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ez

@elinz.bsky.social
582 followers 207 following 127 posts

ME/CFS, science, history of ideas, disability, photography, film, board games, curiousity, history of medicine. Location: Sweden #pwME #MECFS #NEISvoid #ChronicIllness Came here from: twitter.com/ezchili

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ez @elinz.bsky.social · 18/02/2025
📌
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emily fraser 🌿🐌✨ @emilyesfraser.bsky.social · 15/02/2025
And no, contrary to many ableds’ imaginings, becoming disabled won’t make you suddenly decide you’d be better off dead. You’ll realize you’re still you & your life is still your life & you’ll wish really badly that society didn’t devalue disabled lives & make it so freaking hard for us to survive
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ez @elinz.bsky.social · 10/02/2025
Godmorgon! Hur ser din kaffe- eller temugg ut?
Kaffekopp med hattifnattarna som fikar som motiv. Kaffekoppen står på ett täcke. Bakom koppen syns del av en suddig vilande katt.
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ez @elinz.bsky.social · 19/01/2025
Ja, det är märkligt att associeras med vissa personer. Men jag vill påpeka att "perfect is the enemy of good". Jag menar att RME gör mycket nytta och hoppas därför att folk ska fortsätta stödja dem som patientförening. Hoppas att detta inte splittrar den lilla grupp engagerade som finns. ❤️💙
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ez @elinz.bsky.social · 02/01/2025
I guess germ theory is just a theory. 🙄
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ez @elinz.bsky.social · 12/12/2024
💙❤️
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Chris Wexler @chriswexler.bsky.social · 11/12/2024
Hey #MECFS and #LongCovid community. We have a patient here in Minnesota that is suffering from temporary paralysis after a bad MCAS reaction to new medication. Has anyone else heard of this? The doctors are stumped. Need the communities help!
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ez @elinz.bsky.social · 11/12/2024
"Lathund" (one word, not two) is nowadays used for an aid of some kind. Haven't ever seen it used with its old meaning, someone who is lazy. "Latmask" is also one word, not two. Meaning someone who is lazy.
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Naomi Harvey PhD @naomidharvey.bsky.social · 17/11/2024
“Using the term “long COVID” whilst failing to identify subdiagnoses and specifying which groups are being discussed, is confusing & actively harmful both in scientific research and in a wider context.” www.healthrising.org/blog/2023/05...
healthrising.org
The Problematic Language of Long COVID and ME and Why it Matters - Health Rising
Earlier Alice penned a thought-provoking blog “No, long COVID is not helping ME/CFS”. Now she and Dr. Naomi Harvey propose that a shift in the language we use to describe both long COVID and ME/CFS wo...
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155 cm jordnötssmör och hemsökande @funkisfeministen.bsky.social · 23/11/2024
ME är inte så svårt att definiera. Enligt de kriterier som har mest forskning bakom sig så definieras det bl a genom att personen har PEM. PEM är en belastningsutlöst symtomökning med influensa, ortostatiska problem mm. translational-medicine.biomedcentral.com/articles/10....
translational-medicine.biomedcentral.com
Cardiopulmonary and metabolic responses during a 2-day CPET in myalgic encephalomyelitis/chronic fatigue syndrome: translating reduced oxygen consumption to impairment status to treatment consideratio...
Background Post-exertional malaise (PEM), the hallmark symptom of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), represents a constellation of abnormal responses to physical, cognitive, ...
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ez @elinz.bsky.social · 24/11/2024
Jag började skriva detta innan du postat resten av tråden. Förstår nu att du menar andra än ME-drabbade. Det är jobbigt med den tystnaden. Men tack att du försöker bryta den.
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ez @elinz.bsky.social · 24/11/2024
Helt ärligt så blir jag inspirerad av det du skriver. Det uppmuntrar mig att också säga ifrån och det bekräftar att jag inte är ensam i mina tankar om ME, vården och samhället. Det är en tröst att läsa någon som säger ifrån! #pwME
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The ME Inquiry Report @themeinquiryreport.bsky.social · 22/11/2024
Okej. Jag inser att det kanske är en bra grej med nån slags presentation om jag nu ska ge Bluesky en ärlig chans. Gör ett försök. Here we go.
