Whitney Dafoe @DafoeWhitney
Severe ME/CFS patient and advocate. Photographer, filmmaker, artist, creative. Sick since 2004, bedridden since 2013. Never. Giving. Up. ✊ lnk.bio/whitneydafoe Stanford, CA Joined December 2019-
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@elonmusk Please read this urgent plea for help. You have the opportunity to save the lives of millions of profoundly suffering people and lead the way to the biggest medical breakthrough of the century. My name is Whitney Dafoe and I have severe ME/CFS, short for Myalgic…
I love this analogy about pacing for severe #mecfs and #LongCovid patients. ❤️
I love this analogy about pacing for severe #mecfs and #LongCovid patients. ❤️
***we need help with caretaking overnight tonight into tomorrow morning!!!*** we have a hotel, someone can be here until around 8pm i have to leave today at 12 pm, i can be back tomorrow to help with transportation, but we need someone COVID conscious overnight from at least 8pm!
***we need help with caretaking overnight tonight into tomorrow morning!!!*** we have a hotel, someone can be here until around 8pm i have to leave today at 12 pm, i can be back tomorrow to help with transportation, but we need someone COVID conscious overnight from at least 8pm!
🚨ATTENTION: URGENT MUTUAL AID NEEDED🚨 UNHOUSED SEVERE #LongCovid/#pwME IN NY Discharged from hospital & another hospital would not admit despite being 69 lbs on presentation to ED They are in a hotel now but desperately NEED support cashapp $softbbyboy paypal hopestarmasacre
🚨ATTENTION: URGENT MUTUAL AID NEEDED🚨 UNHOUSED SEVERE #LongCovid/#pwME IN NY Discharged from hospital & another hospital would not admit despite being 69 lbs on presentation to ED They are in a hotel now but desperately NEED support cashapp $softbbyboy paypal hopestarmasacre https://t.co/nAKxm8n5zt
When Does Self Care Become Harmful? I’m desperate to feel better. I would do *anything* to feel better and I spend an enormous amount of energy following routines and taking medications and supplements to try to get better. This desperation to get better is something we all…
Please share urgent fundraiser for a ME/CFS patient in need ❤️
Please share urgent fundraiser for a ME/CFS patient in need ❤️
@aftab_usa This is just because you likely paid no attention to (or worse ignored & dismissed) the existence of infection associated chronic illnesses for your whole career until now. Please acknowledge this. Diseases like ME/CFS & POTS are also triggered by flu. You just didn’t see it.
I worry that #MedTwitter see our cries for help & better care, & our reports of harms under medical care as attacks on them. But they’re cries for help, for better treatment & medical services. We don’t want to have to fear mistreatment any longer 😪 #MyalgicEncephalomyelitis
@PammckC things heal. cells renew. we see evidence of healing everywhere. when the foot is taken off the pedal the car slows (it just takes some time). there are few types of damage in the human body that are truly permanent and most of these need to progress to 'end-stage' before they…
Toolkit for Carla’s Twitter storm on Thursday! Huge thanks to @fionarh289 for putting this together using the one I made for Millie, I’m severe & pretty burnt out but the community comes together! Pls suggest edits in the comments 👇 #SaveCarlasLife docs.google.com/document/d/1Ny…
On X: Dr says someone should at least try graded exercise... Every #pwme I know tried to maintain their life, I volunteered, gardened, shopped, walked my dog, studied, self employed. I'd say it was very graded exercise... Not at gym. I got sicker and sicker and sicker.
Falsely psychologising patients with Severe #MyalgicEncephalomyelitis has to stop. “Carla has repeatedly lost consciousness & is now having seizure-like events. The hospital have been ignoring these for five days” This is NOT care. #SaveCarlasLife #ExposeMENow #MedTwitter
Falsely psychologising patients with Severe #MyalgicEncephalomyelitis has to stop. “Carla has repeatedly lost consciousness & is now having seizure-like events. The hospital have been ignoring these for five days” This is NOT care. #SaveCarlasLife #ExposeMENow #MedTwitter
A reminder, or heads up, to people with #LongCovid who experience PEM (which is c. 50% or so)... The Long Covid research field as a whole is *not* currently representing you properly! Only 0.44% of papers mentioning LC last year also mentioned PEM (red) The fastest way to…
Feel a bit better Get so excited about life I can’t sleep Feel worse #mecfs #SevereMECFS #pwME #LongCovid
Alt text for the ME/CFS severity scale I wrote. Thank you @edjimimi for writing the alt text. Brilliant. 🙏 Note that I wrote this scale, it is was then edited and a graphic designer made this graphic and a team of researchers conducted the accompanying study.
