MillionsMissingNL
@mmissingholland.bsky.social
Actiegroep #MillionsMissing Holland wil betere zorg & sociale gelijkheid voor ME-patienten.
Pinned
MillionsMissingNL on X: "𝗔𝗰𝘁𝗶𝗲 𝗦𝗢𝗦: 𝗥𝗲𝗱 𝗼𝗻𝘇𝗲 𝘇𝗼𝗿𝗴, 𝗼𝗻𝘀 𝗼𝗻𝗱𝗲𝗿𝘇𝗼𝗲𝗸, 𝗼𝗻𝘀 𝗿𝗲𝗰𝗵𝘁 𝗼𝗽 𝗲𝗿𝗸𝗲𝗻𝗻𝗶𝗻𝗴 Op 12 mei, #WorldMEDay, staan we stil bij miljoenen mensen wereldwijd die leven met ME/CVS, een ernstige, chronische ziekte die vaak mensen jarenlang aan bed of huis https://t.co/rLfd9u4N8I" / X
𝗔𝗰𝘁𝗶𝗲 𝗦𝗢𝗦: 𝗥𝗲𝗱 𝗼𝗻𝘇𝗲 𝘇𝗼𝗿𝗴, 𝗼𝗻𝘀 𝗼𝗻𝗱𝗲𝗿𝘇𝗼𝗲𝗸, 𝗼𝗻𝘀 𝗿𝗲𝗰𝗵𝘁 𝗼𝗽 𝗲𝗿𝗸𝗲𝗻𝗻𝗶𝗻𝗴 Op 12 mei, #WorldMEDay, staan we stil bij miljoenen mensen wereldwijd die leven met ME/CVS, een ernstige, chronische ziekte die vaak mensen jarenlang aan bed of huis https://t.co/rLfd9u4N8I
x.com
𝗔𝗰𝘁𝗶𝗲 𝗦𝗢𝗦: 𝗥𝗲𝗱 𝗼𝗻𝘇𝗲 𝘇𝗼𝗿𝗴, 𝗼𝗻𝘀 𝗼𝗻𝗱𝗲𝗿𝘇𝗼𝗲𝗸, 𝗼𝗻𝘀 𝗿𝗲𝗰𝗵𝘁 𝗼𝗽 𝗲𝗿𝗸𝗲𝗻𝗻𝗶𝗻𝗴
Op 12 mei, #WorldMEDay, staan we stil bij miljoenen mensen wereldwijd die leven met ME/CVS, een ernstige, chronische ziekte die vaak mensen jarenlang aan bed of huis gekluisterd houdt: x.com/MMissingHoll...
#MillionsMissing
Op 12 mei, #WorldMEDay, staan we stil bij miljoenen mensen wereldwijd die leven met ME/CVS, een ernstige, chronische ziekte die vaak mensen jarenlang aan bed of huis gekluisterd houdt: x.com/MMissingHoll...
#MillionsMissing
Reposted by MillionsMissingNL
Our livestream is a bit delayed! Our goal is to go live on YouTube and Instagram at 1 pm ET now!
#MillionsMissing #DisabilitySOS
#MillionsMissing #DisabilitySOS
May 12, 2025 at 4:36 PM
Our livestream is a bit delayed! Our goal is to go live on YouTube and Instagram at 1 pm ET now!
#MillionsMissing #DisabilitySOS
#MillionsMissing #DisabilitySOS
Reposted by MillionsMissingNL
1) OMG we did it‼️‼️
In this film for #MEawarenessmonth, five medical doctors open up about living with #PAIS/#IACC conditions like ME, #longCOVID, and chronic #Lyme. It’s a format that I believe has never been shown before.
They speak candidly about their experiences
youtu.be/J0ywwLIfH_w?...
In this film for #MEawarenessmonth, five medical doctors open up about living with #PAIS/#IACC conditions like ME, #longCOVID, and chronic #Lyme. It’s a format that I believe has never been shown before.
They speak candidly about their experiences
youtu.be/J0ywwLIfH_w?...
Doctors as Patients (with subtitles)
YouTube video by Anil about ME
youtu.be
May 1, 2025 at 11:01 AM
1) OMG we did it‼️‼️
In this film for #MEawarenessmonth, five medical doctors open up about living with #PAIS/#IACC conditions like ME, #longCOVID, and chronic #Lyme. It’s a format that I believe has never been shown before.
