🛌
Asuncion Honsinger @AsuncionHo18055
75 Followers 5K Following
Andrew Green @AndrewG76201347
1K Followers 716 Following ME/CFS, POTS, MCAS. Female (ignore name). I post anonymously because I share medical details of my child too young to consent to public sharing.
Cat @Catinmyfamily
840 Followers 1K Following Long Covid since 6/22 | Treatment Seeker | #FBLC | A new account for privacy
Kittie Meinert @KitMeine
40 Followers 3K Following
Katharina 🍀 @katha.. @katha1970
885 Followers 2K Following Here for research + info on #ChronicMigraines #MECFS #LongCovid #MCS #MCAS #ChronicPain #Neuroscience #Psychology #MedicalGaslighting, posts German & English 🎶
Loraine Bursell @l_lorai
96 Followers 5K Following
Malena Locci @LocciMalena
22 Followers 311 Following
Edna, M.E.Advocate �.. @EdnaMacNamara
699 Followers 1K Following 💙 M.E.Carer & Advocate of son aged 30, ME for 10yrs 💙. RaisingAwareness for #PwME. #Carers #LC #findAcureME
Elon Reeve Musk @EMusk76718
252 Followers 2K Following
Kaycie Busitzky @busitzky13813
65 Followers 5K Following
UnhappySisyphus @NikeyNiki47281
74 Followers 477 Following
jess @jessicaliu35752
11 Followers 121 Following 18 yr old w very severe me/cfs and long covid. been lurking for a while.
Malaysia Virgen @vir_malay
60 Followers 5K Following
Joanna Mensi @JoannaMens24091
70 Followers 5K Following
Reform Advocates @AdvocatesReform
563 Followers 1K Following Campaigning against Injustice in Children's Social Care - Advocating for the invisible - Creative writer and budding journalist - Uniting the community.
carrie dalton @cazd45
1K Followers 1K Following Associate Professor of Neuroscience and Genetics @BMRC_News Theme Lead for Living Well with Chronic Disease @SHU_AWRC
Lou💜 @LouNicholls
436 Followers 566 Following Homeowner, Brighton Marathon finisher 2017 & 2018. Civil Servant, Auntie & friend 🤗 Recovering CFS/ME 🙏🏻🏳️🌈
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✨
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
Janet Dafoe @JanetDafoe
15K Followers 220 Following 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...
Bhupesh K Prusty @BhupeshPrusty
15K Followers 68 Following A passionate molecular virologist who believe in patient oriented scientific research. Using viruses to understand human existence. Science is for society.
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
Anil van der Zee © @AnilvanderZee
9K Followers 823 Following Former professional ballet dancer | Bed/sofa-bound M.E. patient | Using Twitter to raise awareness for #MyalgicE | #art2cureME #pwme #millionsmissing
It'sME(Jaime) @exceedhergrasp1
20K Followers 5K Following Director of Sci & Med Outreach, #MEAction Stanford Med #ME, #EDS, #POTS, #LongCOVID Views my own [email protected]
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
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.
Dan Wyke 🦠➡️�.. @Dan_Wyke
13K Followers 6K Following M.E. patient, advocate, person-centred counsellor (see link), recovering poet
Hannah Davis @ahandvanish
60K Followers 4K Following Research, algorithmic music, machine learning/AI, anti-bias in AI data. #LongCovid research & advocacy @patientled. they/them. DMs rarely checked
Tom Kindlon @TomKindlon
14K Followers 578 Following With ME 35 years (29 yrs severe). 95% of posts on #MEcfs/#LongCovid/#chronicillness. 26 publications in peer-reviewed journals. @IrishMECFSAssoc trustee 27 yrs
LongCovidPharmD @organichemusic
37K Followers 1K Following Doctor of Pharmacy. Long Covid, EBV & ME/CFS research. Here to share & learn. Tweets not medical advice. https://t.co/jqc4g8cFLa https://t.co/lKQezPwtQs
Sten Helmfrid 🇺�.. @StenHelmfrid
7K Followers 205 Following Ph.D. in physics, also interested in mathematics and science theory. Loves to apply general knowledge of science to other fields, for example ME/CFS.