Alt text for the ME/CFS severity scale I wrote. Thank you @edjimimi for writing the alt text. Brilliant. 🙏 Note that I wrote this scale, it is was then edited and a graphic designer made this graphic and a team of researchers conducted the accompanying study.
New Severity Scale for ME/CFS I wrote this new severity scale for ME/CFS about 2 years ago. I really wanted to express how severe the illness can actually get which is not at all reflected in our current mild-moderate-severe-v.severe scale. And I wanted to make it more…
Ppl without LC MECFS explaining suicide of ppl with severe MECFS LC are about other things There are likely contributors but @elle_carnitine @DafoeWhitney and I have all talked extensively about suicidality in this community Please don’t underplay it, it’s not your community
Ppl without LC MECFS explaining suicide of ppl with severe MECFS LC are about other things There are likely contributors but @elle_carnitine @DafoeWhitney and I have all talked extensively about suicidality in this community Please don’t underplay it, it’s not your community
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...
ME/CFS News @MECFSNews
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Anil van der Zee © @AnilvanderZee
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Tom Kindlon @TomKindlon
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Christoph Ströck @cstroeckw
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Martin Hippe @pausedME
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Dan Wyke 🦠➡️�.. @Dan_Wyke
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Sten Helmfrid 🇺�.. @StenHelmfrid
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davidtuller @davidtuller1
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Lizzy H @hopefullizzy
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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
Agy Lena 🏳️�.. @agy_lena
9K Followers 291 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
Open Medicine Foundat.. @OpenMedF
14K Followers 1K Following OMF is fundraising to support open, collaborative research to find effective treatments and diagnostic markers for ME/CFS, Long COVID, and related diseases.
Wading through treacl.. @kimisgubbed
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Billy Hanlon @bhanlon15
12K Followers 11K Following Director of Advocacy & Outreach, Minnesota ME/CFS Alliance | Long COVID Ally
Dr Asad Khan FRCP FRA.. @doctorasadkhan
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Naomi Harvey PhD #Wea.. @Naomi_D_Harvey
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Dr. Daniel Loy @loy_daniel_de
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Putrino Lab @PutrinoLab
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Desperate to Be Well @CyndiWhatif
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Brandon Kelly @Brandon_500
97 Followers 2K Following Thank to my fundraising expert team who help me with my campaign to reach his goal in a short period of time
Coucou c'est Pipou !! @c_pipou
264 Followers 3K Following RT/abonnements/abonnés ne signifient pas que je sois forcément d'accord "Donnez un cheval à celui qui dit la vérité, il en aura besoin pr s'enfuir"
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Devin Lane 🎸 @DevinCLane
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Dan @DanB77777
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Fab Frank @LockedFab
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grenouille @patte_2020
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JC14081229 @jc14081229
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Barbara+barbaralccare.. @egervasics2
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Ken Torres @HospitalityTek
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Le duup @ClementDup50586
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EstherMaria - @esther_1010
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Tracey @Tray_c99
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K @kammiri
414 Followers 2K Following UXR | Social R | #NEISvoid ~ I have a thing for animals with opposable thumbs.
Nicholas Carlton @nickcarlton
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Is it over yet? @klArtofLiving
232 Followers 1K Following Human, hoping the country is still here tomorrow.
Lachlan Skinner @skinner_lachlan
20 Followers 66 Following Former scene kid and physiotherapist - now I have severe ME from long covid
Books, Life and Every.. @BooksAndLife1
707 Followers 1K Following Join me in my love for books, life and more 💜 #BookBlogger #NiceLife 💜 https://t.co/SR0LKkOPKJ 💜
Danielle Beckman @DaniBeckman
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g @masking4it
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Maggie Mahanes @schmaggers97
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Kaz @Kazimierz_J
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mrs.anreitter alias K.. @karlakueken
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One of the Millions M.. @_Loveless225_
6 Followers 60 Following Statt schöne Erfahrungen im Leben, Schäden durch Behörden wg. verweigerter Hilfe zeigen (🔁🙏). Ich will endlich leben! 💔 Seit 19 Jahren #MECFS u mehr immer↘️
