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#meawareness

8 posts6 participants2 posts today
Public
Frieke

Sunday Singalong Song!
Link to Instagram to the very creative Alice 💙
instagram.com/reel/DJgiNNbNNnT
#MEawareness #LongCovid
@longcovid @mecfs

InstagramAlice Ella on Instagram: "They say laughter is the best medicine, but sadly, there ain’t no medicine for M.E. and no amount of laughter is gonna treat it 😅 *BUT* I hope that during this ME Awareness week (which starts now) I can make a few of you laugh, or feel less alone, help to educate some people who might not know much about it, or just raise some more awareness and understanding cos farckin ‘ell we need it ✨ 💙 Sooo, ME is short for Myalgic Encephalomyelitis - Myalgic:
from the Greek ‘myo’ muscle and ‘algos’ pain. Encephalomyelitis:
‘encephal’ inflammation of the brain, and ‘omylitis’ the spinal cord. 💙 It’s a biological illness – ME disrupts the metabolism, brain, immune system, and autonomic nervous system. 💙 Post-Exertional Malaise (PEM) is the hallmark symptom – Even minor physical or mental exertion can trigger a severe worsening of symptoms, sometimes lasting days or longer. 💙 It affects millions worldwide – About 75% of those with ME are women, and at least 25% of patients are so severely affected that they are housebound or bedridden. 💙 Exercise can be harmful – Unlike other chronic conditions, structured exercise programs often worsen symptoms. Pacing - balancing activity and rest - is recommended instead, but isn’t a treatment. 💙 There is no cure – Treatment focuses on symptom management, as there is no known cure for ME. 💙 It’s often misunderstood – Many people mistakenly believe ME is just extreme tiredness, but it’s a complex, debilitating condition. Ok that’ll do for now! More in my next post soon 😙 Please share and help us raise awareness and understanding this ME Awareness week 🤞🏻💙 Love and spoons 🥄 ✨ Video Description in comments 💙 #MillionsMissing #GoBlueForME #LongHaulers #PostViral #MyalgicE #PWME #MillionsMissing2025 #CanYouSeeMENow #MECFS #MyalgicEncephalomyelitis #InvisibleIllnessAwareness #ButYouDontLookSick #YouDontLookSick #InvisibleIllness #Spoonie #SpoonieWarrior #Spoonies #MEWarrior #ChronicIllnessWarrior #SpoonieSisters #ChronicIllness #ChronicIllnessAwareness #MEAwareness #CFSME #LongCovid"46 likes, 9 comments - itsaliceella on May 11, 2025: "They say laughter is the best medicine, but sadly, there ain’t no medicine for M.E. and no amount of laughter is gonna treat it 😅 *BUT* I hope that during this ME Awareness week (which starts now) I can make a few of you laugh, or feel less alone, help to educate some people who might not know much about it, or just raise some more awareness and understanding cos farckin ‘ell we need it ✨ 💙 Sooo, ME is short for Myalgic Encephalomyelitis - Myalgic:
from the Greek ‘myo’ muscle and ‘algos’ pain. Encephalomyelitis:
‘encephal’ inflammation of the brain, and ‘omylitis’ the spinal cord. 💙 It’s a biological illness – ME disrupts the metabolism, brain, immune system, and autonomic nervous system. 💙 Post-Exertional Malaise (PEM) is the hallmark symptom – Even minor physical or mental exertion can trigger a severe worsening of symptoms, sometimes lasting days or longer. 💙 It affects millions worldwide – About 75% of those with ME are women, and at least 25% of patients are so severely affected that they are housebound or bedridden. 💙 Exercise can be harmful – Unlike other chronic conditions, structured exercise programs often worsen symptoms. Pacing - balancing activity and rest - is recommended instead, but isn’t a treatment. 💙 There is no cure – Treatment focuses on symptom management, as there is no known cure for ME. 💙 It’s often misunderstood – Many people mistakenly believe ME is just extreme tiredness, but it’s a complex, debilitating condition. Ok that’ll do for now! More in my next post soon 😙 Please share and help us raise awareness and understanding this ME Awareness week 🤞🏻💙 Love and spoons 🥄 ✨ Video Description in comments 💙 #MillionsMissing #GoBlueForME #LongHaulers #PostViral #MyalgicE #PWME #MillionsMissing2025 #CanYouSeeMENow #MECFS #MyalgicEncephalomyelitis #InvisibleIllnessAwareness #ButYouDontLookSick #YouDontLookSick #InvisibleIllness #Spoonie #SpoonieWarrior #Spoonies #MEWarrior #ChronicIllnessWarrior #SpoonieSisters #ChronicIllness #ChronicIllnessAwareness #MEAwareness #CFSME #LongCovid".
Public
Frieke

May 12th is #MEawareness day. I'm 2 years in after covid19 infection in February 2023. It took my work, my social life, most of my hobbies. 90-95% housebound.
(Bell score 20-30, Funcap about 3,3 or ''severe' in the categorisation of Whitney Dafoe)

Medicine like propanol, fludrocortison and LDN and supplement of salt and lots of water, and of course pacing and yoga nidra made it a bit better to bear. From 22 hours a day horizontal, I got to 18-20 hours lying on couch or in bed.
@longcovid

