Tilman Andris @TilmanAndris
Philosophy graduate | former science event organiser | former performance artist | ‘former’ and ‘ex’ at most of everything due to #MEcfs tilmanandris.com Leiden, The Netherlands Joined May 2018-
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#LongCovid 🦠 NIEUWS! 🦠 OVER DE DE 15.000 REGELING ✅ kijk aan, de regeling wordt - eindelijk - uitgebreid ✅ het bedrag wordt verhoogd naar 24.010 ✅ en de groep zorgmedewerkers die in aanmerking komt wordt verruimd met diegenen die tussen 1 juli en 31 december 2020 zijn…
DON'T. LOOK. AWAY. #SaveCarlasLife #MEAwarenessHour
DON'T. LOOK. AWAY. #SaveCarlasLife #MEAwarenessHour
DON'T. LOOK. AWAY. #SaveCarlasLife #MEAwarenessHour Please meet Pierre, Carla's father. We cannot overstate how distraught he is by what is happening to his daughter. However, he wanted to speak to everyone directly. Please watch & share widely. She is running out of time 💚
🔻🔻🔻Please listen to all of us 🔻🔻🔻we are bedbound and housebound and can’t travel to protest to help one of our number so this #MEAwarenessHour @BBCr4today #SaveCarlasLife please if you only share one post this evening make it this one You might help save more than one life
🔻🔻🔻Please listen to all of us 🔻🔻🔻we are bedbound and housebound and can’t travel to protest to help one of our number so this #MEAwarenessHour @BBCr4today #SaveCarlasLife please if you only share one post this evening make it this one You might help save more than one life
On Monday, another beloved patient, Loes Talma, passed away. Her request for euthanasia was granted and she left this world after a long sick bed. She'll be sorely missed. #MEawarenessHour 🕯️ …centraal-wordpress-com.translate.goog/2024/04/23/loe… 🕯️ youtube.com/watch?v=HtnZS7… (please switch English subtitles on)
Carla needs care, now. Listen to her father, Pierre. #StopTheHarm #meawarenesshour #SaveCarlasLife #ExposeMEnow #severeME #MillionsMissing #MEcfs #LongCovid
Carla needs care, now. Listen to her father, Pierre. #StopTheHarm #meawarenesshour #SaveCarlasLife #ExposeMEnow #severeME #MillionsMissing #MEcfs #LongCovid
Patients with #MECFS cannot reproduce their parameters in repeated CPET tests, but did you know that there is other objective evidence for post-exertional malaise? The gene expression, for example, shows a significantly different response than in controls. #MEAwarenessHour
Would like to see this conceptual shift more broadly - PEM is not a symptom, but a physiological state where a *lot* is going wrong; many symptoms can be part of that PEM state. #longcovid
Would like to see this conceptual shift more broadly - PEM is not a symptom, but a physiological state where a *lot* is going wrong; many symptoms can be part of that PEM state. #longcovid
Update about Millie - 22/04/24 Petition change.org/p/save-millie-… #MillieSevereME #SevereME #pwME #saveMillie #BringMillieHome #DontLetMEDie #ExposeMENow
In 1993 my ME/CFS was so severe that I sometimes had difficulty chewing and swallowing due to dysfunction in the muscles involved. I also couldn’t sit, speak, move in bed or lift a spoon to my mouth for the same reasons. 🧵 #SaveCarlasLife #ExposeMENow #BringMillieHome
Section 1.17 of the UK @NICEComms guidelines on #MECFS have very clear recommendations for caring for people with #SevereME, including low-stimulus environments. Yet in the UK and abroad these recommendations are ignored, causing untold suffering. #SaveCarlasLife #ExposeMENow
CW: distressing, triggering This has absolutely broken my heart. This is EXACTLY what they did to me. The first line in any medic training is Do No Harm. This is torturing Carla. This MUST stop. #SaveCarlasLife #ExposeMENow
CW: distressing, triggering This has absolutely broken my heart. This is EXACTLY what they did to me. The first line in any medic training is Do No Harm. This is torturing Carla. This MUST stop. #SaveCarlasLife #ExposeMENow
I should be resting but I’m here protesting. 23-year-old Carla is experiencing medical abuse at West Middlesex Hospital. She has #severeME. We demand that staff follow NICE guidelines for ME now. #SaveCarlasLife #ExposeMENow
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.
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
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
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.
