#MECFSawareness
LightNews LightNews
assistenzhund-leo.bsky.social
#Assistenzhund #AssistenzhundLeo #Assistenzhundalltag #AssistenzhundInAusbildung #MECFS #MECFSAssistenzhund #MEcfsAwareness #Crash #Pacing #EnergieManagement #Ruhetag #Auszeit #GemeinsamRuhen #LeoPasstAuf #Hundeliebe #Labradorliebe #AlltagMitAssistenzhund #Rehacare2026
September 23, 2026 at 5:38 PM
katjatrtilek.bsky.social
Zwei meiner Fotos haben es in die Galerie der Stuttgarter Zeitung geschafft. 🤩
#MECFSAwareness durch Kreativität. 😎
(Bildergalerie leider nur mit Abo einsehbar)

www.stuttgarter-zeitung.de/lokales/essl...
August 13, 2026 at 10:30 AM
mossthegaymer.bsky.social
Just realized we forgot to post this here... Woops
August 8th is Severe Myalgic Encephalomyelitis awareness day

we have so little energy right now and our migraine is starting to come at us with a vengeance.
#myalgicencephalomyelitis #mecfs #millionsmissing #mecfsawareness #severemecfs
Text on screen with a picture of a dark room with the only light coming from the sliver of the door that's open. Text: It's Severe ME (Myalgic Encephalomyelitis) awareness day. We wanted to make a more put together post for it but this is all we can do right now because we are entering a crash most days, for the majority of the day, this is what it looks like in our room A person laying covered by a blanket in bed with headphones and a purple heated eye mask on. Text on screen: we have blindfolds and noise cancelling headphones to try and help when it gets really bad but it's not always enough We need help to get food and meds. Help to sit up sometimes. Up until we got the power chair we needed help to get to the bathroom. Screenshot of a phone home screen that's dark and has a red filter over it. Text on screen: The light sensitivity is so bad. lots of the time we have to have a filter over our phone screen because even at its darkest setting it's too bright. This is a screenshot for example (third photo) Black background. Text on screen: We tried after a fall (due to how weak we we're getting) to do home PT. We followed the plan. It wasn't much. It was small exercises. And we just got worse. It sent us into PEM crash after PEM crash. Till we couldn't speak. It started as our words slurring and stuttering and being out of breath every few words to not being able to speak at all. The at home PT cancelled on us because we couldn't participate anymore. Doctors still try to say we should exercise more and don't understand just how bad it is. Back in April of this year we were more moderate. Then we pushed to much one day and became severe. Over the past few months we've only gotten worse. It didn't affect our cognitive ability that much until the past month. We are terrified of getting worse but we know we likely will. We don't know how to pace well and because we also struggle with tourretes we have uncontrollable tics that take a lot of energy from us. How are we supposed to pace with such an unpredictable, uncontrollable, painful problem?
August 13, 2026 at 8:42 AM
joeblow604.bsky.social
Next lighter cover is finished!

#crossstitch #eagle #lightercover #crafts #artwork #art #artist #brentmichaelstudios #bms #MyalgicEncephalomyelitis #mecfs #chronicillness #longcovid #langleyartist #bcartist #canadianartist #MECFSAwareness #SpoonieLife #ChronicallyIllArtist #AdaptiveCrafting #Pacing
A crossed stitched lighter cover of an eagles head with blue sky background A crossed stitched lighter cover of an eagles head with blue sky background A crossed stitched lighter cover of an eagles head with blue sky background A crossed stitched lighter cover of an eagles head with blue sky background
August 9, 2026 at 10:05 PM
tomkindlon.bsky.social
From @dougieslifewithmecfs on IG:
Today is severe ME awareness day. If you can please show love and support to this post for all the people suffering and having suffered from severe ME.