Poster: myth versus fact. Fact: many LongCovid patiënts have symptoms that match ME. My text: neurocognitive problems, orthostatic intolerance and PEM is my chronic illness. Cure mecfs and longcovid. Photo of me on saddle chair in kitchen and selfies with sunglasses with sleeping mask and hoodie and sunglasses
Public
Tove Harris 2. Account

Hamburg Rathausmarkt, 11. Mai (12:00-15:00):
Liegenddemo anlässlich des Internationalen ME/CFS Awareness Day (12.5.)
Reden u.a. von Prof. Dr. Stark und den Politikern Jasper Balke (Grüne SH), Timo Fischer (FDP HH), Deniz Celik (Linke HH).
SPD Hamburg❓Grüne Hamburg❓Hamburger Senat ❓

Weitere Infos zum Internationalen ME/CFS Awareness Day 2025, Aktionen vom 10. bis 12. Mai:
fatigatio.de/aktuelles/detail/

Plakat mit Programm für die Liegenddemo am 11.5.2025 in Hamburg (Rathausmarkt, 12:00-15:00) anlässlich des Internationalen ME/CFS Awareness Day 2025. 11:45 Treffen am Flaggenplatz am Jungfernstieg 12:00 Trauergang zum Rathausmarkt 12:15 Begrüßung ab 12:20 Reden von Jasper Balke (Grüne SH), Gritli Faulhaber (moderat Betroffene Schweiz), Prof. Dr. Stark, Frau Dr. Lange-Riechmann (Vorstand Fatigatio e.V.), Timo Fischer (FDP HH), Katrin Wölfel (nichtGenesen Kids Hamburg), Deniz Celik (Linke HH). Zwischen den Reden: 12:55 Liegenddemo - Stimmen der Betroffenen (10-minütige Audio) 13:40 Lemon-Challenge für die Forschung (Initiative der ME/CFS Research Foundation) Plakat von Initiative #LiegendDemo
#MECFS#LiegendDemo#MECFSAwarenessDay
Public
ahimsa

🗣️ Help us send out a strong SOS message on May 12th, International ME/CFS Awareness Day

This video from Laurie Jones, executive director of #MEAction, invites you to join our protest in Washington, DC, or online

Please join us - we need as many folks as possible!

More details here:

meactions.org/millionsmissing2

Thank you! ❤️

(see replies for full text of the video)

@mecfs
@longcovid
@disability

#MEcfs#PwME#LongCovid
Public *
ahimsa

🚨 On May 12, International ME Awareness Day, #MEAction will be sending out an SOS for ME/CFS and Long Covid 🚨

SOS = Save our support systems. Save our science. Save our society.

A protest will be held at the Capitol in Washington, DC, and folks can also join in from home

#MEAction encourages all folks with disabilities to join!

More details / toolkits here:

meactions.org/millionsmissing2

Please boost! ❤️

@mecfs @longcovid
@disability

Cartoon protest art with detailed, dark lines depicting the Statue of Liberty sinking to her crown in bright red liquid. She holds her torch high above an ocean of red next to the words "#Millions Missing SOS". Additional text says, "May 12, 2025, Protest - Washington, DC & From Home. 2025 #MillionsMissing" Artwork by Jessica Kaushansky.
#MEcfs#MillionsMissing#LongCovid
Public *
ahimsa

I missed this back when it was first published:

"The hermeneutical injustice of ME"

thereforme.uk/p/the-hermeneuti

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

"Hermeneutical injustice [is] when someone is unable to understand or express an important aspect of their own experience because there is a gap in the shared tools of social interpretation." - Ella Barnard, #ThereForME
#MEcfs#PwME#ThereForME
Public *
ahimsa

#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!

meaction.net/2025/04/08/why-we

Here's how to sign up

Meeting 1: Thursday, April 10, 12 pm Pacific, 3 pm Eastern

us06web.zoom.us/meeting/regist

Meeting 2: Thursday, April 10, 3 pm Pacific / 6 pm Eastern

us06web.zoom.us/meeting/regist

@mecfs

#MEAction Network · Why We’re Sending out an SOS this #MillionsMissingOn May 12th, #MEAction and the #MillionsMissing are sending out an SOS to Congress to Save our Support Systems. Save our Science. Save Our Society.  HERE’S WHY: Healthcare, research funding and accessibility were already incredibly fragile for people with myalgic encephalomyelitis (ME), Long Covid and the disability communities. Now, we are seeing constant threats to … Why We’re Sending out an SOS this #MillionsMissing Read More »
#MEcfs#PwME#MEAwareness
Public
ahimsa

News from #MEAction - planning for #MillionsMissing 2025 (May 12)

"If you are interested in organizing a protest, gathering in a park as a community or making art, please join one of our protest organizing meetings on Thursday, April 10"

Meeting 1: Thursday, 4/10, 12pm PT/3pm ET
us06web.zoom.us/meeting/regist

Meeting 2: Thursday, 4/10, 3pm PT/6pm ET
us06web.zoom.us/meeting/regist

Details:
meaction.net/2025/04/02/millio

@mecfs

Join Us for Millions Missing 2025 - (USA) Join the protest at the Capitol in Washington, D.C. - Host your own #MillionsMissing protest or gathering - Show up on social media on May 12th - Get creative—create SOS art with messages directed at your government/elected officials - Check out UK’s #MillionsMissing campaign—coming soon!
#MEcfs#PwME#LongCovid
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