Martin Hippe @pausedME
7K Followers 474 Following East Westphalia by Nature ⎮Lawyer by Profession | #Musikrecht | #MECFS | @Mirame_Arts | No medical advice!
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
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.
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
Debbie Seymour @debbie_seymour
2K Followers 779 Following This account can no longer be managed at this time due to Debbie's deteriorating condition. She is okay, but not improving. #LongCovid #MECFS #POTS
Phi @phi_psd
5K Followers 931 Following Australian/Greek/Cypriot nerdy visual designer, living in Berlin. 🇨🇾🇬🇷🇩🇪 end #prescribedharm #longcovid & #mecfs @berlinbuyers
Metrodora Foundation @MetrodoraFdtn
366 Followers 414 Following Catalyzing scientific collaboration and discovery to find cures for chronic, multisystem disorders.
@TheChronicCollaborat.. @TheChronicColab
4K Followers 2K Following A resistance movement for chronically ill & disabled people. Joining the dots between conditions. Resisting psychologisation. Fighting for justice & equality.
Megan Jayne Shepherd�.. @MJayne_21
1K Followers 2K Following Nature enthusiast🦋🐝🏞 BSc Environmental Conservation graduate. Living w/#MEcfs 16yrs. Aspiring conservationist, if illness allows it.
GC @ThePOTSPostman
5K Followers 1K Following Just a mailman with #POTS. Here to spread awareness and advocate for those with #dysautonomia #chronicillness
Solve ME/CFS Initiati.. @PlzSolveCFS
12K Followers 4K Following Making ME/CFS, Long Covid & post-infection diseases widely understood, diagnosable, & treatable. #SolveME #MECFS #LongCovid Donate @ https://t.co/84TBR9Fgzj
Nameandnumber @nameandnumber79
557 Followers 3K Following Doing my time on a matchbox. A most engrossing epistle.
Syd @fcknsyd
2K Followers 1K Following 24 year old who’s life is currently on pause because of #LongCovid since April 2022 #POTS #Dysautonomia #MECFS #hEDS @CadAgainstLC
Conor Browne @brownecfm
36K Followers 3K Following Biorisk consultant specialising in COVID-19 business continuity, forecasting / analysis.
Neurologist Mom @NeurologistMom
5K Followers 263 Following A neurologist, M.D. a mother of a 15-year-old girl with severe neuroCOVID/ME/CFS who has been managing her daughter's treatment at home since October2022
Szyzygy @Szyzygy2
1K Followers 2K Following Student of uncertainty, evidence, chronic illness, curiosity, and all things imperfect and perfectable. Attempting to live the 80/20 rule. Novid.
ME Research UK @MEResearchUK
5K Followers 10 Following ME Research UK is a charity which funds scientific (biomedical) investigation into the causes, consequences and treatment of ME/CFS (charity number SC036942)
Kate Garraway @kategarraway
525K Followers 1K Following Presenter on @GMB and @SmoothRadio.📚 https://t.co/OZiGHBOCFg
🌱 @GlimmerInAbsnce
1K Followers 110 Following #MECFS since 2010 - very severe since 2021 (Antibiotics). CG posts my drafts. really sorry if I do not respond - I just can’t most of the time. no Covid, no Vax
Daniel Lewis (but wit.. @dsethlewis
2K Followers 379 Following Hosting the Long COVID Hour, a weekly virtual public meeting for the #LongCovid community on Mondays at 7:30pm ET
Edna, M.E.Advocate �.. @EdnaMacNamara
699 Followers 1K Following 💙 M.E.Carer & Advocate of son aged 30, ME for 10yrs 💙. RaisingAwareness for #PwME. #Carers #LC #findAcureME
Sophie @themupsmuppet
502 Followers 194 Following M.E, myself & gibberish (also known as Dutch) #linksigdeugkneusje
Melissa Mazur @PhillyPhile215
2K Followers 3K Following Just a Philly girl, livin' in a lonely world…and a Luddite learning to Twitter. #LongCovid since March 2020 || Lawyer on Pause
Cambridge ME group @CBMEgroup
1K Followers 2K Following CBME is a support group based in #Cambridge UK for people with #MECFS, #MyalgicE , #CFS, #PostViralFatigue, #Fibromyalgia, including #pwME caused by #LongCovid
Fiona @Fionas_Story
1K Followers 1K Following Recovered from 25 years of severe pain, 14 years of M.E.🌟Passionate 🌟about the treatment of both. MSc in health psychology. Tweeting in a personal capacity
Vijay Iyer PhD @vijayiyer312
3K Followers 2K Following Patient advocating science for #mecfs & #dysautonomia (incl via #longcovid & #postvac).👷🏾♂️Support #neuroscience users & use cases of @MATLAB. Tweets my own.