They speak candidly about their experiences
youtu.be/J0ywwLIfH_w?...
In this film for #MEawarenessmonth, five medical doctors open up about living with #PAIS/#IACC conditions like ME, #longCOVID, and chronic #Lyme. It’s a format that I believe has never been shown before.
They speak candidly about their experiences
youtu.be/J0ywwLIfH_w?...
𝗔𝗰𝘁𝗶𝗲 𝗦𝗢𝗦: 𝗥𝗲𝗱 𝗼𝗻𝘇𝗲 𝘇𝗼𝗿𝗴, 𝗼𝗻𝘀 𝗼𝗻𝗱𝗲𝗿𝘇𝗼𝗲𝗸, 𝗼𝗻𝘀 𝗿𝗲𝗰𝗵𝘁 𝗼𝗽 𝗲𝗿𝗸𝗲𝗻𝗻𝗶𝗻𝗴
Op 12 mei, #WorldMEDay, staan we stil bij miljoenen mensen wereldwijd die leven met ME/CVS, een ernstige, chronische ziekte die vaak mensen jarenlang aan bed of huis gekluisterd houdt: x.com/MMissingHoll...
#MillionsMissing
Op 12 mei, #WorldMEDay, staan we stil bij miljoenen mensen wereldwijd die leven met ME/CVS, een ernstige, chronische ziekte die vaak mensen jarenlang aan bed of huis gekluisterd houdt: x.com/MMissingHoll...
#MillionsMissing
MillionsMissingNL on X: "𝗔𝗰𝘁𝗶𝗲 𝗦𝗢𝗦: 𝗥𝗲𝗱 𝗼𝗻𝘇𝗲 𝘇𝗼𝗿𝗴, 𝗼𝗻𝘀 𝗼𝗻𝗱𝗲𝗿𝘇𝗼𝗲𝗸, 𝗼𝗻𝘀 𝗿𝗲𝗰𝗵𝘁 𝗼𝗽 𝗲𝗿𝗸𝗲𝗻𝗻𝗶𝗻𝗴 Op 12 mei, #WorldMEDay, staan we stil bij miljoenen mensen wereldwijd die leven met ME/CVS, een ernstige, chronische ziekte die vaak mensen jarenlang aan bed of huis https://t.co/rLfd9u4N8I" / X
𝗔𝗰𝘁𝗶𝗲 𝗦𝗢𝗦: 𝗥𝗲𝗱 𝗼𝗻𝘇𝗲 𝘇𝗼𝗿𝗴, 𝗼𝗻𝘀 𝗼𝗻𝗱𝗲𝗿𝘇𝗼𝗲𝗸, 𝗼𝗻𝘀 𝗿𝗲𝗰𝗵𝘁 𝗼𝗽 𝗲𝗿𝗸𝗲𝗻𝗻𝗶𝗻𝗴 Op 12 mei, #WorldMEDay, staan we stil bij miljoenen mensen wereldwijd die leven met ME/CVS, een ernstige, chronische ziekte die vaak mensen jarenlang aan bed of huis https://t.co/rLfd9u4N8I
x.com
May 12, 2025 at 10:08 AM
𝗔𝗰𝘁𝗶𝗲 𝗦𝗢𝗦: 𝗥𝗲𝗱 𝗼𝗻𝘇𝗲 𝘇𝗼𝗿𝗴, 𝗼𝗻𝘀 𝗼𝗻𝗱𝗲𝗿𝘇𝗼𝗲𝗸, 𝗼𝗻𝘀 𝗿𝗲𝗰𝗵𝘁 𝗼𝗽 𝗲𝗿𝗸𝗲𝗻𝗻𝗶𝗻𝗴
Op 12 mei, #WorldMEDay, staan we stil bij miljoenen mensen wereldwijd die leven met ME/CVS, een ernstige, chronische ziekte die vaak mensen jarenlang aan bed of huis gekluisterd houdt: x.com/MMissingHoll...
#MillionsMissing
Op 12 mei, #WorldMEDay, staan we stil bij miljoenen mensen wereldwijd die leven met ME/CVS, een ernstige, chronische ziekte die vaak mensen jarenlang aan bed of huis gekluisterd houdt: x.com/MMissingHoll...
