#meawareness — Public Fediverse posts
Live and recent posts from across the Fediverse tagged #meawareness, aggregated by home.social.
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10/
May is Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Awareness Month, with May 12 being International ME/CFS Day.You can help by sharing and/or liking this image.
Day 10
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10/
May is Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Awareness Month, with May 12 being International ME/CFS Day.You can help by sharing and/or liking this image.
Day 10
-
10/
May is Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Awareness Month, with May 12 being International ME/CFS Day.You can help by sharing and/or liking this image.
Day 10
-
10/
May is Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Awareness Month, with May 12 being International ME/CFS Day.You can help by sharing and/or liking this image.
Day 10
-
10/
May is Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Awareness Month, with May 12 being International ME/CFS Day.You can help by sharing and/or liking this image.
Day 10
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Komm mit zur #liegenddemo in #Köln! Heute 08.05.2026 um 13 Uhr am Alter Markt!
#LiegendDemo #MECFS #PostCovid #PostVac
#LongCovid #Anerkennung #Forschung
#Versorgung #Barrierefrei #chroniquefatiquesyndrome #MEAwareness
#bigpain #SmallFiber
#POTS
#MyalgischeEnzephalomyelitis #ChronischKrank -
@mecfs
More links from #MEAction:USA:
"Join us in person at HHS in Washington D.C. for an art installation and storytelling session"
https://www.meaction.net/millionsmissing26-usa
UK:
https://www.meaction.net/millionsmissing26-uk
Global:
https://www.meaction.net/millionsmissing26-global
2/2
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@mecfs
More links from #MEAction:USA:
"Join us in person at HHS in Washington D.C. for an art installation and storytelling session"
https://www.meaction.net/millionsmissing26-usa
UK:
https://www.meaction.net/millionsmissing26-uk
Global:
https://www.meaction.net/millionsmissing26-global
2/2
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@mecfs
More links from #MEAction:USA:
"Join us in person at HHS in Washington D.C. for an art installation and storytelling session"
https://www.meaction.net/millionsmissing26-usa
UK:
https://www.meaction.net/millionsmissing26-uk
Global:
https://www.meaction.net/millionsmissing26-global
2/2
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@mecfs
More links from #MEAction:USA:
"Join us in person at HHS in Washington D.C. for an art installation and storytelling session"
https://www.meaction.net/millionsmissing26-usa
UK:
https://www.meaction.net/millionsmissing26-uk
Global:
https://www.meaction.net/millionsmissing26-global
2/2
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@mecfs
More links from #MEAction:USA:
"Join us in person at HHS in Washington D.C. for an art installation and storytelling session"
https://www.meaction.net/millionsmissing26-usa
UK:
https://www.meaction.net/millionsmissing26-uk
Global:
https://www.meaction.net/millionsmissing26-global
2/2
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Bettina Grande (Psychotherapeutin und ME/CFS Expertin & Ally):
"Zum biopsychosozialen Modell in Bezug auf ME/CFS sage ich als Psychotherapeutin Folgendes:
Wenn sich Ärzte und Wissenschaftler um biologische Faktoren kümmern und Behörden und Krankenkassen dafür sorgen würden,
dass die sozialen Faktoren weniger verheerend wären, dann würde für meine Berufsgruppe nur sehr wenig übrig bleiben." -
Netzfund zur Info:
Bei den #MEcfs #Liegenddemo wird es auch Banner zu erwerben geben.ME/(cfs) Banner - Hänge es auf!
Unter Fenster, Balkon, Gartenzaun. An Rollstuhl, Fahrrad, ins Auto legen.
Für längere Haltbarkeit gespannt aufhängen (keine Falten).
(Poste ein Foto auf Insta: #MEBanner #MEcfs #MEAwareness #Liegenddemo #MillionsMissing )
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+++ Off-Topic: ME/CFS +++
Im Krankenhaus habe ich die Dokumentarfilmerin und Regisseurin Sibylle Dahrendorf kennengelernt, die seit Jahren mit ME/CFS lebt. Ihre Ausdauer und innere Stärke haben mich tief beeindruckt.
Die Dokumentation „Chronisch krank, chronisch ignoriert“ (ARTE, 2025) thematisiert eindringlich die Multisystemerkrankung ME/CFS, ihre Komorbiditäten und die strukturellen Versorgungslücken.
