Latest posts tagged with #MeCFS on Bluesky
“It’s been devastating… it’s capsized my life as a mother.” Jane had to give up her 18yr career to care for her child with #LongCovid
MP Jo Platt, who has #LongCovid and #MECFS warns we’ve stopped counting cases so don’t even know the extent of the problem. Clip from ITV News.
Filigrane Wüstenlilie in weiter, karger Landschaft. KI generiert
Manche Dinge werden erst sichtbar, wenn das Leben plötzlich langsamer wird.
Mein neuer Beitrag: „Wüstenblüten“
pacing-mecfs.de/wuestenbluet...
#mecfs #lebenmitmecfs
International Long COVID Awareness Day 15 March
International Long COVID Awareness Day
Rasing awaness of the profound effects of Long COVID
Echoes of ME
www.europeanmealliance.org/news-Q12026-...
#mecfs #longcovid
'For hundreds of thousands of people in Germany with #MECFS and #LongCovid, this isn't a thought experiment. It's everyday life. The illness makes children, friends, colleagues, and neighbours practically vanish from life.'
Puh. Nachricht bekommen, "schau mal ZDF 37° jetzt."
Dann noch:
"Der junge Mann in den Bericht hat MEcfs und wie er da raus kam. Es geht um den. Willen zurück ins Leben zu kommen und raus aus der Rente. Positive Einstellung. Schau es dir an."
NEIN, #MEcfs ist keine Soap Opera mit Happy End. 😞
279 million people - from my ME/CFS photo project
glass.photo/andrewgiffor...
ALT: Colour photo of a rotund green-blue-grey pumpkin on a counter top, looking a little like a planet
#Photography #MECFS #pwME #LongCovid #MillionsMissing #LongCovidAwarenessDay
Seit 2,5 Jahren lebe ich mit Long Covid und ME/CFS. Wie sich mein Leben verändert hat.
#LongCovidAwareness #LongCovid #MECFS
Kachel der MissingDOCTORSandPSYCHOTHERAPISTS: Vorher: niedergelassene Psychotherapeutin spezialisiert auf schwere Erkrankungen und Traumafolgen Nachher: 23h bettgebunden und reizintolerant, kann Freundinnen nicht mehr treffen. Klara, 50, ME/CFS nach Covid
Am 15.3.2026 ist #LongCovidAwarenessDay.
Über 80% unserer Mitglieder sind nach einer Infektion mit #Covid19 zumeist an #MECFS erkrankt. Andere hatten bereits ME/CFS und haben sich durch #Covid stark verschlechtert.
#LongCovid
#MECFS
#WhatIhavelost
Für hunderttausende Menschen in Deutschland mit #MECFS und #LongCovid ist das kein Gedankenexperiment. Es ist Alltag. Die Krankheit lässt Kinder, Freunde, Kolleginnen, Nachbarn quasi aus dem Leben verschwinden.
(3/4)
Text wie im Post
Durch das weiter zirkulierende Virus und die fehlende Prävention kommen unaufhörlich Neuerkrankte hinzu, denen nach heutigem Stand noch nicht ursächlich geholfen werden kann.
Häufig wird mit hierdurch #MECFS - eine lange bekannte, aber immens vernachlässigte Erkrankung - ausgelöst.
Stations/zones, carts, chairs and prepped items are super helpful for pacing and easier functioning.
#Spoonie
#MECFS #DisabilitySky
🔋👇🏼 #MECFS
Wie erklärt man jemandem, der das noch nie gehört hat,was #PEM ist? Wie können Betroffene/Angehörige/Arbeitskollegen damit umgehen - und was ist mit Reha+Diagnosetests? Das umfassende, praxisnahe Interview mit Prof.Puta @riffreporter.bsky.social: www.riffreporter.de/de/wissen/po... #MECFS #LongCovid
Gibt es eine Empfehlung oder Off Label Empfehlung für #Opipramol bei #MECFS ?
Nee, ich werde keine Cookies akzeptieren, hab selbige und die Caches grad vorhin gelöscht, mache ich wöchentlich, also poste ich nur.
Ist Ihr Heimatort bei der Earth Hour 2026 dabei?
Wegen #MECFS muss ich schon gegen 18 Uhr ins Bett.
www.wwf.de/earth-hour
@wwf.de
In Their Own Words: #MECFS & #Fibromyalgia Patients Describe Their Symptoms @CortJohnson
"I would not wish this illness on my worst enemy (if I had one)... sometimes I wish the naysayers could live in our bodies."
🔗
www.healthrising.org/forums/resou...