Dan Wyke 🦠➡️�.. @Dan_Wyke
13K Followers 6K Following M.E. patient, advocate, person-centred counsellor (see link), recovering poet
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]
Jonas R. Kunst (@kuns.. @KunstJonas
17K Followers 723 Following Professor of Psychology @UniOslo. Past @Yale @Harvard @UiB. Founder @Advances1n. Father. Views are my own. @kunstjonas.bsky.social @[email protected]
Dr. Daniel Loy @loy_daniel_de
6K Followers 1K Following Ehemann, Jurist. #MECFS. Team #SIGNforMECFS. Team #GOfundMECFS. One of the #MillionsMissing.
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
Billy Hanlon @bhanlon15
12K Followers 11K Following Director of Advocacy & Outreach, Minnesota ME/CFS Alliance | Long COVID Ally
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.
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.
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.
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✨
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
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
Bettina Grande @GrandeBettina
7K Followers 1K Following Psychologische Psychotherapeutin, Praxis in Heidelberg. Aktiv in Aufklärung über und gegen die Psychologisierung von #MECFS. #PEM ist nicht verhandelbar!
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
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
Birgit Gustke @BeeGee26168032
2K Followers 812 Following Aktiv für mehr #MECFS #Information, Forschung, Fortbildung, Menschen mit ME/CFS #LongCovid #PostVAC #MCAS #POTS #FatigatioeV Hessen bgustke@[email protected]
Martje de Voogd @vrijezangvogel
808 Followers 1K Following thuis in zang, adem en beweging. #zangles #sopraan #vocalcoach #evt #mensendieck #mindfulsinging
Marina Kooren @ParelBiser
62 Followers 196 Following #pwME #MEcfs homebound and largely bedbound with an energy-depleted body and totally done with medical gaslighting #StopMedicalGaslighting
Be Kho @BeKhoNL
753 Followers 988 Following psychologist / life on hold since summer 2021 / Long Covid/ @[email protected]
Repelsteeltje @Ballennet
394 Followers 1K Following ‘I wish to hear the silence of the night, for the silence is something positive and to be heard’. H.D. Thoreau
Claire Hirst @claire_hir24347
18 Followers 108 Following Raising awareness and charting my journey with ME/CFS
Susan @susanhe12244935
872 Followers 3K Following
#FreeAssange @fascismcantwin
273 Followers 1K Following My body is materially disabled. MECFS, EDS, & more.
Viola Esmiol @esm_viol
11 Followers 2K Following
Elvia Swallow @ElviaSwall86966
77 Followers 5K Following
Loren Farnam @farn_lore
97 Followers 5K Following
Hannie van Hoof @HannieHoof
154 Followers 1K Following
Chanel Atala @AtalaChane20518
63 Followers 5K Following
cara @athingtoflout
90 Followers 2K Following chronic pain person/anti-eugenics ❤️🔥 behold our end, which is no end 👁
Paul #LongCovid #prot.. @TOM88HK
322 Followers 1K Following Inf.over SARS COV2 het is geen GRIEP & andere actuele onderwerpen.#Kinderrechten STOP MEDISCHE DISCRIMINATIE Kan niet tegen onrecht. Komt op voor kinderrechten.
Marian Vink @vink_marian
4 Followers 174 Following
Linzi @linzi_mcintosh
347 Followers 4K Following Mother of multiple disabilities including Hypermobility, fibromyalgia, to mention a few. All daughter health struggles. EDS. Autism. Gillian Barre' syndrome
Bilge Cetin @CetinBilge
130 Followers 595 Following Living in the Netherlands. I have ME since 2019. I am mostly using twitter to connect with the ME folks and researchers. tweets in english, dutch and turkish
Harry van Gerven @drenrettiwt
250 Followers 891 Following @drenrettiwt.bsky.social Born @ 335.42 ppm CO2 #LongCovid
stef @bjurlks
84 Followers 456 Following voormalig theatertechnica. student rouwbegeleiding. life on hold. #lyme #lc #pots
Pascal030 @Pascalgrootveld
976 Followers 1K Following voormalig Orthopedagoog-Generalist i.o (former special educationalist/psychologist). Voorzitter vereniging @longcovidnl [email protected]
Michael Alexander @Michaeltikus
955 Followers 2K Following I like animals 🐙 Zoology/Psych PG interested in nature connections, diving and tapirs. Member @Long_Covid / @RenegadeRes Lead contributor @wecrunchme LC-PLAN
