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#MEawareness

Tom Kindlontomkindlon@disabled.social
2025-06-06

A Quiet Storm, an online gallery with art from people severely affected by ME

aquietstorm.me/about

#MEawareness @mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

Logo for A Quiet Storm A Platform for Awareness We created this project to spread awareness about ME/CFS and to provide a platform for those severely affected to share their art—our art. Because of the debilitating nature of this illness, many of us are unable to display our work in in-person galleries. Our community as a whole often goes unnoticed by the world. We hope to change that, even if it is only a fragment. A Quiet Storm is founded and run by volunteers with ME/CFS, many with severe forms. This site is a testament that although we may be too ill to accomplish things individually, together as a community, we can achieve great things.
Fatigatio e.V.FatigatioeV
2025-06-06

"Long-Covid-Kolumne: Warum man Krankheit nicht immer sieht"

Autorin @marga_owski schreibt in ihrer neuen Kolumne in der @apothekenumschau über ihre ME/CFS-Erkrankung.

fcld.ly/stokowski_aussehen

Cara Sutracarasutra@kinkycats.org
2025-06-05

#ChronicFatigue #CFS #MyalgicEncephalomyelitis #MEcfs #InvisibleIllness #ChronicIllnessAwareness #SpoonieLife #PacingNotPushing #PostExertionalMalaise #ChronicFatigueSyndrome #MEAwareness #SpoonieSupport

Juchtijuchti
2025-06-05

Lotties Spendensammlung für mehr Forschung zu läuft noch. Wenn ihr etwas erübrigen könnt, bitte spendet. Wenn nicht: auch das Teilen hilft. Hier, im Whatsapp-Status, auf Insta, wo auch immer ihr so "unterwegs" seid. Endspurt.

Über 620.000 Betroffene in Deutschland werden aktuell noch komplett im Stich gelassen. Für nicht wenige ist das gesamte frühere Leben weg, sie sind komplett haus- und bettgebunden.

betterplace.org/de/fundraising

Juchtijuchti
2025-06-05

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:
vimeo.com/ondemand/chronically

"Chronically Ignored" is an investigative documentary about a dark chapter in the history of medicine.
1/

ahimsaahimsa_pdx@disabled.social
2025-06-03

@longcovid @mecfs

More quotes:

"This gap in clinical education isn’t just an Australian issue — it’s global.

In the U.S., training initiatives like Project ECHO have made strides in supporting providers but are now facing potential cuts under the Trump administration.

Meanwhile, advocacy groups and research centers are stepping in where institutional systems fail."

#LongCovid #MEcfs #ChronicIllness #HealthCare #MedEd #MEAwareness

"We don’t have evidence of full [emergency] departments undergoing any of our training … At a national acute care conference a few years ago, multiple ED nurses told us they’d never even heard of ME/CFS." - Kate Herbert, Emerge Australia
Juchtijuchti
2025-06-01

Gibt es Berliner*innen, die bereit wären, für in regelmäßigen Abständen Mahnwachen vor dem Bundestag abzuhalten? Ähnlich wie "Fridays for Future", nur für ? Ist vielleicht eine Schnapsidee, aber ich werfe es mal in den Ring.

1/

ahimsaahimsa_pdx@disabled.social
2025-05-31

New video from #MEAction

"The #MillionsMissing Share Their Stories 2025"

youtube.com/watch?v=BTCqXA1p8O

"…a small sampling of the Millions Missing. You sent in your photos and a few words for us to display at #MillionsMissing 2025.

These stories deserve to be told. Each person deserves to be seen. And know that they represent so many others."

Still images here:

meactions.org/the-millions-mis

@mecfs @longcovid

#MEcfs #PwME #LongCovid #PwLC #MEAwareness #MillionsMissing #Disability #DisabilitySOS

FriekeFrieke72
2025-05-14

Started watching a compilation of videos of Ren's life 2013-2018 Made by a fan. It starts with his struggle with . A young guy, very creative, searching for solutions.
I've only started but think it's well worth watching in this month.
youtu.be/QKxInpAB2no
@mecfs @longcovid