#MEAwareness #FibromyalgiaAwareness
Assessment and Incidence Determination of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Following a SARS-CoV-2 Infection in a Prospective Cohort of Hospital Employees — Matthias Tack et al. "our study found an incidence of at least 11.8% (CI 95% 7.8–16.8) for PCS with fatigue and 3.2% (CI 95% 1.3–6.4) for post-COVID-19 ME/CFS in HEs 21 months after the first SARS-CoV-2 infection."
From Germany:
Assessment and Incidence Determination of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Following a SARS-CoV-2 Infection in a Prospective Cohort of Hospital Employees
www.mdpi.com/1648-9144/62...
Screenshot from Science for ME weekly update
#LongCovid #MEcfs #CFS #PwME
George and his ME/CFS 3-panel cartoon 1st panel: George: it's my ME/CFS… I'm having a really bad day 2nd panel: woman to George: any idea what caused this setback? 3rd panel: George: I've narrowed it down to something I haven't taken (in the background are lots of boxes of different prescriptions)
6/
More from a series of comic strips about life as a person with ME/CFS.
"George and His ME/CFS"
🎨Rick Menard
#MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
今日は川面をお届けします😃
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
Is the RACGP HANDI recommendation of incremental physical activity for chronic fatigue syndrome/myalgic encephalomyelitis harming patients? — Stallard et al. "Given the lack of sound research support for graded exercise therapy in ME/CFS, the contraindication of graded exercise therapy by best practice guidelines in the US and the UK, and patient reports of iatrogenic harm, the RACGP guideline, Incremental physical activity for chronic fatigue syndrome/ myalgic encephalomyelitis, should be withdrawn immediately."
5/
Is the RACGP HANDI recommendation of incremental physical activity for chronic fatigue syndrome/myalgic encephalomyelitis harming patients?
www1.racgp.org.au/ajgp/2026/ma...
Screenshot from Science for ME weekly update
#MEcfs #CFS
10/
“(Contd) They must move away from the idea that activity is dangerous, and instead say that activity is necessary and important, it provides safe exploration of activity, instead of it feeling dangerous. Severity does not mean anything for carrying out treatment.”
#MEcfs #CFS #PwME #CFSME
From the Irish ME/CFS Association: We were delighted to get another grant for core funding of €3000 last week from the Hospital Saturday Fund following an application Tom Kindlon made earlier in the year. The Hospital Saturday Fund gets its funds from Hospital Saturday Fund health plans. Medical charities can only get funds once a year so we will of course need to be careful how we plan to use it. In photo: Vera & Tom Kindlon, committee members of the Irish ME/CFS Association, an all-volunteer organisation. Photo was actually from 2020: they transferred the money this year so we don't have one of those envelopes with their name on it. The Hospital Saturday Fund #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME Tom Kindlon-pwme
2/2
Longer message regarding the €3000 core funding grant that we were delighted to receive this week from the Hospital Saturday Fund
#MEcfs #CFS #MyalgicE #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #PwME #MyE
Photo of Vera and Tom Kindlon
Delighted to receive a €3000 core funding grant from the Hospital Saturday Fund this week.
Will be very useful as there has been relatively little fundraising for us in recent times
In photo: Vera Kindlon & @tomkindlon.bsky.social
Longer message in next post
#MEcfs #CFS #MyalgicE #PwME
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9/
“(Contd) Rapid changes can occur when the patient becomes curious about new ways of thinking about the disease.”
You would think doctors shouldn’t be spouting unevidenced rubbish in a court room like this!
#MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
S1E1 of #HeatedRivalry is starting soon in the #ChronicLoaf stream
Hop in and watch with us ahead of the #SeatedRivalry, Sled Hockey championship tomorrow morning!
mzelo.com/app/rooms/ch...
#NEISvoid #mecfs #DisCo #ForTinu #spoonie #cannabisculture #lgbtqrepresentation
Square promotional graphic with a teal background and blurred virus imagery. The Emerge Australia logo appears in the top left. A dark blue panel reads “International Long COVID Awareness Day 2026” with date “15 March.”
For many living with #longCOVID & #mecfs, life is measured in energy, not time.
Awareness is not only knowing long COVID & ME/CFS exist, it’s understanding the energy calculations people make every day.
Support research. Clinical education. Equitable access to care. Importantly - believe them.
It's 5PM and my body almost works now.
#mecfs #myalgicencephalomyelitis #POTS
#MECFS
Wenn man keine "Löffel" mehr übrig hat, um die Spülmaschine auszuräumen, dies aber dringend tun müsste, weil man keine Löffel mehr zum Essen hat. 😵💫
🥄🥄🥄
#IronieDesSchicksals #spoonie