Athena Belisle @AthenBeli
35 Followers 5K Following
N.Crawford 🐈⬛.. @Caitshith
288 Followers 1K Following eco-socialist. disabled with moderate viral ME, neurodivergent with adhd + autism.
Polly Atkin @pollyrowena
7K Followers 4K Following Writer, Lake-swimmer, Bookseller FRSL hEDS/Haemochromatosis/+ she/her rep @PortyLiterary Much with Body; Recovering Dorothy (2021) Some Of Us Just Fall (2023)
Alexandra Diesen @AlexandraD31093
75 Followers 5K Following
Ciara Casario @casari_ciar
51 Followers 5K Following
Cristian Serious @CristianSerious
297 Followers 2K Following Sharing my personal journey of navigating life with Chronic Fatigue Syndrome, CCI/AAI, and TC. #cci #mcas #mecfs #mespine
Renate-new account�.. @Renate834601
79 Followers 401 Following Myalgic Encephalomyelitis since -87,severeME,Bedbound, diagnosecriteria /name matters!separate ME from ME/cfs; use ICC -G93.3 for ME❤️#Enterovirus
goldynw @goldynw1
417 Followers 2K Following #storyteller comms | comms | comms #influencingthroughstories #imagesthatwork #goldynw1 #goldyconversations Ian Clowes [email protected]
Mireille Heebner @MireillH
86 Followers 5K Following
Katie Turner @Turner12341
141 Followers 414 Following
Sonia Cones @son_cones
56 Followers 5K Following
Cheri @mamahaugen
45 Followers 528 Following
Myra @Gooische_Vrouw
4K Followers 5K Following Economist, former business woman, life on hold, advocate for #ME #MECFS #LYME #LongCovid. Kijk voor meer info: https://t.co/7lgJ73O8Ve
Mia Hellar @HellarMia14817
86 Followers 5K Following
Tante @TantetanteTruus
294 Followers 1K Following Levende rouw, de helft van mijn gezin heeft longcovid, breien, anoniem maar oprecht. in Friesland ben ik thuis.
Melissa RN 818 @818_rn
146 Followers 921 Following mom,RN,dog owner, currently battling with #longcovid #Trump2024
Pat Casola @p_casola
46 Followers 564 Following
sharon askew @88888888881
81 Followers 1K Following
Krysten Corbell @KrystCorbell
52 Followers 5K Following
Ted Foxx @TedFoxx238985
196 Followers 3K Following #cancersucks Constantly searching for help for cancer patients.
#NotJustFatigue @njfatigue
563 Followers 624 Following We are a 501(c)(3) sounding the alarm on ME/CFS through digestible, creative content. This is #NotJustFatigue
Henry Gavin @ga_henr
16 Followers 2K Following
Paul Telford @jt10661815
42 Followers 2K Following Cognitive impairment means I won't tweet much, but enjoy reading.
Allegra Mosha @allegr_mosh
37 Followers 5K Following
יוסי פרס @Yosiperes
206 Followers 2K Following
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.
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...
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
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.
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
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
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.
Dan Wyke 🦠➡️�.. @Dan_Wyke
13K Followers 6K Following M.E. patient, advocate, person-centred counsellor (see link), recovering poet
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]
Jonas R. Kunst (@kuns.. @KunstJonas
17K Followers 723 Following Professor of Psychology @UniOslo. Past @Yale @Harvard @UiB. Founder @Advances1n. Father. Views are my own. @kunstjonas.bsky.social @[email protected]
Tom Kindlon @TomKindlon
14K Followers 577 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
Dr. Daniel Loy @loy_daniel_de
6K Followers 1K Following Ehemann, Jurist. #MECFS. Team #SIGNforMECFS. Team #GOfundMECFS. One of the #MillionsMissing.
Martin Hippe @pausedME
7K Followers 471 Following East Westphalia by Nature ⎮Lawyer by Profession | #Musikrecht | #MECFS | @Mirame_Arts | No medical advice!
Carmen Scheibenbogen @C_Scheibenbogen
12K Followers 62 Following Immunologist and ME/CFS researcher MD @ChariteBerlin
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
Billy Hanlon @bhanlon15
12K Followers 11K Following Director of Advocacy & Outreach, Minnesota ME/CFS Alliance | Long COVID Ally
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.
Michael Stingl @neurostingl
16K Followers 1K Following Facharzt für Neurologie ME/CFS ▪ Long Covid ▪ Nervenultraschall ▪ ENG/EMG ▪ Hirngesundheit ▪ Telemedizin
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.