#MillionsMissing
Reposted by MillionsMissingNL
🚨 Actie SOS: Red onze zorg, ons onderzoek, ons recht op erkenning 🚨
Long Covid Nederland doet graag mee met de krachtige actie van @meactnet.bsky.social en @mmissingholland.bsky.social voor World ME Day!
Omdat de helft van de long covidpatiënten voldoet aan de criteria van ME, vinden
1/2🧵
Long Covid Nederland doet graag mee met de krachtige actie van @meactnet.bsky.social en @mmissingholland.bsky.social voor World ME Day!
Omdat de helft van de long covidpatiënten voldoet aan de criteria van ME, vinden
1/2🧵
May 7, 2025 at 9:09 AM
🚨 Actie SOS: Red onze zorg, ons onderzoek, ons recht op erkenning 🚨
Long Covid Nederland doet graag mee met de krachtige actie van @meactnet.bsky.social en @mmissingholland.bsky.social voor World ME Day!
Omdat de helft van de long covidpatiënten voldoet aan de criteria van ME, vinden
1/2🧵
Long Covid Nederland doet graag mee met de krachtige actie van @meactnet.bsky.social en @mmissingholland.bsky.social voor World ME Day!
Omdat de helft van de long covidpatiënten voldoet aan de criteria van ME, vinden
1/2🧵
Reposted by MillionsMissingNL
Join Jaime Seltzer, Scientific Director at MEAction, on May 12th for #MillionsMissing! Find all the details to show up in DC or online here: www.meactions.org/millionsmiss...
youtube.com/shorts/3CFxm...
@exceedhergrasp1.bsky.social
#DisabilitySOS #SaveOurScience #pwME
youtube.com/shorts/3CFxm...
@exceedhergrasp1.bsky.social
#DisabilitySOS #SaveOurScience #pwME
Jaime Seltzer shares why she is protesting in DC on May 12 for #MillionsMissing! #DisabilitySOS
YouTube video by The ME Action Network
youtube.com
May 11, 2025 at 11:30 PM
Join Jaime Seltzer, Scientific Director at MEAction, on May 12th for #MillionsMissing! Find all the details to show up in DC or online here: www.meactions.org/millionsmiss...
youtube.com/shorts/3CFxm...
@exceedhergrasp1.bsky.social
#DisabilitySOS #SaveOurScience #pwME
youtube.com/shorts/3CFxm...
@exceedhergrasp1.bsky.social
#DisabilitySOS #SaveOurScience #pwME
Reposted by MillionsMissingNL
Announcing #MillionsMissing 2025 on May 12th!
#MEAction is organizing a community-wide protest to send out an SOS to our elected officials: Save our Support Systems. Save our Science. Save Our Society. Learn more here: www.meaction.net/2025/04/02/m...
#pwME #MECFS #LongCovid #disability
#MEAction is organizing a community-wide protest to send out an SOS to our elected officials: Save our Support Systems. Save our Science. Save Our Society. Learn more here: www.meaction.net/2025/04/02/m...
#pwME #MECFS #LongCovid #disability
#MillionsMissing 2025: Sending Out An SOS
For #MillionsMissing 2024, #MEAction is sending out an SOS.
www.meaction.net
April 3, 2025 at 4:37 PM
Announcing #MillionsMissing 2025 on May 12th!
#MEAction is organizing a community-wide protest to send out an SOS to our elected officials: Save our Support Systems. Save our Science. Save Our Society. Learn more here: www.meaction.net/2025/04/02/m...
#pwME #MECFS #LongCovid #disability
#MEAction is organizing a community-wide protest to send out an SOS to our elected officials: Save our Support Systems. Save our Science. Save Our Society. Learn more here: www.meaction.net/2025/04/02/m...
#pwME #MECFS #LongCovid #disability
Reposted by MillionsMissingNL
A reminder for those participating in upcoming protests and those planning protests- #MEAction offers a guide: How to Protest with ME And other Energy-Limiting Chronic Diseases guide: www.meactions.org/_files/ugd/b...
P.S. News about #MillionsMissing coming soon!
#pwME #MECFS #LongCovid
P.S. News about #MillionsMissing coming soon!