NotRecovered @Not_Recovered
6K Followers 206 Following We share the stories of people who have #NotRecovered #LongCovid | #MECFS | #PostVac We fight internationally for research, treatment and recognition.
Joanna Gosling @joannagtweets
29K Followers 872 Following Mediator/Broadcaster/Writer. Senior Associate @irwinmitchell / Classic fm, Sundays 1-4pm https://t.co/iXAFQ7WJhM
Andrew Kirvin-Quamme @kq_andrew
196 Followers 373 Following Eventual Harvard Health Data Science MS student, current pwME. Interested in using ML algorithms to improve care for mental health, ME/CFS, and Long COVID.
M-SparCapital @Matt_Kolb_
6K Followers 6K Following Inst. Portfolio Manager with Concentrated Positions. Love the Spartans yet trading and investing is what excites me. Interested in PP opps Detroit vs Everybody
Nerd.cake @Nerdcake78
750 Followers 806 Following Good Omens obsessed. OFMD, LotR, WWDITS, MCU, Star Trek: Next Gen fan. 45 & somehow still alive. Pan. she/they 🔞 #gastroparesisawareness 😷
Two Margarets @The2Margarets
371 Followers 2K Following
Chris Wexler @ChrisWexler
1K Followers 2K Following Former CEO and Executive. Full time #LongCovid and #MECFS battler. Avoid Covid and slow down if you get infected. Don’t get Long Covid. Trust me!
K 🌻 @misshealing7
1K Followers 264 Following Severely injured by C-19 Infection since 2022 (no vax) THEY 🐍 poisoned me but I will not give up, God is with me ✝️
Lauren @covidslilbitch
214 Followers 367 Following Welp, excuse me, my brain is mush. Mainly here for this lovely community 💙🫡🌈 I’m here to learn, support, and get PEM from crying! #hEDS #SevereME
Nero @Nero70892040
589 Followers 582 Following ME/CFS since 2012 🎗 POTS , MCAS https://t.co/6NCuI0Qwoh
Claire 🧠🔥 #pwME.. @Naylor007
2K Followers 5K Following ME, FM, OH, MCAS, TMJ, OSA, DDD, TOS, hypothyroid stole too much from me. Doing everything I can to take back what's mine💪 I will do what i can to help others
Katie Johnstone @SockFoam
740 Followers 718 Following She/her. Chronically ill with ME. Founder of the ME/CFS Medical Education Campaign, blogger on Substack.
Lynda_Art_Write @Lynda_Art_Write
851 Followers 1K Following Writer/Artist,liver transplant ❤️Nature & NHS #CollapseAware I want to know all science http://subjects Green is the answer. #NMS Grandma in Space @LinShell_NMS
Amy Rochlin @amyrochlin
851 Followers 2K Following Executive Director, @MetrodoraFdtn - Proudly working to advance progress for patients living with chronic, multisystem disorders. Opinions are my own.
plague rat 🐀 @x3r0gxx
8K Followers 7K Following federation of plague rats against forced mass infection 🐀 🐀 🐀 🏴
Disabled Doctor @DisabledDoctor
9K Followers 849 Following PhD. Fired from a postdoc for being disabled. Filed w/EEOC August 2021 — still waiting. Gamer. Gardener. Clinician-Scientist. EDS. ADHD. CCI. 🏳️🌈
Benjamin Bikman @BenBikmanPhD
70K Followers 574 Following Endlessly fascinated by the scope of diseases caused by insulin resistance and what to do about it.
sophia•of•the•C.. @DSEDunn
2K Followers 5K Following Psych clinician (30yrs) practices: interpersonal neurobiology; rinzai zen. Death Shaman. Bi WOMAN 💜🤍💚🏳️🌈Lupus Warrior, LC @LeopardGizmo.bsky.social
daringshift @daringshift
2K Followers 1K Following Complexly chronically ill 2015-2023. Recently achieved full remission of symptoms. Hoping to help others do the same.