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.
Prof Brendan Crabb @BrendanCrabbAC
2K Followers 95 Following Director & CEO @BurnetInstitute - Also owner of @CrabbBrendan but inadvertently locked myself out and can't get back in. So this is where I'll be!
Prof Brendan Crabb @CrabbBrendan
31K Followers 1K Following Medical researcher & Director & CEO @BurnetInstitute & Chair @ausglobalhealth & @PacificFriends | also @BrendanCrabbAC & https://t.co/5BaDvLZ2Tw
Marc Reuter @Mrc7Rtr8
74 Followers 45 Following
Martin @tintal1971
2K Followers 186 Following Depressieve dierenvriend die z'n best doet om zo normaal mogelijk te functioneren Heeft momenteel een Esketamine behandeling Harde zwarte humor,bot & direct😇
Angela Vink @L_AngelaVink
79 Followers 179 Following
Elwin Bos @ElwinBos
155 Followers 51 Following
Fallen One, with A La.. @OneFallenAngelM
9K Followers 851 Following Former MANP (MSc) ~ Primum Non Nocere ~ Survivor of Medical Malpractice ~ Using & Growing #Cannabis for IntractablePain, PainManagement, FullBodyCRPSII, StageIV
HBopweg @HBopweg
2K Followers 5K Following Sappho van der Wegen coach voor (hoog)begaafde jongeren, jongvolwassenen regio Den Haag. Docent Engels. #giftedness #autism #teacher #English #books
Martje de Voogd @vrijezangvogel
808 Followers 1K Following thuis in zang, adem en beweging. #zangles #sopraan #vocalcoach #evt #mensendieck #mindfulsinging
Sabine @__Sabs
187 Followers 136 Following Professioneel bankzitter 🥄 | Egel enthusiast 🦔 | voorouderuitpluizer 📜 | leest dingen voor het slapengaan 📚| [email protected]
onbekend @danoontje100
27 Followers 157 Following
Marina Kooren @ParelBiser
62 Followers 196 Following #pwME #MEcfs homebound and largely bedbound with an energy-depleted body and totally done with medical gaslighting #StopMedicalGaslighting
Repelsteeltje @Ballennet
394 Followers 1K Following ‘I wish to hear the silence of the night, for the silence is something positive and to be heard’. H.D. Thoreau
Tiff-Annie @Tiff__Annie_
737 Followers 996 Following Prof. Faculté de médecine | Médecine sociale & préventive +Sports betting/analytics
Litalist @LitalistBooks
2K Followers 5K Following Recommend your favourite books, discover new ones and then shop for them from local independent bookshops.
Kelly @broadwaybabyto
12K Followers 2K Following Disabled & chronically ill writer. Former theatre critic. Clean air is a human right & vulnerable people aren’t expendable. Covid is airborne 😷 #SpacesHost
Anna K. @AnnaK41412147
401 Followers 421 Following Post-Covid-19-ME/CFS erkrankt, in der Pandemie alles gegeben, nun hängengelassen/ignoriert/vergessen, Bell 10, PG3, GdB 100 MZ aG,G,B,H,RF
E ❀ @farbeyondtired
361 Followers 262 Following Severe ME for 13 years, hEDS and co• 26y/o • somewhere to share my thoughts when I have enough energy/brain power to do so.
Renate-new account�.. @Renate834601
79 Followers 401 Following Myalgic Encephalomyelitis since -87,severeME,Bedbound, diagnosecriteria /name matters!separate ME from ME/cfs; use ICC -G93.3 for ME❤️#Enterovirus
Cristian Serious @CristianSerious
297 Followers 2K Following Sharing my personal journey of navigating life with Chronic Fatigue Syndrome, CCI/AAI, and TC. #cci #mcas #mecfs #mespine
stef @bjurlks
84 Followers 456 Following voormalig theatertechnica. student rouwbegeleiding. life on hold. #lyme #lc #pots
Bilge Cetin @CetinBilge
130 Followers 595 Following Living in the Netherlands. I have ME since 2019. I am mostly using twitter to connect with the ME folks and researchers. tweets in english, dutch and turkish
LeendertB @b_leendert
54 Followers 116 Following 26 | verpleegkundige | palliatieve zorg | WIA | Long Covid
Marian Vink @vink_marian
4 Followers 174 Following
Harry van Gerven @drenrettiwt
250 Followers 891 Following @drenrettiwt.bsky.social Born @ 335.42 ppm CO2 #LongCovid
Claire Hirst @claire_hir24347
18 Followers 108 Following Raising awareness and charting my journey with ME/CFS
Kathryn Hoffmann @kahryn_hoffmann
2K Followers 259 Following Long/PostCovid, ME/CFS & postakute Infektionssyndrome. Prävention & Primärversorgung. - Univ.-Prof. und Ärztin - !Alles hier: my own opinion!