#pwME #MECFS #LongCovid
April 2, 2025 at 6:44 PM
A reminder for those participating in upcoming protests and those planning protests- #MEAction offers a guide: How to Protest with ME And other Energy-Limiting Chronic Diseases guide: www.meactions.org/_files/ugd/b...
P.S. News about #MillionsMissing coming soon!
#pwME #MECFS #LongCovid
P.S. News about #MillionsMissing coming soon!
#pwME #MECFS #LongCovid
Reposted by MillionsMissingNL
Hello, new followers! Past time I did an intro thread. 👋
I'm Jaime Seltzer, Scientific Director at #MEAction, a nonprofit for people with infection-associated chronic illnesses like #MECFS & #LongCOVID. I maintain research affiliations w/Stanford U & Université de Montréal. 🧵
I'm Jaime Seltzer, Scientific Director at #MEAction, a nonprofit for people with infection-associated chronic illnesses like #MECFS & #LongCOVID. I maintain research affiliations w/Stanford U & Université de Montréal. 🧵
March 30, 2025 at 9:01 PM
Hello, new followers! Past time I did an intro thread. 👋
I'm Jaime Seltzer, Scientific Director at #MEAction, a nonprofit for people with infection-associated chronic illnesses like #MECFS & #LongCOVID. I maintain research affiliations w/Stanford U & Université de Montréal. 🧵
I'm Jaime Seltzer, Scientific Director at #MEAction, a nonprofit for people with infection-associated chronic illnesses like #MECFS & #LongCOVID. I maintain research affiliations w/Stanford U & Université de Montréal. 🧵
Reposted by MillionsMissingNL
Ik ben al 5 jaar ziek. Ik ga eerder achteruit dan vooruit. Huisgebonden, vaak bedgebonden. Verdwenen uit de maatschappij en uit de levens van dierbaren. Met mij honderdduizenden anderen
#NietHersteld #5JaarLongCovid #LongCovidAwarenessDay2025
@niethersteld.bsky.social @jetroz.bsky.social
#NietHersteld #5JaarLongCovid #LongCovidAwarenessDay2025
@niethersteld.bsky.social @jetroz.bsky.social
March 15, 2025 at 1:00 PM
Ik ben al 5 jaar ziek. Ik ga eerder achteruit dan vooruit. Huisgebonden, vaak bedgebonden. Verdwenen uit de maatschappij en uit de levens van dierbaren. Met mij honderdduizenden anderen
#NietHersteld #5JaarLongCovid #LongCovidAwarenessDay2025
@niethersteld.bsky.social @jetroz.bsky.social
#NietHersteld #5JaarLongCovid #LongCovidAwarenessDay2025
@niethersteld.bsky.social @jetroz.bsky.social
Reposted by MillionsMissingNL
#5JaarLongCovid, nog steeds #NietHersteld
Vandaag, op #LongCovidAwarenessDay2025, spreken velen zich uit over hun leven en ervaringen met #LongCovid.
Voor veel mensen veranderde alles van de ene op de andere dag 🧵
Vandaag, op #LongCovidAwarenessDay2025, spreken velen zich uit over hun leven en ervaringen met #LongCovid.
Voor veel mensen veranderde alles van de ene op de andere dag 🧵
March 15, 2025 at 1:15 PM
#5JaarLongCovid, nog steeds #NietHersteld
Vandaag, op #LongCovidAwarenessDay2025, spreken velen zich uit over hun leven en ervaringen met #LongCovid.
Voor veel mensen veranderde alles van de ene op de andere dag 🧵
Vandaag, op #LongCovidAwarenessDay2025, spreken velen zich uit over hun leven en ervaringen met #LongCovid.
Voor veel mensen veranderde alles van de ene op de andere dag 🧵
Reposted by MillionsMissingNL
📣 Vandaag, 14u! Doe mee!
📣 Het is bijna zover! Zaterdag is het #LongCovidAwarenessDay2025! Laat ook van je horen!
⏰ 15 maart om 14:00
#NietHersteld #5JaarLongCovid #5YearsLongCovid #LongCovid #PAIS
Hieronder alles over de actie en hoe je mee kunt doen nog een keer op een rij! 🧵
⏰ 15 maart om 14:00
#NietHersteld #5JaarLongCovid #5YearsLongCovid #LongCovid #PAIS
Hieronder alles over de actie en hoe je mee kunt doen nog een keer op een rij! 🧵
March 15, 2025 at 10:44 AM
📣 Vandaag, 14u! Doe mee!