#mecfs #mecfsawareness #severemeawareness #severemeawarenessday #spoonie
August 8, 2026 at 10:13 PM
madeinmydarkness.bsky.social
(4/4)
#BrainfogSummerEdition #MECFSDeutschland #MECFSAwareness #Webcomic #dampfgegart #GuerillakunstImNebel #Gehirnsauna #Hitzewelle #RekordsommerImJuni #LebenMitMECFS #ChronischKrank #InvisibleIllness #Gehirnnebel #Pacing #PostExertionalMalaise #MorbusInvisibilis #LearnAboutME
June 25, 2026 at 6:22 PM
elpot.bsky.social
www.linkedin.com/posts/beate-...
Es bewegt sich etwas 💪
#mecfs #mecfsawareness #gesundheitsversorgung #patientenvertretung #vorarlberg #chronischeerkrankungen | Beate Schuchter
📢 Update zur Versorgung von Menschen mit ME/CFS in Vorarlberg Landesrätin Martina Rüscher hat unserer Betroffenenvertretung ein Informationsvideo zum aktuellen Stand der geplanten ME/CFS-Anlaufstelle...
www.linkedin.com
June 4, 2026 at 8:11 AM
pbmarkusoppel.bsky.social
🟢 ME/CFS-sensible Pflegeberatung bedeutet mehr Aufwand und geringerer Gewinn - und ich liebe es trotzdem (oder gerade deshalb?!).

ME/CFS-sensible Beratung sollte kein Sonderfall sein.

Sie sollte selbstverständlich sein.

#Pflegeberatung #MECFS #MECFSAwareness #PflegeberatungAufTour
Alt-Text (Barrierefreiheit): Quadratisches Social-Media-Sharepic in den Farben Grün, Weiß und Orange zum Thema „ME/CFS-sensible Pflegeberatung“. Im oberen Bereich steht groß die Überschrift „ME/CFS-sensible Pflegeberatung“. Darunter der Slogan: „Rücksicht, Respekt und Fachlichkeit. Für Menschen mit ME/CFS.“ Links ist ein Pflegeberater mit FFP3-Maske zu sehen, der vor einer Haustür steht. An der Tür hängt ein Schild mit der Aufschrift „Bitte Rücksicht auf Belastungsgrenzen“. Auf seiner Tasche steht „Pflegeberatung – Auf Tour für Menschen, nicht für Umsatz.“ Rechts befindet sich eine Checkliste mit Symbolen und den Punkten: FFP3-Maske, keine Düfte, kurze Termine, reizarme Umgebung, Händehygiene, Sauberkeit und Rücksicht sowie Belastungsgrenzen respektieren. Links neben dem Foto steht: „ME/CFS ist keine Frage der Effizienz. Sondern eine Frage von Schutz und Verständnis.“ Im unteren Bereich steht in großer Schrift die zentrale Botschaft: „Nicht maximal abrechnen. Sondern maximal schützen.“ In der Fußzeile befinden sich das Logo von Pflegeberatung Markus Oppel sowie die Aussagen „ME/CFS verstehen. Rücksicht nehmen. Gemeinsam Lösungen finden.“ und „Pflegeberatung auf Tour.“ mit dem Hashtag „#PflegeberatungAufTour“. Das Bild vermittelt einen respektvollen, professionellen und betroffenenorientierten Umgang mit Menschen, die an ME/CFS erkrankt sind, und betont Schutzmaßnahmen, Reizreduktion und individuelle Anpassungen während der Pflegeberatung.
June 1, 2026 at 10:22 AM
upfrontdev.bsky.social
Sending love to everybody affected by ME/CFS. It’s a long-term condition with a wide range of symptoms. Unless somebody has this condition they don’t know how exhausting it can be.

#MEAwarenessDay #MECFS #MECFSAwareness #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
May 30, 2026 at 7:51 AM
deeder.bsky.social
Every day, my husband works at trying to manage all his symptoms. I help him manage some. Things we've done to manage his #MECFS include restrictions on foods, eliminating WiFi/Cellular signals, air filtration, mold mitigation, & more.
#mecfsawareness #UnitedwithME #frailbutfighing #chronicillness
irishmecfsassoc.bsky.social Irish ME/CFS Association @irishmecfsassoc.bsky.social · May 21
21/

May is Myalgic Encephalomyelitis (M.E.) Awareness Month.

You can help by sharing and/or liking this image.