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ez @elinz.bsky.social · 22/11/2024
Fint skrivet om kraften av populärkultur, både i skapandet och mottagandet. 😊 (*ärmar btw)
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Chris Ponting @cgatist.bsky.social · 21/10/2024
A personal viewpoint on #MECFS. This is focused not on #pwME rather on why we - society - forsake them. Please read ⬇️ theconversation.com/ignored-blam...
theconversation.com
Ignored, blamed, and sometimes left to die – a leading expert in ME explains the origins of a modern medical ‘scandal’
The co-lead of the world’s largest ever genetic study into ME calls for a radical change in how society deals with the disease.
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ez @elinz.bsky.social · 16/11/2024
Nu är du för ödmjuk.
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ez @elinz.bsky.social · 16/11/2024
This is worth reiterating! "Failure to appropriately diagnose ME/CFS amongst those with long COVID is detrimental to those suffering from it, as well as those with non-COVID ME/CFS and the general public." #pwME #MECFS #LongCovid #LCME www.healthrising.org/blog/2023/05...
healthrising.org
The Problematic Language of Long COVID and ME and Why it Matters - Health Rising
Earlier Alice penned a thought-provoking blog “No, long COVID is not helping ME/CFS”. Now she and Dr. Naomi Harvey propose that a shift in the language we use to describe both long COVID and ME/CFS wo...
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ez @elinz.bsky.social · 16/11/2024
A way to find people to follow. 🧡 bsky.app/profile/sabr...
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ez @elinz.bsky.social · 16/11/2024
Welcome! 😊 (again)
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ez @elinz.bsky.social · 30/09/2023
Hello all! 🧡 An introduction. I'm interested in science, chronic illness, medicine, disability, and the history of ME/CFS. I sometimes study history of ideas, amongst other things, at Stockholm University. Other interests are houseplants, board games, yoga, photography. #pwME #MECFS
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ez @elinz.bsky.social · 14/11/2024
I'd like to be added. Thanks for putting this together! 📌 ❤️ #pwME
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155 cm jordnötssmör och hemsökande @funkisfeministen.bsky.social · 11/11/2024
Jag har en fråga till vårdpersonal. Bakgrunden är följande: SFAM (Svensk förening för allmänmedicin) har i sin tidskrift publicerat en slags opinionsartikel som går rakt emot forskningsläget. Den bygger på en annan opinionsartikel som är skriven av lobbygruppen Oslokonsortiet. (1/?)
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ez @elinz.bsky.social · 06/11/2024
Tips att följa: @tomkindlon.bsky.social @exceedhergrasp1.bsky.social @abrokenbattery.bsky.social @funkishen.bsky.social @funkisfeministen.bsky.social @susannad.bsky.social @asa.tsbalans.se @georgemonbiot.bsky.social @ninasteinkopf.bsky.social @davetuller1.bsky.social En del följer du säkert redan!
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ez @elinz.bsky.social · 06/11/2024
Fint att se dig mer aktiv här igen! 🧡
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It's ME(Jaime) @exceedhergrasp1.bsky.social · 04/10/2023
"In the event of PEM, patients should be urged to reduce their activity and to decrease exacerbating sensory stimuli. Patients with ME/CFS should rest to recover rather than pushing through exacerbated symptoms." -- Grach et al., 2023. www.mayoclinicproceedings.org/action/showP...
mayoclinicproceedings.org
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Chris Ponting @cgatist.bsky.social · 24/10/2024
ME/CFS genetics postdoc post available at the Medical University of Vienna. The position is either full-time for 9 months or part-time for 12 months, with a start date in Q1 2025. Initial term, with possibility of extension. www.linkedin.com/jobs/view/40...
linkedin.com
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ez @elinz.bsky.social · 19/10/2024
I think that if you would copy and paste into a new thread on here, more people would read it. (I've done that with a couple of my old Twitter threads.) But as you mentioned, that takes more effort. So do whatever works for you! I did still read your introduction. 😊
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ez @elinz.bsky.social · 19/10/2024
Hi! 👋 Thanks for sharing.
