ez
@elinz.bsky.social
ME/CFS, science, history of ideas, disability, photography, film, board games, curiousity, history of medicine. Location: Sweden
#pwME #MECFS #NEISvoid #ChronicIllness
Came here from: https://twitter.com/ezchili
#pwME #MECFS #NEISvoid #ChronicIllness
Came here from: https://twitter.com/ezchili
Pinned
ez
@elinz.bsky.social
· Oct 4
A thread of rest assured.
Historical and contemporary quotes on the importance of rest for people with ME.
#MECFS #pwME #StopRestPace #MedEd #svmed #HistMed #HistoryOfMedicine #PostExertionalMalaise
Historical and contemporary quotes on the importance of rest for people with ME.
#MECFS #pwME #StopRestPace #MedEd #svmed #HistMed #HistoryOfMedicine #PostExertionalMalaise
Reposted by ez
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
No one is immune from #disability.
Do yourselves a favor and reflect on that. Seriously.
#DisabilityJustice
Do yourselves a favor and reflect on that. Seriously.
#DisabilityJustice
No one is immune from disability. It can happen to anyone at anytime, regardless of how 'young and healthy' you are.
Stop believing you will be the exception, and start engaging in disability justice. It's far easier to fight for better support and treatment while you still have your health.
Stop believing you will be the exception, and start engaging in disability justice. It's far easier to fight for better support and treatment while you still have your health.
February 15, 2025 at 3:49 AM
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
Godmorgon! Hur ser din kaffe- eller temugg ut?
February 10, 2025 at 9:20 AM
Godmorgon! Hur ser din kaffe- eller temugg ut?
Reposted by ez
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!
Has anyone else heard of this? The doctors are stumped. Need the communities help!
December 11, 2024 at 8:32 PM
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!
Has anyone else heard of this? The doctors are stumped. Need the communities help!
Reposted by ez
“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...
www.healthrising.org/blog/2023/05...
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...
www.healthrising.org
November 17, 2024 at 11:26 AM
“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...
www.healthrising.org/blog/2023/05...
Reposted by ez
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....
PEM är en belastningsutlöst symtomökning med influensa, ortostatiska problem mm.
translational-medicine.biomedcentral.com/articles/10....
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, ...
translational-medicine.biomedcentral.com
November 23, 2024 at 2:05 PM
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....
PEM är en belastningsutlöst symtomökning med influensa, ortostatiska problem mm.
translational-medicine.biomedcentral.com/articles/10....
Reposted by ez
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.
Here we go.
November 22, 2024 at 1:53 PM
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.
Here we go.
Reposted by ez
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-blam...
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.
theconversation.com
October 21, 2024 at 9:45 AM
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-blam...
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...
"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...
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...
www.healthrising.org
November 16, 2024 at 10:25 AM
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...
"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...
Reposted by ez
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
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
September 30, 2023 at 9:52 PM
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
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
Reposted by ez
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/?)
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/?)
November 11, 2024 at 10:22 AM
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/?)
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/?)
Reposted by ez
"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...
www.mayoclinicproceedings.org
October 4, 2023 at 9:03 PM
"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...
Reposted by ez
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...
www.linkedin.com
October 24, 2024 at 7:30 PM
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...
Reposted by ez
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...
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
www.theguardian.com
October 18, 2024 at 6:39 AM
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...
Reposted by ez
Please share this Mayo Clinic Proceedings article discussing infection-associated chronic illness including best practices for activity management.
www.mayoclinicproceedings.org/article/S002...
www.mayoclinicproceedings.org/article/S002...
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...
www.mayoclinicproceedings.org
September 27, 2024 at 5:15 PM
Please share this Mayo Clinic Proceedings article discussing infection-associated chronic illness including best practices for activity management.
www.mayoclinicproceedings.org/article/S002...
www.mayoclinicproceedings.org/article/S002...
Reposted by ez
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.
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.
There's an interesting problem in digital preservation, which is that preservation only exists actively. Only the things you actively move to new formats, survives.
Community is probably the same way: it has to be actively maintained in order to outlive whatever spot it's currently in.
Community is probably the same way: it has to be actively maintained in order to outlive whatever spot it's currently in.
June 20, 2024 at 7:41 PM
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.
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.
Reposted by ez
Region Stockholm uppdaterar vårdprogram för ME med ovetenskapliga påståenden om KBT och gradvis utökad aktivitet
#vårdpol #svmed
mitteremitage.wordpress.com/2024/07/04/r...
#vårdpol #svmed
mitteremitage.wordpress.com/2024/07/04/r...