Day 21

#MEcfs #ChronicFatigueSyndrome
Did you know that MYALGIC ENCEPHALOMYELITIS (ME) also known as Chronic Fatigue Syndrome (CFS) has dozens of symptoms including widespread pain, cognitive problems, digestive problems, recurring infections, severe debilitating fatigue, insomnia, muscle weakness, light and noise sensitivity?
May 21, 2026 at 12:53 PM
deeder.bsky.social
I made 1 trip to the ED with my husband, and we decided that we'd never go back unless he is bleeding out. That's how awful the experience was. #mecfsawareness #chronicillness #MEaction
exceedhergrasp1.bsky.social It's ME(Jaime) @exceedhergrasp1.bsky.social · May 16
Oh my GOSH, thank you to the anonymous donor who just gave over $4,000 to this project!

We are now $211 from meeting our $15k match. Can we bring it home the rest of the way?
exceedhergrasp1.bsky.social It's ME(Jaime) @exceedhergrasp1.bsky.social · May 5
Our Emergency Department fundraising is on fire! Note: in order to make the best use of our $15k match, we need to raise $15k from other donors. We're so close! Can you get us a little closer?

millionsmissing.funraise.org/fundraiser/m...
May 17, 2026 at 12:36 AM
deeder.bsky.social
As we sat in the ENT's office, & we realized that my husband was going to be appointment-free until September. We get the summer off from Doctors. This is the excitement in the life of someone w/MECFS. #Chronicillness #mecfs #unitedwithME #MECFSawareness
May 16, 2026 at 12:38 PM
deeder.bsky.social
When I have been saying it's more than just tired, I mean it affects multiple systems in the body. #mecfsawareness #fibromyalgiaawarenes #UnitedForME #frailbutfighting #chronicillness
meassociation.org.uk ME Association @meassociation.org.uk · May 15
1/2: ME/CFS is a multi-systemic illness, meaning it can affect many parts of the body — including the immune, nervous, endocrine, and metabolic systems.

This graphic highlights some of the symptoms and changes people with ME/CFS experience every day.

#MECFS #pwME #MyalgicEncephalomyelitis
Diagram of the human body showing ME/CFS mechanisms. ME Association logo. Brain and Neurology • Neuroinflammation • Autonomic nervous system (ANS) dysfunction Muscle and Metabolic Activity • Mitochondrial dysfunction • Energy metabolism • Bioenergetic abnormalities • Muscle abnormalities • Post exertional malaise (PEM) Immune System • Activated immune system • Natural killer cells (NK) • T-cell dysfunction • Autoimmunity • Viral reactivation And more...
May 15, 2026 at 1:04 PM
taliasmith2021.bsky.social
In honor of ME/CFS Awareness Day today, this video dispels 6 common myths about ME/CFS. 👇🏼
youtube.com/shorts/eviZV...

#MECFSAwareness #mecfs #myalgicencephalomyelitis #chronicfatiguesyndrome #chronicfatigue #cfs #educationalpurposes #educational #informational #awareness
6 common myths about ME/CFS.
YouTube video by Talia Smith - Finding Vulneraries
youtube.com
May 15, 2026 at 12:30 PM
emergeaustralia.bsky.social
Make the Invisible Visible. PEM must be: Seen. Heard. Supported.

This #MECFSAwareness week we invite you to join the "Faces of PEM" campaign, a growing digital wall of people living with #PEM, and the supporters standing beside them.

Upload images. Find out more: zurl.co/XWqMN

#emergeaustralia
Promotional graphic for Emerge Australia’s ME/CFS Awareness Week "Faces of PEM" campaign launch. Soft blue background with text in a white box and a tight screen shot of the art wall at an angle. Text: The Faces of PEM is a growing digital wall of people living with PEM, and the supporters standing beside them. Together, these faces form a living mosaic showing that people with PEM are here, visible, and deserving of recognition. Emerge Australia logo is in the top left corner.
May 14, 2026 at 10:00 PM
deeder.bsky.social
ME/CFS is more than just being tired all the time. It comes with a gang of partners that reduces the quality of life. #mecfsawareness #fibromyalgiaawarenes #UnitedForME #frailbutfighting #chronicillness
May 14, 2026 at 12:01 PM
lufalda.bsky.social
09.05.2026 - Liegenddemo für ME/CFS - Ignoranz tötet!