RIIPP MCCULOUGH 🇺�.. @ishaminafanin
731 Followers 862 Following Military Vet / FlyNavy- Commodities Speculator. PM’s ,Copper, URANIUM
Ant @Ant4444444
4 Followers 102 Following
Chris Overmyer @ChrisOvermyerNV
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LivingWithLC @EtteParadise
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Caro4💙💙💙 @caro4syt
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Wilma Boessenkool @Wilma273
24 Followers 32 Following vrouw, moeder, dochter, vriendin en ook nog MEzelf; dat is wie ik ben.
trueblueFL @FlTrueblue
72 Followers 132 Following ME+Fibro+lupus,20+yr chronic illness survivor Jerseygirl❤GoRu🪓,Trekkie & sci-fi fan🖖 Reality TV connoisseur💋🌴 🇦🇲🇱🇧🐾💗 #missingmillions 💙
Jables @jaebles23
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Speedtrial @Sp33dtrial5
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Mark Wright @markeology
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269 Followers 985 Following Disabled Veteran, Suffering with MS,Newcastle United Supporter, Original Skinhead, Loving husband, father and dog lover.
CassAsh @CassAsh264
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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...
Anil van der Zee © @AnilvanderZee
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Dan Wyke 🦠➡️�.. @Dan_Wyke
13K Followers 6K Following M.E. patient, advocate, person-centred counsellor (see link), recovering poet
Agy Lena 🏳️�.. @agy_lena
9K Followers 291 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
Open Medicine Foundat.. @OpenMedF
14K Followers 1K Following OMF is fundraising to support open, collaborative research to find effective treatments and diagnostic markers for ME/CFS, Long COVID, and related diseases.
Naomi Harvey PhD #Wea.. @Naomi_D_Harvey
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Jennifer Brea🦒 @jenbrea
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Ben H @benh_mecfs
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fereshteh jahanbani @fereshtehjahan1
1K Followers 72 Following PharmD/PhD in Pharmacology, Co founder and CSO, RTTP at Stanford, Director of Genomics and Leader of "ME/CFS related disorders" Multi-omics study at SCGPM.
Elizabeth Warren @SenWarren
6.9M Followers 508 Following U.S. Senator, Massachusetts. She/her/hers. Official Senate account.
Max Nits @MaxNits
318 Followers 339 Following Physics grad, programmer, entrepreneur. Life on pause due to ME/CFS.
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.🌼
Andrea Fighting for #.. @MECFSNanoneedle
937 Followers 3K Following Severe #MECFS Patient Bedridden. No energy to speak. #MECFSBiomarkers #FckTheNIH she/her I am #MECFS Diagnostic Biomarkers' biggest fan!
The Real M.E. 👩.. @therealmecfs
1K Followers 676 Following Chronically ill and disabled person with lots of personal opinions who sometimes likes a hat. That is all. She/her/it. oh and on the spectrum apparently.
Jaimie 💙 @LiminalME2022
361 Followers 280 Following Writing, nature, kindness, compassion, integrity. Transpersonal Psychotherapist/Clinical Hypnotherapist & multi disciplinary clinic owner in another life
sarah swastrosarah.bs.. @swastrosarah
2K Followers 876 Following speaking up for everyone affected by severe/very severe #ME. My daughter, my only child, died from ME Oct 2021. Inquest opened. Full hearings expected July 2024
Cat Herding Science N.. @catladyactivist
18K Followers 11K Following Plant-fueled 🌱 religion-free 🕊 healthcare for all ⚕️ leave it better than you found it 🌏 equity in all things ⚖️ #CovidIsAIRBORNE 😷
Woozle @WiredWoozle
119 Followers 1 Following The more we get sick, the sicker we shall be. ❤️everyone, 🚫obstinate bullying | #pwME | Not seeking followers
Prof Gemma Carey, PhD.. @gemcarey
26K Followers 2K Following Public admin, social policy, public health. Lots of NDIS @UNSW. PROVAX, vax injured - in severe ME recovery. (And non aca-author). Views are my own
Julie Houston @JulesAHouston
2K Followers 2K Following Body malfunctioning since 1998. MECFS PoTS MCAS hypermobility. #LongCovid #LongCovidKids #Pans #Pandas ally. #CleanAirForAll #MasksInHealthcare
emily fraser 🌿🐌.. @emilyesfraser
5K Followers 4K Following Former doc filmmaker/cinematographer/teacher, current full-time sick person, occasional poet
Lauren ✨ @dutchlauren
10K Followers 294 Following 28. Stay-at-home cat parent. Ex-YouTuber and book blogger. #ActuallyAutistic & severe ME. Passed away January 27, 2024 🖤 Media enquiries: [email protected]
ddHiFi @ddhifi_com
2K Followers 161 Following We make cool items (audio adapter, DAC Amp, data cable, carrying case, earphones and accessories, etc) for audiophiles. Contact us at [email protected].