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George Monbiot @georgemonbiot.bsky.social · 18/10/2024
This story is one of the most disturbing I've ever covered. It's about how the views of a deeply weird ideological sect affected science, medicine and the media, with devastating impacts on patients. Please read and pass on. This horror has to stop. www.theguardian.com/commentisfre...
theguardian.com
Maeve Boothby O’Neill died because of a discredited view of ME. How was this allowed to happen? | George Monbiot
Chronic fatigue syndrome is as physiological as a broken leg. ​We must learn all we can from this tragic case, says Guardian columnist George Monbiot
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ez @elinz.bsky.social · 17/10/2024
📌
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It's ME(Jaime) @exceedhergrasp1.bsky.social · 27/09/2024
Please share this Mayo Clinic Proceedings article discussing infection-associated chronic illness including best practices for activity management. www.mayoclinicproceedings.org/article/S002...
mayoclinicproceedings.org
Diagnosis and Management of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a chronic neurologic disease often preceded by infection. There has been increased interest in ME/CFS recently because of its significant...
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ez @elinz.bsky.social · 27/07/2024
I think you'll appreciate Dimash version of The Diva Dance then. youtu.be/o5zMupUOgQo?... Can strongly recommend listening to his version of S.O.S as well!
youtu.be
DIVA DANCE - Dimash Kudaibergen ( The world best singer )
Dimash Kudaibergen sing DIVA DANCE in Bastau Concert 2017 All credits go to Dimash Kudaibergen link to his youtube channel and Subscribe. https://www.youtube.com/channel/UCGBx... He is university trained in classical as well as in contemporary music and is known for his wide vocal range of 6 octaves, from D2 via F6 to D8. This spans from the bottom of the bass range beyond the top of the soprano range. Kudaibergen has performed songs in twelve different languages, his native language Kazakh as well as Russian, Mandarin, English, French, Ukrainian, Italian, Turkish, Serbian, Kyrgyz, German, and Spanish.
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ez @elinz.bsky.social · 15/07/2024
Ah, thanks! 😊
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It's ME(Jaime) @exceedhergrasp1.bsky.social · 20/06/2024
Hey, #NEISvoid! If you're reading this, reply to connect with the Twitter exodus who are in the disability advocacy space. Use a "pushpin" icon and then check your replies to find this post again and follow new folks who reply. And share! Let's keep this post circulating as a way to reconnect.
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ez @elinz.bsky.social · 15/07/2024
📌 Hi all! (I'm so confused, but I think this is what you meant. I'm just following suit.)
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ez @elinz.bsky.social · 04/07/2024
Om jag hade mer energi skulle jag mejla alla författare och fråga direkt. Får se om jag tar tag i det snart! Kanske får energi till det om några dagar.
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ez @elinz.bsky.social · 04/07/2024
Jag undrar om alla som står som författare har gått med på denna förändring i texten. Och om Per Julin som står med som att ha reviderat texten 2023 är medveten om förändringen. Den sista granskaren som förmodligen är ansvarig står utan datum. Kan ju ledas att tro att alla författare håller med.
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The ME Inquiry Report @themeinquiryreport.bsky.social · 04/07/2024
Region Stockholm uppdaterar vårdprogram för ME med ovetenskapliga påståenden om KBT och gradvis utökad aktivitet #vårdpol #svmed mitteremitage.wordpress.com/2024/07/04/r...
mitteremitage.wordpress.com
Region Stockholm uppdaterar vårdprogram för ME med ovetenskapliga påståenden om KBT och gradvis utökad aktivitet
Vad fan håller region Stockholm på med? Vårdprogrammet för Myalgisk Encefalomyelit (ME) på viss.nu har uppdaterats i dagarna. Inte jättemånga förändringar men det som jag ser är ändrat till det sämre....