Bitte um Beteiligung, damit die wichtige Doku verfügbar bleibt:
https://www.openpetition.de/petition/online/verlaengerung-der-online-verfuegbarkeit-arte-doku-chronisch-krank-chronisch-ignoriert#MECFS #LongCovid #CFSME #ChronicFatigueSyndrome #MEAwareness #CFSAwareness #Spoonie #ChronicIllness #OpenPetition #Petition #ARTE #Gesundheitssystem #ChronischKrankChronischIgnoriert
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Aun así no es fácil: los ruidos, las voces, el tacto, los olores, la sola presencia de una persona. Pero cualquier cosa es mejor que la situación en la que (sobre)vivía.
#320 #8agosto Día de la #EncefalomielitisMiálgica Severa 🛌🏼 https://domandoallobo.blogspot.com/2025/08/320-Dia--Encefalomielitis-Mialgica-Severa.html
#DíaEMSevera #ConcienciaciónEM #AcabarConElAbandono #MyalgicEncephalomyelitis #SevereMEDay #MEAwareness #EndTheNeglect #pwME
2/2 -
De no atenderme a ser un caso urgente para #ServiciosSociales. Dormía en sábanas sucias que olían, con aseo deficiente, a menudo no podía levantarme para ir al WC o incorporarme para beber, me saltaba comidas incluso si era calentar un plato precocinado.
El Ayuntamiento me ofreció el #SAD antes que la Junta de Andalucía, el catering y me devolvió un poco la dignidad.
#DíaEMGrave #ConcienciaciónEM #AcabarConElAbandono #MyalgicEncephalomyelitis #SevereMEDay #MEAwareness #EndTheNeglect #pwME
1/2 -
Please share this widely! ‼️ ⬇️🧵
The film "Chronically Ignored" will be available online for the first time internationally, starting Friday, June 6th, at 9 a.m (German Time). The link will be this one here:
https://vimeo.com/ondemand/chronicallyignored"Chronically Ignored" is an investigative documentary about a dark chapter in the history of medicine.
1/#ME #MEcfs #ChronicallyIgnored #greatestMEdicalscandal #chronicillness #longcovid #FQAD #MCAS #EDS #POTS #CCI #SFN #MEawareness
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I'm back! 😁
Next I'll share resources for people who have ME/CFS.
Because of an overlap in symptoms these resources may also help folks who have Long Covid, or who have some kind of orthostatic intolerance like POTS (Postural Orthostatic Tachycardia Syndrome) or NMH (Neurally Mediated Hypotension) - or both!
An umbrella term often used is IACC, Infection Associated Chronic Conditions.
7/n
#MEcfs #LongCovid #POTS #MillionsMissing #Dysautonomia #MEAwareness #WorldMEDay
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Okay, taking a break for a while!
I'm resting to avoid PEM (post-exertional malaise) also called PESE (post-exertional symptom exacerbation)
Speaking of resting here's a link to the #StopRestPace page by #MEAction which was created a few years back to explain the importance of pacing and resting to new Long Covid patients:
https://www.meaction.net/stoprestpace/
It has links to a few different pacing and management guides.
6/n
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What does #MillionsMissing mean?
Even mild cases of ME/CFS cause significant loss. People with ME are missing from jobs (part time work), social activities, and exercise.
Moderate cases cause more loss so they may rarely leave the house.
People with severe ME are stuck in bed. Some use eye shades & ear plugs to reduce sensory input.
As ME/CFS gets worse a patient's world shrinks.
Attached comic is by Kornelia Paulsen.
5/n
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@ddp Thanks for posting this video! ❤️
From the YouTube summary:
"It’s estimated 65,000 New Zealanders have the disease – with Long Covid driving ME rates 15 times higher than before the pandemic."
Another sad statistic showing that COVID is not over. 😔
#MEcfs #LongCovid #COVID #CovidIsNotOver #NewZealand #MEAwareness #WorldMEDay #MyalgicEncephalomyelitis
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While most ME/CFS patients do have abnormal results from one or more tests, there's no single test (yet) which can reliably diagnose this illness.
Two links on ME/CFS diagnosis -
1. Concise Review for Clinicians from Mayo Proceedings:
https://www.mayoclinicproceedings.org/article/S0025-6196(23)00402-0/fulltext
2. "ME/CFS Basics" from the CDC:
https://www.cdc.gov/me-cfs/about/index.html
4/n
#MEcfs #MedEd #MillionsMissing #MEAwareness #MEAwarenessDay #WorldMEDay
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If you learn nothing else from my thread today, please remember this:
Exercise is NOT recommended for people with ME/CFS!