Reposted by MillionsMissingNL
#LongCovid 🦠 CORONA IS NOG ALTIJD ONDER ONS
✅ vijf jaar later
✅ dus pas een beetje op (elkaar), mensen
‘Er komt zeker een nieuwe piek aan’ | via AD
✅ vijf jaar later
✅ dus pas een beetje op (elkaar), mensen
‘Er komt zeker een nieuwe piek aan’ | via AD
November 29, 2024 at 8:34 AM
#LongCovid 🦠 CORONA IS NOG ALTIJD ONDER ONS
✅ vijf jaar later
✅ dus pas een beetje op (elkaar), mensen
‘Er komt zeker een nieuwe piek aan’ | via AD
✅ vijf jaar later
✅ dus pas een beetje op (elkaar), mensen
‘Er komt zeker een nieuwe piek aan’ | via AD
Reposted by MillionsMissingNL
Er gaat, zie ik, weer eens een direct controversiële studie rond die uitspraken doet rondom cognitieve therapie + bewegingstherapie voor long covid.
Zonder op details van die studie etc in te willen gaan, wat mij blijft verbazen: even een 🧵 over hoe dit bij mij persoonlijk ging:
Je wordt ziek. Je
Zonder op details van die studie etc in te willen gaan, wat mij blijft verbazen: even een 🧵 over hoe dit bij mij persoonlijk ging:
Je wordt ziek. Je
November 29, 2024 at 9:56 AM
Er gaat, zie ik, weer eens een direct controversiële studie rond die uitspraken doet rondom cognitieve therapie + bewegingstherapie voor long covid.
Zonder op details van die studie etc in te willen gaan, wat mij blijft verbazen: even een 🧵 over hoe dit bij mij persoonlijk ging:
Je wordt ziek. Je
Zonder op details van die studie etc in te willen gaan, wat mij blijft verbazen: even een 🧵 over hoe dit bij mij persoonlijk ging:
Je wordt ziek. Je
Reposted by MillionsMissingNL
A new BMJ review claims that #LongCovid can be treated using CBT and physical exercise
As ever, the devil is in the detail
TL; DR the authors' own risk-of-bias analyses show that their own conclusion is unwarranted
(Too bad they hid the crucial deets in an online supplement!)
cc #pwME #MECFS
As ever, the devil is in the detail
TL; DR the authors' own risk-of-bias analyses show that their own conclusion is unwarranted
(Too bad they hid the crucial deets in an online supplement!)
cc #pwME #MECFS
That BMJ review of Long Covid therapies does not show what it says it does
The BMJ have published a “living systematic review” of interventions for the management of Long Covid. It sets out to gather all relevant studies, and to comb their findings in order to see what works...
thesciencebit.net
November 28, 2024 at 10:05 PM
A new BMJ review claims that #LongCovid can be treated using CBT and physical exercise
As ever, the devil is in the detail
TL; DR the authors' own risk-of-bias analyses show that their own conclusion is unwarranted
(Too bad they hid the crucial deets in an online supplement!)
cc #pwME #MECFS
As ever, the devil is in the detail
TL; DR the authors' own risk-of-bias analyses show that their own conclusion is unwarranted
(Too bad they hid the crucial deets in an online supplement!)
cc #pwME #MECFS
Reposted by MillionsMissingNL
Een perspectief wat niet vaak belicht wordt: mantelzorger voor een partner met ME. Mark windt er geen doekjes om. De ziekte is slopend, hij moet minder werken en mantelzorgen kost hem al zijn energie.
Er is geen zorg voor mensen met ME. Ze kunnen niet naar de Long Covid poli's.
Er is geen zorg voor mensen met ME. Ze kunnen niet naar de Long Covid poli's.
November 25, 2024 at 10:22 AM
Een perspectief wat niet vaak belicht wordt: mantelzorger voor een partner met ME. Mark windt er geen doekjes om. De ziekte is slopend, hij moet minder werken en mantelzorgen kost hem al zijn energie.