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ez @elinz.bsky.social · 15/06/2024
Jag uppskattade den här videon på ämnet: youtu.be/LEENEFaVUzU?...
youtu.be
The Last Human – A Glimpse Into The Far Future
Because of the potential size of the future, the most important thing about our actions today might be their impact on future generations. This simple-soundi...
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155 cm jordnötssmör och hemsökande @funkisfeministen.bsky.social · 04/06/2024
Jag är i desperat jakt på en privatläkare som kan skriva ut LDN i Sthlm. Jag kan betala men absolut inte åka runt. Jag behöver vanligtvis hembesök och kan som undantag åka liggandes på bår i bil ett fåtal gånger på år. Tips mottages gärna på privatläkare som kan förskriva i Sthlm eller på distans.
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ez @elinz.bsky.social · 09/06/2024
Very cool. What is it called?
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ez @elinz.bsky.social · 04/03/2024
Was reminded of an obsession from a few years ago. Had over 30 kinds of Coleus at home. They're beautiful. But when the interest faded I got tired of the vermin they always attracted. Picture of my favourite kind. Isn't it pretty! Please share pics of any beautiful plants you have! 💜❤️💛💚
Coleus plant "Dreams Onegin". Sun lit leaves with mixed colours; red, yellow, green and brown-purple(?).
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#MillionsMissing Sweden @millionsmissingswe.bsky.social · 26/04/2024
Den 12 maj är internationella ME-dagen! Vi uppmärksammar det med en #MillionsMissing- manifestation på Sergels torg i Stockholm mellan kl. 12–15. Vi ställer hundratals par tomma skor med berättelser från ME-sjuka. #MillionsMissingSweden #pwME #svmed #MEcfs www.facebook.com/events/11681...
facebook.com
MillionsMissing Stockholm 2024
Event in Stockholm, Sweden by MillionsMissing Sweden on Sunday, May 12 2024
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ez @elinz.bsky.social · 20/04/2024
Seems MDD was diagnosed with DSM5, and CFS was diagnosed with Fukuda criteria.
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ez @elinz.bsky.social · 20/04/2024
Somatic = physical. Written like that, "somatic" should mean just that it is a physical illness. As opposed to psychological or psychosomatic. From your quote, it doesn't seem to imply the diagnosis"somatic symptom disorder".
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ez @elinz.bsky.social · 13/04/2024
Ah, tack för svar! Tror jag hänger med. Det är intressant med valfria ord. Var mest ordklass-grejen jag förvirrade mig över. Antar att vissa ord hoppar in i typ mängdordsroll (eller vad det kan heta), men kanske inte tekniskt sett tillhör ordklassen räkneord. Ursäkta mina snurriga meningar. 😊
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ez @elinz.bsky.social · 13/04/2024
Roligt med språk! Men i de svenska exemplen är det väl substantiven som ändrats bara, och inte räkneorden? Missar jag något? 😊
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Tom Kindlon @tomkindlon.bsky.social · 04/04/2024
Recording of sympathetic 5-minute clip from Channel 4 news tonight (a national UK station) youtu.be/3bPNjc4dRRs?... Thanks to Jo Bruce & the #DecodeME team including Chris Ponting @cgatist.bsky.social #MEcfs #PwME #c4news
youtu.be
World's largest genetic study of ME offers hope to sufferers
The professor leading the largest genetic study of ME in the world says research into the disease is lagging decades behind because society doesn’t take it s...
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155 cm jordnötssmör och hemsökande @funkisfeministen.bsky.social · 02/04/2024
Världsautismdagen idag. Jag önskar att jag en dag ska ses som en autist som är en fullvärdig människa, i stället för den sämre version av en icke-autist som jag behandlas som idag. (1/?)
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