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@liminal-fox.bsky.socialOct 10, 2026, 10:38 AM

Long overdue but I finally started watching Star Trek for the first time.
And honestly that salt craving tentacle monster in the first episode?
So relatable as a POTSie

#longcovid #mecfs #pots #trekkie #scifi

@ginitaivas.bsky.socialOct 10, 2026, 10:20 AM

Toivon pilkahduksia…joopa-joo 😂🫢

#Korona #Covid19 #LongCovid #MECFS

@neurostingl.bsky.socialOct 10, 2026, 9:52 AM

Bemerkenswert, wie hier offenbar agiert wird, um stigmatisierendes, falsches Framing von #MECFS im Umlauf zu halten.

Das schadet Betroffenen, weil beim Thema Unbedarfte, aus Politik und Medizin, den Blödsinn dann übernehmen.

@ustinoff.eurosky.socialOct 10, 2026, 9:48 AM

Es ist halt auch sehr viel Geld im System. Und die wahren Geldflüsse sind intransparent.
Jede:r Patient:in ist auch eine Gelegenheit, zu verdienen, oder eben ein Verlustgeschäft.
Letzteres trifft gegenwärtig auf die #mecfs -Patient:innen zu.
Das erklärt schon einen Teil der Probleme.

@drdanielloy.bsky.socialOct 10, 2026, 9:23 AM

Neues zum #MECFS -Kapitel im Verhaltenstherapie-Handbuch: Mitautor Volker Köllner erklärt nun auf LinkedIn, Herausgeber Martin Linden habe die strittigen Passagen nachträglich und ohne Rücksprache eingefügt. Das wirft weiterhin Fragen auf.
@springer.springernature.com @springernature.com

@kspink.bsky.socialOct 10, 2026, 9:09 AM

2/ and in fact scientists have studied #mecfs and #longcovid for example unfortunately the nhs still have their fingers in their ears , treat people with complex illnesses as if it’s all in the persons mind and don’t give funding . The amount of bullying too to sufferers is off the scale.

@trishaelliott.bsky.socialOct 10, 2026, 8:39 AM

You are absolutely right.

Having worked in the NHS for four decades, we remain spectacularly bad at treating and caring for people with #mecfs and in fact many long term conditions that medical science doesn’t fully understand.

#MedSky

@alemmatthees.bsky.socialOct 10, 2026, 8:33 AM

(3/3) Osler's Web by Hillary Johnson provides an indepth account of the #MECFS scandal in USA in the 1980s and early 1990s. It tells the story that can be retold countless times across the world even today. Stories of willful ignorance and willful neglect. Stories of institutionalised gaslighting.

@alemmatthees.bsky.socialOct 10, 2026, 8:30 AM

(1/3) If the testimonials of a few curious doctors about the seriousness of #MECFS in the late 1980s early 1990s were not enough to gain support from the NIH / CDC, the publication of Komaroff et al 1996 (PMID: 8873490) on disability and Jason et al 1999 (PMID: 10527290) on prevalence should have.

@restthingever.bsky.socialOct 10, 2026, 7:12 AM

Unser täglich Brot gib uns heute 😆
Frühstück als sog. „mild” #MECFS Betroffener…

Brauch ich das alles — bzw immer noch? 🤷‍♂️
Es geht besser als vor ein paar Jahren, Medis (antivirals, etc) haben def dazu beigetragen.
„Weglassen und beobachten“ ist nicht so einfach— zu viele Faktoren, Langzeitwirkung

About 15 pills lying on the palm of a hand
@abrokenbattery.bsky.socialOct 10, 2026, 6:33 AM

Thoughtful comment from a UK medical student on The #MECFS Scandal.

I’m a current medical student in the UK who as of yet knows very little about ME, but has of course seen it come up in a lot of online discourse. I’m also coincidentally very interested in pursuing either psychiatry or neurology (or a mix of both), and academia. I also have a background in neuroscience. All of that to say, it’s upsetting to hear that bad research has very rightly led to a breakdown in trust between patients with ME and doctors, has in many cases made things worse and has caused untold damage to people’s lives. The worst part is being unfairly dismissed. I cannot begin to imagine how frustrated and hopeless that must make patients that feel. I’m sorry. I’ll do my part to learn more about the condition. Poor research has made things worse, but hopefully one day more rigorous research can find some treatments for ME. That’s the least patients deserve (as well as being heard).
@neurostingl.bsky.socialOct 10, 2026, 5:12 AM

- Zell am See: überlaufen

- Oberwart: überlaufen

- Graz, Wien: ich trau mich wetten

Und trotzdem brauch ich leider keine Angst haben, dass mir die Arbeit ausgeht.