Er is geen zorg voor mensen met ME. Ze kunnen niet naar de Long Covid poli's.
Er is geen zorg voor mensen met ME. Ze kunnen niet naar de Long Covid poli's.
Reposted by MillionsMissingNL
New Video: @georgemonbiot.bsky.social describes the treatment of #MECFS as "The Greatest Medical Scandal of the 21st century". The video explores the impact of ineffective & harmful treatments & how they were defended by the scientific & media establishment.
youtu.be/RiwX9Y0NbiQ?...
youtu.be/RiwX9Y0NbiQ?...
ME/CFS Scandal Explainer (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome)
YouTube video by Broken Battery
youtu.be
November 21, 2024 at 12:42 PM
New Video: @georgemonbiot.bsky.social describes the treatment of #MECFS as "The Greatest Medical Scandal of the 21st century". The video explores the impact of ineffective & harmful treatments & how they were defended by the scientific & media establishment.
youtu.be/RiwX9Y0NbiQ?...
youtu.be/RiwX9Y0NbiQ?...
Reposted by MillionsMissingNL
1) The German agency for research BMBF has published the results of their call for proposals on ME/CFS. Approximately € 15 million is going to 7 projects and research networks over the period 2024-2027.
November 21, 2024 at 12:52 PM
1) The German agency for research BMBF has published the results of their call for proposals on ME/CFS. Approximately € 15 million is going to 7 projects and research networks over the period 2024-2027.
Reposted by MillionsMissingNL
👀 👀 have a look at how you can help improve physiotherapy education
There is a survey on improving physiotherapy education, with opportunity for service users to input.
Follow this link, click "complete a survey", and scroll to "Charities and Patient Groups- Patient Advocates"
A great opportunity to be heard!
www.csp.org.uk/networks/hig...
Follow this link, click "complete a survey", and scroll to "Charities and Patient Groups- Patient Advocates"
A great opportunity to be heard!
www.csp.org.uk/networks/hig...
Transforming Quality in Pre-Registration Physiotherapy Education
www.csp.org.uk
November 14, 2024 at 8:54 PM
👀 👀 have a look at how you can help improve physiotherapy education
Reposted by MillionsMissingNL
Whilst I’m not leaving X as yet, I would very much like to spend more time here.
So, if you see this and you’d be kind enough to share it to let readers find me, that would be greatly appreciated. Hi!
So, if you see this and you’d be kind enough to share it to let readers find me, that would be greatly appreciated. Hi!
November 14, 2024 at 10:22 AM
Whilst I’m not leaving X as yet, I would very much like to spend more time here.
So, if you see this and you’d be kind enough to share it to let readers find me, that would be greatly appreciated. Hi!
So, if you see this and you’d be kind enough to share it to let readers find me, that would be greatly appreciated. Hi!
Reposted by MillionsMissingNL
✨This petition will close TOMORROW, Nov 15!✨ We're over 7k-- next stop 10k!
In this political climate, it's more important than ever to tell NIH that we need to fund infection-associated chronic illnesses.
Sign & share widely!
US signers: lnkd.in/e99rsvdT
International signers: lnkd.in/e3TpjnTE
In this political climate, it's more important than ever to tell NIH that we need to fund infection-associated chronic illnesses.
Sign & share widely!
US signers: lnkd.in/e99rsvdT
International signers: lnkd.in/e3TpjnTE
November 14, 2024 at 2:54 PM
✨This petition will close TOMORROW, Nov 15!✨ We're over 7k-- next stop 10k!
In this political climate, it's more important than ever to tell NIH that we need to fund infection-associated chronic illnesses.
Sign & share widely!
US signers: lnkd.in/e99rsvdT
International signers: lnkd.in/e3TpjnTE
In this political climate, it's more important than ever to tell NIH that we need to fund infection-associated chronic illnesses.
Sign & share widely!
US signers: lnkd.in/e99rsvdT
International signers: lnkd.in/e3TpjnTE
Reposted by MillionsMissingNL
🦋NAVIGATING THE BLUESKY 101
We've been Sky Geeking so you hopefully don't have to.
Our first (proper) thread will cover:
CULTURE; ACCESSIBILITY; ALGORITHM; ENGAGEMENT; FINDING YOUR TRIBE; TWEAKS; COOL TOOLS; FUNKY BISCUITS 🧵1/18
We've been Sky Geeking so you hopefully don't have to.