Exercise is not good for anyone who has post-exertional malaise (PEM), sometimes called post-exertional symptom exacerbation (PESE), and that includes a significant portion of people with Long Covid.
This video has more info:
https://www.youtube.com/watch?v=wxSwYUennBA
3/n
#MEcfs #PwME #PEM #PESE #LongCovid #MillionsMissing #MEAwareness #WorldMEDay
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My story, in brief:
I caught an unknown virus in Dec 1989. I thought I'd recovered but then started getting new symptoms in Jan 1990. In March I went on medical leave.
Over the next 5 years I went to dozens of doctors but got no diagnosis until 1995. I tried to keep working but finally got too sick to work in 2000.
Pushing myself all those years led to a permanent worsening of my condition.
Not a good idea! 😔
2/n
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💙 It's May 12th, International ME/CFS Awareness Day 💙
My ME/CFS onset was in Jan 1990
🚨 Many recent ME/CFS cases have been triggered by COVID 🚨In this thread I plan to post about 3 main things:
1. My ME/CFS story (briefly)
2. Helpful resources for patients and clinicians
3. Advocacy options for patients & allies (friends/family) - mostly US based
1/n
#MEcfs #LongCovid #PostCovid #Disability #DisabilitySOS #CovidIsNotOver #MillionsMissing #MEAwareness #WorldMEDay
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From World ME Alliance:
"Country-by-Country Highlights for World ME Day 2025"
https://worldmealliance.org/2025/05/country-by-country-highlights-for-world-me-day-2025/
"… a breakdown of national events and campaigns happening by country, highlighting the wide range of efforts to raise awareness, push for better care, and demand action for people living with Myalgic Encephalomyelitis (ME)"
#MEcfs #PwME #MEAwareness #MEAwarenessDay #May12 #MillionsMissing
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I missed this back when it was first published:
"The hermeneutical injustice of ME"
https://www.thereforme.uk/p/the-hermeneutical-injustice-of-me?r=17hcra
When Words Fail
"For me, one of the hardest parts of living with ME was the absence of a clear framework for describing and understanding it. The way I had once made sense of my body no longer applied …
I had no reference points for what I was experiencing."
#MEcfs #PwME #ThereForME #MEAwareness #MyalgicEncephalomyelitis
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#MillionsMissing 2025: Sending Out An SOS
Reminder: Two planning meetings for #MEAction Millions Missing 2025 (for ME/CFS Awareness Day - May 12) are scheduled for tomorrow!
https://www.meaction.net/2025/04/08/why-were-sending-out-an-sos-this-millionsmissing/
Here's how to sign up
Meeting 1: Thursday, April 10, 12 pm Pacific, 3 pm Eastern
https://us06web.zoom.us/meeting/register/EHwZzzubSpqIi31vM1VRNQ#/registration
Meeting 2: Thursday, April 10, 3 pm Pacific / 6 pm Eastern
https://us06web.zoom.us/meeting/register/2hriH4c1RU6VbSGbEBrjHA#/registration
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This is a longer of 2 trailers for the #Notjustfatigue 15-minute documentary on ME/CFS
Elizabeth has posted this video already on her #Notjustfatigue social media accounts & has kindly given me permission to share it on some other social media platforms I'm on. Please do check out her Facebook page which is just starting #Notjustfatigue which links to her website.