Das ist halt diese seltene #MECFS.

@ifff.bsky.socialOct 10, 2026, 4:56 AM

www.bernerzeitung.ch/sofia-goggia...

Egal was die Verfechterinnen des Immunsystemtrainings propagieren: Viren beenden Karrieren, verändern Leben und zerstören Träume.
Im Fall von Sofia Goggia bekommen wir es mit, bei vielen anderen nicht.
#MECFS

S.Gogia sitz im weissen Polo, Brille eingesteckt auf weissem Stuhl
@chronicloaf.bsky.socialOct 10, 2026, 4:43 AM

The horror movie "Bitch Ass" just started in the #ChronicLoaf stream

mzelo.com/app/rooms/ch...

#Criptober #Mutation #horrornoire #spookyseason #FilmFriday #disability #autism #insomnia #mecfs

Bitch Ass movie poster "who's the bitch ass now?"
@chronicloaf.bsky.socialOct 10, 2026, 4:22 AM

#Umma is playing now in the #ChronicLoaf stream

mzelo.com/app/rooms/ch...

#Criptober #Mutation #spookyseason #scarymovies #FilmFriday #disability #longcovid #autism #insomnia #mecfs

Umma movie poster
@tomkindlon.bsky.socialOct 10, 2026, 2:09 AM

Abandoned, dismissed and gaslighted: there is no excuse for the way ME sufferers have been betrayed

www.theguardian.com/commentisfre...

Screenshot from AMMES October 2026 newsletter

#MEcfs #PwME #CFS #MyalgicEncephalomyelitis #ChronicFatigueSyndrome

Photo of someone looking pensive with the following text Abandoned, dismissed and gaslighted: there is no excuse for the way ME sufferers have been betrayed I’ve spent my working life covering neglected issues. But few are neglected like the devastating chronic condition ME/CFS (myalgic encephalomyelitis, or chronic fatigue syndrome). In severe cases, the illness shuts down people’s lives almost entirely, causing an extreme loss of energy and a wide range of physical and cognitive symptoms that can prevent patients from working, socialising and, sometimes, even moving or eating. Yet these people have been more or less airbrushed from our minds. Read more here>>
@mari-19.bsky.socialOct 10, 2026, 1:27 AM

en.wikipedia.org/wiki/Myalgic...
Ouch, pains in my right wrist since yesterday evening. I got up at 1.45 am German time yet due to #MECFS, showered, washed & blow-dried my hair.
BP 107/76, body temp 35,6°C/96,1°F, outside it cooled down to 10,9°C/51,6°F in SW Germany.
#Samschtig #Samstag #Saturday

@ustinoff.eurosky.socialOct 9, 2026, 11:17 PM

Da es bei #MECFS bzw. #PostCovid keine wirksame Behandlung gibt, bekämpft man mit verschiedenen Medikamenten und Nahrungsergänzungsmitteln einige Symptome. Das gibt leichte Linderung. Man findet das nur durch Herumprobieren.

@bigpolarbear.bsky.socialOct 9, 2026, 10:26 PM

今日は花をお届けします😃

筋痛性脳脊髄炎が広く周知され、治療法が見つかりますように。

#ブルーフォトチャレンジ
#筋痛性脳脊髄炎
#笑顔の花びら集めたい
#5月12日
#mecfs
#bluephotochallenge

@minetodo.bsky.socialOct 9, 2026, 9:17 PM

Timely help is so urgently needed! 🙏
As you are able, please give to this new Friends of Cynthia Johnson Fall 2026 GoFundMe.
Thank you for your kindness, compassion and help. 💛
#StandByMEcfs #pwME #StillSickStillFighting since 2009
gofund.me/edb78da50 #MEcfs