@whatthefuckizzy.bsky.social

#mecfsawareness #myalgicencephalomyelitis
May 13, 2026 at 3:04 PM
taliasmith2021.bsky.social
In honor of ME/CFS Awareness Day this month, this video discusses why so many people that are floxed have ME/CFS.
#mecfsawareness #mecfs
#myalgicencephalomyelitis
#chronicfatiguesyndrome #chronicfatigue #cfs #educationalpurposes #awareness #floxed #cipro #Ciprofloxacin
May 13, 2026 at 12:18 PM
dsavannah.bsky.social
I'm tired. I'm still sick. I often feel I'm screaming into the void. I haven't updated my blog since 2021 (!!!). However, many of the posts are still valid, and you can read them at dsavannah.com/blog/index.p....

#FrailAndFurious
#MyalgicEncephalomyelitis #LongCovid
#DisabilityJustice
#MEcfsAwareness Archives - dSavannahRambles
dsavannah.com
May 12, 2026 at 9:44 PM
desater.bsky.social
Für alle, die es eventuell wegen dem englischen Post nicht gesehen haben. Heute ist ME/CFS Awareness Day. Auch bei #PastPuzzle.

Ich habe heute schon unglaubliche Nachrichten von Betroffenen und Angehörigen bekommen, die mich teilweise ehrlich zu Tränen gerührt haben. #mecfs #mecfsawareness
desater.bsky.social Tom @desater.bsky.social · May 12
I was asked if I could use PastPuzzle’s reach to raise awareness about this terrible and overlooked disease. Of course!

Join in on the daily history game and spread the word to your friends and family: www.pastpuzzle.de

#mecfs #pastpuzzle #history #mecfsawareness #mecfaawarenessday
A square infographic with a dark background featuring a pale man lying on his side on a large brown pillow. He is wearing a sleep mask and heavy noise-canceling earmuffs, illustrating extreme sensitivity to light and sound. The text at the top reads: "When did the WHO first classify ME/CFS?" Followed by the subtitle in italics: "The illness that likely affects more than 40 million people worldwide." At the bottom, there is a grey call-to-action button that says: "GUESS THE YEAR IN FOUR ATTEMPTS!" Small text at the very bottom credits the image: "Picture: Lea Aring and Deutsche Gesellschaft für ME/CFS".
May 12, 2026 at 4:56 PM
bigbolle.eurosky.social
Die lieben Menschen von @blackmosquito.bsky.social haben einen #MEcfsAwareness Sticker rausgebracht!
Bitte fleißig bestellen! 🫶

#MEcfs
May 12, 2026 at 4:53 PM
crankycyborg.bsky.social
It’s #ME/CFS_AwarenessDay
#mecfsAwareness

#LongCovid #PEM #PEM_Crashes
May 12, 2026 at 4:27 PM
openmedf.bsky.social
May 12 marks International ME/CFS Awareness Day. This year we asked our community to share the questions they live with because of #MECFS Here are some of their responses.

Visit https://www.omf.ngo/maymomentum/ to join us in raising awareness.

#MECFSis #MECFSAwareness
May 12, 2026 at 4:19 PM
jewstein3000.bsky.social
For World ME Awareness Day, I talk about this damned disease and why producing the @BubblePeoplePod podcast was possibly literally killing me!! www.tiktok.com/t/ZTkT4gxaG/
This podcast is killing me! Reflections on World ME Awareness Day and how some of us struggle to make media happen! #worldMEawarenessday #longcovid #disability #mecfs #mecfsawareness
TikTok video by bubblepeoplepodcast
www.tiktok.com
May 12, 2026 at 3:56 PM
deeder.bsky.social
Why did my husband develop ME? Is it genetic? Is it from trauma? Can we fix it? Can anyone help? Millions of people worldwide are crying out for help. #frailbutfighting #unitedwithME #mecfsawareness #missingmillons
INTERNATIONAL ME AWARENESS DAY - 12 May Doctors can't tell you much about ME/CFS. They can't tell you why you have it, why you can't get better or even if you'll recover. Without more research into ME they'll never have any answers. May is M.E. Awareness Month. Every day this month I will post something about M.E. Please share to help raise awareness and challenge misconceptions about this illness.
May 12, 2026 at 2:06 PM