@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MEawareness @severeme
#SevereME -
This is one of 2 trailers for the #Notjustfatigue 15-minute documentary on ME/CFS
Elizabeth has posted this video already on her #Notjustfatigue social media accounts & has kindly given me permission to share it on some other social media platforms I'm on. Please do check out the website for her non-profit #Notjustfatigue https://www.notjustfatigue.org which hosts the full 15-minute video
@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MEawareness -
2/
For what they are worth, here are my initial thoughts on the #notjustfatigue 15-minute documentary which can be watched for free here:
https://www.notjustfatigue.org/film#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEAwareness @mecfs #mecfs @severeme
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ME Research UK
For ease of access, we have collated all our symptom postings from ME Awareness Week into one article:
https://www.meresearch.org.uk/what-makes-me-cfs-so-debilitating/#MEAW2024 #MEAwarenessweek #Myalgicencephalomyelitis #mecfs #MyalgicE
#MEAwareness #PEM #pwME #MECFS #MyalgicEncephalomyelitis -
ME Research UK
For ease of access, we have collated all our symptom postings from ME Awareness Week into one article:
https://www.meresearch.org.uk/what-makes-me-cfs-so-debilitating/#MEAW2024 #MEAwarenessweek #Myalgicencephalomyelitis #mecfs #MyalgicE
#MEAwareness #PEM #pwME #MECFS #MyalgicEncephalomyelitis -
ME Research UK
For ease of access, we have collated all our symptom postings from ME Awareness Week into one article:
https://www.meresearch.org.uk/what-makes-me-cfs-so-debilitating/#MEAW2024 #MEAwarenessweek #Myalgicencephalomyelitis #mecfs #MyalgicE
#MEAwareness #PEM #pwME #MECFS #MyalgicEncephalomyelitis -
ME Research UK
For ease of access, we have collated all our symptom postings from ME Awareness Week into one article:
https://www.meresearch.org.uk/what-makes-me-cfs-so-debilitating/#MEAW2024 #MEAwarenessweek #Myalgicencephalomyelitis #mecfs #MyalgicE
#MEAwareness #PEM #pwME #MECFS #MyalgicEncephalomyelitis -
ME Research UK
For ease of access, we have collated all our symptom postings from ME Awareness Week into one article:
https://www.meresearch.org.uk/what-makes-me-cfs-so-debilitating/#MEAW2024 #MEAwarenessweek #Myalgicencephalomyelitis #mecfs #MyalgicE
#MEAwareness #PEM #pwME #MECFS #MyalgicEncephalomyelitis -
ME Research UK
“People with ME/CFS often report waking up exhausted and feeling as if they haven't slept at all—no matter how long they were actually asleep.” https://bit.ly/4b8cDBq
Read more about sleep in ME/CFS: https://www.meresearch.org.uk/world-sleep-day-2024/
#MEAwareness #MEAwarenessweek #pwME #sleepdysfunction @mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME -
ME Research UK
“People with ME/CFS often report waking up exhausted and feeling as if they haven't slept at all—no matter how long they were actually asleep.” https://bit.ly/4b8cDBq
Read more about sleep in ME/CFS: https://www.meresearch.org.uk/world-sleep-day-2024/
#MEAwareness #MEAwarenessweek #pwME #sleepdysfunction @mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME -
ME Research UK
“People with ME/CFS often report waking up exhausted and feeling as if they haven't slept at all—no matter how long they were actually asleep.” https://bit.ly/4b8cDBq
Read more about sleep in ME/CFS: https://www.meresearch.org.uk/world-sleep-day-2024/
#MEAwareness #MEAwarenessweek #pwME #sleepdysfunction @mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME -
ME Research UK
“People with ME/CFS often report waking up exhausted and feeling as if they haven't slept at all—no matter how long they were actually asleep.” https://bit.ly/4b8cDBq
Read more about sleep in ME/CFS: https://www.meresearch.org.uk/world-sleep-day-2024/
#MEAwareness #MEAwarenessweek #pwME #sleepdysfunction @mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME -
ME Research UK
“People with ME/CFS often report waking up exhausted and feeling as if they haven't slept at all—no matter how long they were actually asleep.” https://bit.ly/4b8cDBq
Read more about sleep in ME/CFS: https://www.meresearch.org.uk/world-sleep-day-2024/
#MEAwareness #MEAwarenessweek #pwME #sleepdysfunction @mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME -
ME Research UK
Cognitive dysfunction ("brain fog") cannot be equated to occasional forgetfulness and lapses in concentration experienced by healthy individuals, rather it is a complex and distressing symptom.
Read more: https://bit.ly/MEbrainfog2
#MEAwareness #MEAwarenessweek #MECFS #brainfog @mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
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ME Research UK
Cognitive dysfunction ("brain fog") cannot be equated to occasional forgetfulness and lapses in concentration experienced by healthy individuals, rather it is a complex and distressing symptom.
Read more: https://bit.ly/MEbrainfog2
#MEAwareness #MEAwarenessweek #MECFS #brainfog @mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
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ME Research UK
Cognitive dysfunction ("brain fog") cannot be equated to occasional forgetfulness and lapses in concentration experienced by healthy individuals, rather it is a complex and distressing symptom.
Read more: https://bit.ly/MEbrainfog2
#MEAwareness #MEAwarenessweek #MECFS #brainfog @mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
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ME Research UK
Cognitive dysfunction ("brain fog") cannot be equated to occasional forgetfulness and lapses in concentration experienced by healthy individuals, rather it is a complex and distressing symptom.
Read more: https://bit.ly/MEbrainfog2
#MEAwareness #MEAwarenessweek #MECFS #brainfog @mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