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....
mitteremitage.wordpress.com
July 4, 2024 at 5:39 PM
Region Stockholm uppdaterar vårdprogram för ME med ovetenskapliga påståenden om KBT och gradvis utökad aktivitet
#vårdpol #svmed
mitteremitage.wordpress.com/2024/07/04/r...
#vårdpol #svmed
mitteremitage.wordpress.com/2024/07/04/r...
Reposted by ez
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.
Tips mottages gärna på privatläkare som kan förskriva i Sthlm eller på distans.
Efterlysning av privatläkare skulle hjälpa, men jag behöver någon som gör hembesök i Sthlm. Insamling av pengar behövs inte, jag har antagligen råd att betala.
Tack för förslagen ❤️
Tack för förslagen ❤️
June 4, 2024 at 7:39 AM
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.
Tips mottages gärna på privatläkare som kan förskriva i Sthlm eller på distans.
Reposted by ez
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!
💜❤️💛💚
Picture of my favourite kind. Isn't it pretty!
Please share pics of any beautiful plants you have!
💜❤️💛💚
March 4, 2024 at 5:17 PM
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!
💜❤️💛💚
Picture of my favourite kind. Isn't it pretty!
Please share pics of any beautiful plants you have!
💜❤️💛💚
Reposted by ez
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...
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...
MillionsMissing Stockholm 2024
Event in Stockholm, Sweden by MillionsMissing Sweden on Sunday, May 12 2024
www.facebook.com
April 26, 2024 at 8:03 PM
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...
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...
Reposted by ez
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/3bPNjc4dRRs?...
Thanks to Jo Bruce & the #DecodeME team including Chris Ponting @cgatist.bsky.social
#MEcfs #PwME #c4news
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...
youtu.be
April 4, 2024 at 7:16 PM
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/3bPNjc4dRRs?...
Thanks to Jo Bruce & the #DecodeME team including Chris Ponting @cgatist.bsky.social
#MEcfs #PwME #c4news
Reposted by ez
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/?)
April 2, 2024 at 7:55 AM
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/?)
Long Covid is a useful and important name and diagnostic code!
As important are subgroups that LC patients might fulfill criteria for.
The fact that it is possible to get severe post-infectious syndromes from other viruses, like the flu, does NOT mean that the term #LongCovid is redundant.
As important are subgroups that LC patients might fulfill criteria for.
The fact that it is possible to get severe post-infectious syndromes from other viruses, like the flu, does NOT mean that the term #LongCovid is redundant.
March 16, 2024 at 4:02 PM
Long Covid is a useful and important name and diagnostic code!
As important are subgroups that LC patients might fulfill criteria for.
The fact that it is possible to get severe post-infectious syndromes from other viruses, like the flu, does NOT mean that the term #LongCovid is redundant.
As important are subgroups that LC patients might fulfill criteria for.
The fact that it is possible to get severe post-infectious syndromes from other viruses, like the flu, does NOT mean that the term #LongCovid is redundant.
Är besviken på att svenska forskare och media ignorerar att ca 50% av de med postcovid har ME/CFS.
Blir lika ledsen för varje artikel. Artiklar som i övrigt är bra och med experter som borde veta bättre.
Jag hoppas på kunskapsspridning. Det sker inte genom att ignorera ME.
#MECFS #pwME #svmed
Blir lika ledsen för varje artikel. Artiklar som i övrigt är bra och med experter som borde veta bättre.
Jag hoppas på kunskapsspridning. Det sker inte genom att ignorera ME.
#MECFS #pwME #svmed
March 10, 2024 at 12:42 PM
Reposted by ez
Avsnitt 1: Varför är det viktigt för mig att granska vård och forskning?
#vårdpol #svmed #mecfs #etik
mitteremitage.wordpress.com/2024/03/07/m...
#vårdpol #svmed #mecfs #etik
mitteremitage.wordpress.com/2024/03/07/m...
Maran S1A1: Varför är det viktigt för mig att granska vård och forskning?
Detta är mitt manus till avsnitt 1 i dokumentärpodden Maran. Klicka på denna länk om du vill lyssna. Jag har under många år granskat vård och forskning. Nu är det dags igen, men i ett lite annorlunda ...
mitteremitage.wordpress.com
March 7, 2024 at 8:08 AM
Avsnitt 1: Varför är det viktigt för mig att granska vård och forskning?
#vårdpol #svmed #mecfs #etik
mitteremitage.wordpress.com/2024/03/07/m...
#vårdpol #svmed #mecfs #etik
mitteremitage.wordpress.com/2024/03/07/m...