Katie As @ka_ashy
1K Followers 2K Following arty activist spirit, chronically ill, lesbian, she/her. UK. #LwiththeT @pwME I still don’t feel safe with any healthcare professionals @[email protected]
Ellie Fry @iEllieFry
3K Followers 1K Following Deputy Online Features Editor @DailyMirror | Previously @Independent | Contact: [email protected]
🇩🇰 Saga North @iamsaganorth
46K Followers 604 Following (+18 only) Exhibitionistic girl who loves to lift, make you laugh and travel! https://t.co/CQk6Rewv3Y
Joan McParland MBE-My.. @JoanMcparland
413 Followers 432 Following 1999 Sudden-onset virally induced, WHO classified Myalgic Encephalomyelitis - a multi-system chronic disease NOT tired/fatigued. Breakthrough Leader NICON2018
taffi. @empathadvocate
634 Followers 485 Following She/her. 28. Writer. Disabled/Chronically ill (LC, IST, seizures & more) Mobility aid user♿
Dan Elton @moreisdifferent
6K Followers 2K Following Problems are solvable - so let's solve some! Speak the truth, even if your voice shakes. Leave me anonymous feedback here: https://t.co/LQ5eZWwDst
Existential Bread @exist_bread
750 Followers 1K Following Mostly stuff about chronic illness, data, and Oxford commas.
Dr Jenny Ceolta-Smith.. @JCeoltaSmith
3K Followers 3K Following Not always X active & #NotWorkingWithLongCovid #OT PhD activist & advocate on health, well-being, welfare and work #LongCovid #FBLC #DWP +at:@WorkingWithLCI’ve recovered enough to sit up for a few hours with my babies! MRI tomorrow
Saying "excercise is important" to someone (bedbound) with #MEcfs or some other illnesses/disabilities is as pointless as saying "eating vegetables is important" to someone lost in the desert. We can't + it isn't the thing that's going to make the difference. We need other help.
@paulthedaid @dutchlauren @ChronicMyalgicE @dievandinges @guustweet Yes, and it feels both longer and shorter. Time is a strange thing. 😞💙
Note to self: Do not even THINK about uttering the words “I think I’m back to baseline and/or I’m out of my crash” because the PEM beast is always lurking and as soon as it hears those words the dark veil of PEM WILL, I repeat WILL descend over you the next day. F this ILLNESS!!!
@dsethlewis @ahandvanish Oh, there seems to be something in my eye 🥹
@paulthedaid That’s DREADFUL. Have you continued to have seizures this while time and they’ve ignored you!?
@paulthedaid Disgraceful!
@paulthedaid It doesn’t bode well for them actually bothering to test for MS as well. This will be why my GP won’t put ME on my record. She said it isn’t a good idea.
@paulthedaid That is absolutely ridiculous. And total discrimination against someone with ME once again.
@paulthedaid I was referred to Endocrinology well over 10 years ago. Nothing. Not even a letter. The GP said they were putting me on the long finger because they didn't know what was wrong with me. Especially difficult as they've never seen me. 🤦♀️ Health Service, Ireland.
@paulthedaid If you are in the UK contact PALS. They have been brilliant with me and got me appointments when they had dropped me off the list
@Mary2bOptim @paulthedaid An insult is right. Over here about half the population have private healthcare & they're first in the queue. I don't have private healthcare and I'm a middle aged woman with weird health issues. So bottom of the heap for me.
One of those days where I just really miss exercise. I miss when my muscles ached from effort, not from disuse. I miss the endorphins from a workout. I miss being sweaty from exertion and not from PEM. I was never one of those people who had to drag themselves to the gym — I…
It’s the greatest medical scandal of the 21st Century. Intransigent doctors and gullible journalists have made the lives of ME/CFS patients a living hell. A massive and shocking story in this week’s column. theguardian.com/commentisfree/…
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