Our first (proper) thread will cover:
CULTURE; ACCESSIBILITY; ALGORITHM; ENGAGEMENT; FINDING YOUR TRIBE; TWEAKS; COOL TOOLS; FUNKY BISCUITS 🧵1/18
November 12, 2024 at 10:46 AM
🦋NAVIGATING THE BLUESKY 101
We've been Sky Geeking so you hopefully don't have to.
Our first (proper) thread will cover:
CULTURE; ACCESSIBILITY; ALGORITHM; ENGAGEMENT; FINDING YOUR TRIBE; TWEAKS; COOL TOOLS; FUNKY BISCUITS 🧵1/18
We've been Sky Geeking so you hopefully don't have to.
Our first (proper) thread will cover:
CULTURE; ACCESSIBILITY; ALGORITHM; ENGAGEMENT; FINDING YOUR TRIBE; TWEAKS; COOL TOOLS; FUNKY BISCUITS 🧵1/18
Reposted by MillionsMissingNL
I have started a Starter Pack for ME and Long COVID. 💙
It includes some mutuals with other packs but also some new faces too. :)
Please let me know if you want to be added. I know I still have about a million wonderful people to add. 💙
go.bsky.app/6R7bqc7
It includes some mutuals with other packs but also some new faces too. :)
Please let me know if you want to be added. I know I still have about a million wonderful people to add. 💙
go.bsky.app/6R7bqc7
November 12, 2024 at 4:23 AM
I have started a Starter Pack for ME and Long COVID. 💙
It includes some mutuals with other packs but also some new faces too. :)
Please let me know if you want to be added. I know I still have about a million wonderful people to add. 💙
go.bsky.app/6R7bqc7
It includes some mutuals with other packs but also some new faces too. :)
Please let me know if you want to be added. I know I still have about a million wonderful people to add. 💙
go.bsky.app/6R7bqc7
Reposted by MillionsMissingNL
www.thereforme.uk/p/from-yuppi...
Do read this article by Karen Hargrove, a founder of “There for ME”. She says: "One of my main takeaways from years working on narratives is that narratives aren’t fixtures in the world, they’re something we all have the power to influence."
Do read this article by Karen Hargrove, a founder of “There for ME”. She says: "One of my main takeaways from years working on narratives is that narratives aren’t fixtures in the world, they’re something we all have the power to influence."
From ‘yuppie flu' to ’anti-recovery activists’
Why narratives around ME and Long Covid matter – and how to change them
www.thereforme.uk
November 12, 2024 at 5:02 PM
www.thereforme.uk/p/from-yuppi...
Do read this article by Karen Hargrove, a founder of “There for ME”. She says: "One of my main takeaways from years working on narratives is that narratives aren’t fixtures in the world, they’re something we all have the power to influence."
Do read this article by Karen Hargrove, a founder of “There for ME”. She says: "One of my main takeaways from years working on narratives is that narratives aren’t fixtures in the world, they’re something we all have the power to influence."
Reposted by MillionsMissingNL
Omdat ik de internationale Long Covid, ME, etc starterpack zo handig vond voor het vinden van wat familiar faces ben ik deze Nederlandse variant net even snel gestart. Ga hem later nog aanvullen! En doe gerust suggesties!
go.bsky.app/BkULsee
go.bsky.app/BkULsee
November 12, 2024 at 12:20 AM
Omdat ik de internationale Long Covid, ME, etc starterpack zo handig vond voor het vinden van wat familiar faces ben ik deze Nederlandse variant net even snel gestart. Ga hem later nog aanvullen! En doe gerust suggesties!
go.bsky.app/BkULsee
go.bsky.app/BkULsee
Reposted by MillionsMissingNL
1. Abuse and harassment are never acceptable. But this is not the first time I’ve seen an emphasis on abuse and harassment shielding bad science. This is a short thread on how it works.
www.theguardian.com/commentisfre...
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 21, 2024 at 8:24 AM
1. Abuse and harassment are never acceptable. But this is not the first time I’ve seen an emphasis on abuse and harassment shielding bad science. This is a short thread on how it works.
www.theguardian.com/commentisfre...
www.theguardian.com/commentisfre...