Michael Alexander @Michaeltikus
955 Followers 2K Following I like animals 🐙 Zoology/Psych PG interested in nature connections, diving and tapirs. Member @Long_Covid / @RenegadeRes Lead contributor @wecrunchme LC-PLAN
ME/CFS Medical Educat.. @MECFS_Med_Ed
526 Followers 163 Following Promoting evidence-based medical education on ME/CFS; raising awareness among medical students, medical educators and organizations. https://t.co/OSoi2hqVXV
N.Crawford 🐈⬛.. @Caitshith
288 Followers 1K Following eco-socialist. disabled with moderate viral ME, neurodivergent with adhd + autism.
𝐖𝐀(𝐢)𝐒�.. @wastelanderbsky
2K Followers 2K Following Ehem. Journalist, überparteilich, unbequem. Nimmt #Klimawandel & #Corona ernst. #MECFS seit 2016. *Auch unter https://t.co/LExxMiIUQq zu finden*
Adrian @boerscht
1K Followers 176 Following 28y | Ingenieur | Bergsteiger & Fotograf #MECFS seit 01/2023 |
Karin Spaink @KarinSpaink
8K Followers 687 Following Writer, editor & columnist | works at @FTM_nl | technology, internet, politics, health, civil & digital rights, feminism, skepticism | [email protected]
Plague Poems @PlaguePoems
20K Followers 137 Following A record of the plague years. Z”L. (Also on: Mastodon: plaguepoems; Instagram: plague_poems; Threads: plague_poems; Bsky: plaguepoems)
Holly Stortholme @hollystortholme
3K Followers 241 Following COVID IS AIRBORNE, BSL 3 virus. Always masked indoors/outdoors. Breathe clean air. Covid is a vascular disease and maims immune system!!!
Sam (Flower Girl) Jen.. @flowergirl_lon
6K Followers 5K Following Gets very grumpy about #Inaccessibility📢 Love #Gigs 🎸 #Music 🎶 #AccessibleTravel I’m *still* #DisabledByTheRailway
Myra @Gooische_Vrouw
4K Followers 5K Following Economist, former business woman, life on hold, advocate for #ME #MECFS #LYME #LongCovid. Kijk voor meer info: https://t.co/7lgJ73O8Ve
Fran Haddock @franhaddock_
562 Followers 351 Following Spoonie 🥄 Activist ✊ Vet 🩺 (she/her) Currently bedbound with severe ME + Long Covid (more active on IG)
Pat Casola @p_casola
46 Followers 564 Following
colette behind curtai.. @colette42781309
61 Followers 263 Following visual poetry about chronic illness, severely ill, forced early retirement. #millionsmissing #mecfs #bedbound instagram: @hey.illness
Mike Dixon @PnoTuna
1K Followers 2K Following Probably either asleep, resting, or doing something I'll regret later.
sharon askew @88888888881
81 Followers 1K Following
Linn Järte @LinnJarte
2K Followers 1K Following MBBS iBSc DTM&H DMCC. Global. Junior anaesthetist. Inquisitive. Strive to always be open-minded. Clean air is a human right. I 😷 #LongCovid #COVIDisAirborne
Sam @sublimepilgrim
4K Followers 3K Following Security Engineer, MSc Cybersecurity. Long Covid, Vaccine Injury, ME, POTS, SFN. Will not be fallen by the wayside
Mareike Mitsh @MaryMitsh
463 Followers 677 Following ... kämpfe hier für meinen Mann... damit er eines Tages wieder Fußball spielen kann mit unseren Kindern. #WirFordernForschung #Nichtgenesen
Met nadruk op ofzo, want we hoeven natuurlijk helemaal niet te ‘man-uppen’, en zo klinkt ‘schouders eronder’ wel. Maakbaar. Ik kan leuk zeggen ‘ik denk dat de kunst is’ - uiteindelijk is ook dat maar gewoon een coping om door te kunnen gaan. Wist ik maar wat de kunst was.