Elizabeth Weaver II �.. @NeuroWeaverATL
2K Followers 647 Following B L U E S K Y same handle as above / GSU Brains & Behavior AD / NeuWriteATL / Disability Advocate /•MECFS•/40👇40/ Researcher:“The Long Haul” / *my views*🏳️🌈
E𝚕𝚢𝚜𝚎 K�.. @elysekiera
1K Followers 227 Following S𝚎𝚟𝚎𝚛𝚎 𝙻𝚢𝚖𝚎 & 𝙼.𝙴., 𝚋𝚎𝚍𝚛𝚒𝚍𝚍𝚎𝚗 & 𝚑𝚘𝚞𝚜𝚎𝚋𝚘𝚞𝚗𝚍 𝚏𝚘𝚛 𝚘𝚟𝚎𝚛 𝚊 𝚍𝚎𝚌𝚊𝚍𝚎. A𝓇𝓉𝒾𝓈𝓉 ❀
Thane Black @thane_black
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Van Jones @VanJones68
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Mike S @MichaelSpurrie3
137 Followers 387 Following CFS/ME Pandas/Pans IIH Jugular compression Chronic Headache Persistent neurological lyme disease Noticed symptoms at age 11 now 30 Sci-Fi Lover RPG gamer
The Late Show @colbertlateshow
1.1M Followers 2K Following The #1 show in late night is BACK with all-new episodes! Watch #Colbert on @CBS & @ParamountPlus at 11:35/10:35c.
Jamison Hill @NotTheWhiskey
36K Followers 29K Following No, not like the whiskey | Writer | Bylines: @NYTimes @LATimes @WashingtonPost | Disability & Chronic illness (#MECFS #Lyme) Advocate
Jon Stewart @jonstewart
1.7M Followers 2 Following
Ashley Haugen @AshleyHaugen88
977 Followers 59 Following Sister to #MECFS hero, @DafoeWhitney, Daughter to Ron Davis and @JanetDafoe. Fighting to #endMECFS
@Claudia42619848 @doyouseem_e_now Oh Claudia buddy, it’s been proven that increasing activity does not treat ME. Otherwise, we would all be cured. To increase activity past your baseline causes PEM otherwise you don’t have ME
@doyouseem_e_now Gradually increasing activity…?
@doyouseem_e_now @DafoeWhitney Here ya go mate Some great hope from our instagram friends (A Joke) 😭
@norrlands_gull @elonmusk Thank you! I didn’t understand why it wasn’t showing in my profile. 🙏❤️
@DafoeWhitney @elonmusk Also, @mayemusk this is our cry for help. Millions of people with #MECFS need urgent scientific research action. You wrote a book "A woman makes a plan" - now it's time for a new plan: to save people with ME/CFS! Please help us be heard! 🌱
@DafoeWhitney @geoffers1967 @elonmusk Thank you for writing this letter to @elonmusk I sincerely hope that this will motivate him to become involved in this essential research work, that will ultimately help the world economy.
@DafoeWhitney @elonmusk If not Elon then maybe @iamharaldur? CDC estimates that 1.3% of the population has ME. If that is true for Iceland then we are ~5000. That is more people than all residents of Grindavik. I know you get so many requests for money but I hope this one reaches you 🤍
@DafoeWhitney @elonmusk Dear @RayDalio This could be a great post to read from someone with severe ME/CFS, to see the incredible scientific & medical legacy you could leave with philanthropy for this disease. ME/CFS, including the millions of cases triggered by Long Covid, has no care for class,…
@DafoeWhitney @elonmusk FUND #MECFS #LongCovid #Postvac! 100.000.000+ people suffering worldwide!
@DafoeWhitney @elonmusk Thank you, Whitney. @elonmusk please support the much needed funding for research into this complex, devastating illness.
@DafoeWhitney @elonmusk I’m another one of those sufferers, Elon. A regular guy before I became severely ill & bedridden w/ ME/CFS, a forgotten illness as I dubbed it in a Medium post today. Whitney & all 24+ million of us deserve a treatment. No approved treatment currently. swearymommy.com/a-forgotten-il…
@DafoeWhitney @Amludude @elonmusk It needs a moon shot. And it’s doable.
@DafoeWhitney @AmbrosineShitr2 @elonmusk I can feel with you😟,, our prayers with you 🙏
@DafoeWhitney @elonmusk @elonmusk necesitamos investigación para esta enfermedad “invisible”
@DafoeWhitney @elonmusk @jordanbpeterson @MikhailaFuller please help us connect this plea with @elonmusk. This illness is hell on the face of the earth and we need help.
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