White text on black: For the past 5 years | have been suffering with M.E. and suspected bipolar mood disorder. Last year my illness progressed to teh point where for most of my life | was bedbound, and feeling suicidal. | found strength and determination not to let this illness beat me and | managed to recover to the point of being able to walk around again. However | am still sick. To date there is very little medical help available for sufferers of such a misunderstood condition. This is my 60 day attempt to cure myself of M.E. through strict diet, positive attitude, life style changes, and healthy living. If this can help just one person find hope or releif, then it was all worth it. Compilation of 9 stills from the YouTube.
Robot DiverRobotDiver@starlite.rodeo
2025-05-12

I should add that in spite of my diagnosis, I have been offered no medical support other than an offer to see a psychiatrist and I am still on a two year waitlist to see a specialist.
So many of us are abandoned following diagnosis. I have have had to research and actively advocate to receive any type of medication or specialist referral. Low dose naltrexone has offered me some help, as has active rest. Meeting people within the M.E. community has been my sole lifeline to hope and education. I would be homeless without the love and support of my partner.

#mecfs #meAwareness

KPasaKpasa@med-mastodon.com
2025-05-12

Today is international ME Awareness Day and the day of the #MillionsMissing protest at the US Capitol. #ME_CFS #LongCovid #pwME #MEAwareness #MECFS #COVID #CovidIsNotOver

ahimsaahimsa_pdx@disabled.social
2025-05-12

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

#MEcfs #LongCovid #POTS #MillionsMissing #Dysautonomia #MEAwareness #WorldMEDay

ahimsaahimsa_pdx@disabled.social
2025-05-12

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:

meaction.net/stoprestpace/

It has links to a few different pacing and management guides.

6/n

@mecfs @longcovid

#MEcfs #LongCovid #MillionsMissing
#MEAwareness #WorldMEDay

ahimsaahimsa_pdx@disabled.social
2025-05-12

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

@mecfs @longcovid

#MEcfs #SevereME #MEAwareness #WorldMEDay

A six panel comic by Kornelia Paulsen. Panel 1: "M.E. - How it can shrink one's life bits by bits" (text only) Panel 2: "Before M.E." The drawing shows a house, mountains with a campsite (tent and campfire), and several buildings that are labeled work, cafe, and gym. In the middle is a banner saying "Party!" with a birthday cake and balloons. In the sky is an airplane labeled "Travel." Panel 3: "Mild M.E." This drawing shows only two buildings, work and house, sitting on top of high pillar with PEM rocks below. (PEM stands for Post Exertional Malaise) Panel 4: "Moderate M.E." Now the only building is a house sitting on top of high pillar with PEM rocks below. Panel 5: "Severe M.E." Now there's no building at all, just a person lying in a bed on the high pillar with PEM rocks below. Panel 6: "Very Severe M.E." This caption is written in white text on a completely black panel.
ahimsaahimsa_pdx@disabled.social
2025-05-12

@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

ahimsaahimsa_pdx@disabled.social
2025-05-12

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:

mayoclinicproceedings.org/arti

2. "ME/CFS Basics" from the CDC:

cdc.gov/me-cfs/about/index.htm

4/n

@mecfs @longcovid

#MEcfs #MedEd #MillionsMissing #MEAwareness #MEAwarenessDay #WorldMEDay

ahimsaahimsa_pdx@disabled.social
2025-05-12

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:

youtube.com/watch?v=wxSwYUennB

3/n

@mecfs @longcovid

#MEcfs #PwME #PEM #PESE #LongCovid #MillionsMissing #MEAwareness #WorldMEDay

ahimsaahimsa_pdx@disabled.social
2025-05-12

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

@mecfs @longcovid

#MEcfs #PwME #MillionsMissing #MEAwareness #WorldMEDay

ahimsaahimsa_pdx@disabled.social
2025-05-12

💙 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

#MEcfs #LongCovid #PostCovid #Disability #DisabilitySOS #CovidIsNotOver #MillionsMissing #MEAwareness #WorldMEDay

I am one of the 2025 Millions Missing calling out an SOS: Save our support systems. Save our science. Save our society.
Juchtijuchti
2025-05-12

Another post from Bettina Grande. She is summarizing the talks given at today's International MECFS Conference for those who cannot follow them online.

"Jürgen Steinacker, Ulm
Muscle biopsies show: Mitochondria are structurally damaged in and PCS – cristae destroyed, sarcomeres affected.
EPILOC data: 43% still sick after 17 months. Calling this just “fatigue” misses the mark entirely."

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