Ik denk dat de kunst is om het op te merken, maar te blijven voelen dat dit niet is wat ik wil. En om te blijven willen en hopen. En dan dus toch maar, in plaats van de schouders op te heffen - ‘ach joh’ - de schouders er weer onder te zetten, ofzo. -
Ik vind het rot om bij mezelf van dit soort processen te voelen: van afvlakking, van vervreemding, maar ook van een soort berusting die ik niet wil hebben in dat dit voelt als de realiteit: dit is hoe het gaat. -
En het gevoel van dat het wel ‘gefixt’ wordt, ook als jij het niet kan, is er niet. Vind ik een zorgwekkend iets: dat je merkt dat dat helemaal weg is. Ik geloof niet meer in ‘het komt gewoon goed.’ Als het ‘gewoon goed’ kwam, verloren we geen mensen. -
Maar bij een kapotte fiets hef je je schouders op en ga je door, weet je dat het wel gefixt wordt. Maar bij dit merk je dus bij die poging tot ‘doorgaan’ dat het niet maar een kapotte fiets is, want je kan niet gewoon doorgaan. -
Wat als ik daar in afvlak? Ik denk dat ik dat al doe, ook als ik dat niet wil. Bij de meest afschuwelijke verhalen lijkt het net alsof ik reageer alsof het ‘maar gewoon’ gaat om iets als een kapotte fiets. ‘Ach joh.’ -
Of dat een gevoel van verslagenheid gaat heersen. Zelf merk ik dat het steeds meer wringt in hoe de situatie en reactie erop ook een soort spotlight zetten op het contrast met de situaties van de mensen met wie ik dagelijks spreek. Dat contrast is veel te groot. -
Want eerste stappen; hoe zorgen we dat dat niet excuses worden om er niet meer te hoeven zetten.. Hoe zorgen we dat dat niet stapje voor stapje strompelen wordt maar dat er flink tempo in komt? En hoe zorg je dat je zelf ook niet teveel gewenning vindt in het slome tempo. -
Ik zeg de laatste tijd wel vaker dat het voelt alsof we in een ‘nieuw seizoen’ of ‘nieuwe fase’ zijn beland qua #LongCovid #PAIS beweging. En soms bekruipt me het gevoel dat deze fase misschien nog wel moeilijker wordt. -🧵
#LongCovid 🦠 NIEUWS! 🦠 OVER DE DE 15.000 REGELING ✅ kijk aan, de regeling wordt - eindelijk - uitgebreid ✅ het bedrag wordt verhoogd naar 24.010 ✅ en de groep zorgmedewerkers die in aanmerking komt wordt verruimd met diegenen die tussen 1 juli en 31 december 2020 zijn…
@TilmanAndris @JimFaas Heel erg bedankt voor deze terechte vragen
jeumig gaan we weer wat een vies kluppie bullshit adepten is het toch eigenlijk
@JimFaas Toch maar in de pen geklommen en een e-mail gestuurd naar de Nederlandse Internisten Vereniging. 👇 (Volledig bericht wordt ook weergegeven in de Alt-tekst.)
@TilmanAndris @JimFaas Uitstekende brief! Dankjewel voor je inspanningen! Ik kijk uit naar het vervolg.
@Begrepenklacht @TilmanAndris Ik vind het ronduit absurd dat hij in deze richtlijncommissie zit.
Authorities, including medical experts, were told explicitly that it could happen, that they should research it and be very cautious and rigorous. They were not concerned. At all. It was all dismissed. There is no amount of imagining an alternative history that will change this.
I know you're only quoting some professor, who somehow missed this entirely. But as a journalist you can do better. Just because experts are failing doesn't free you from parroting words that are at best inept, at worst lies covering up major systemic failure.
You can easily find examples of this, as early as Spring of 2020. All over twitter, in articles and in academics who submitted research proposals that were all turned down. This wasn't just a predictable problem, it was widely predicted. You are helping cover this up.
You don't need to imagine this. Thousands of people predicted exactly this. Millions of us were already living with post-infectious chronic illness before. It's long-been a controversial topic in the UK, in the form of ME/CFS, and how it's systematically denied.
Hi @NicolaKSDavis, in this article, you quote “If five years ago, we were to imagine that a completely new disease, which for some can cause medium- to long-term, and potentially disabling symptoms in approximately 3% of the population [...] we would be enormously concerned.”
About 2m people have long Covid in England and Scotland, figures show theguardian.com/society/2024/a…
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