ME Awareness Day, patient groups call for more research

scienceMay 12, 2026661,075

On ME Awareness Day, patient groups including MEActionUK called for more research into ME/CFS and for improved care for severely affected, often bedbound, patients. The Chartered Society of Physiotherapy's Frontline published "Do no harm: supporting people with ME/CFS," reaching over 67,000 UK physiotherapists and urging cautious, individualized rehabilitation approaches. WatchME app v2.10 for iPhone and Apple Watch launched, free and with no data collection, to help people with ME/CFS manage daily pacing on IOS 17 and watchOS 10. Campaigners also highlighted testimony to the UK Covid-19 Inquiry about children with Long Covid, warning that without formal diagnosis many children remain invisible to health and education services.

James L. Sutter

@jameslsutter.bsky.social

It's Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) day of awareness. For the last 8 years, my wife has been bedbound. She can't bathe, can't watch TV, can't get herself to the bathroom, often can't speak. There are MILLIONS of people with her condition—but you never hear about it.

12744d ago

Adam

@abrokenbattery.bsky.social

Today is #MEAwarenessDay ME/CFS is often described as neglected and under-researched. That ignores the true history. George Monbiot and Carol Monaghan have described it as one of the greatest medical scandals of the 21st century.

George Monbiot and Carol Monaghan quotes

6945d ago

Tom Kindlon

@tomkindlon.bsky.social

I actually deteriorated over time, through following exercise, like many others with #MyalgicEncephalomyelitis. Improving or even stabilising is not the only possible outcome following an infection Plenty of research shows a significant percentage of those with #LongCovid satisfy #MECFS criteria 1/

5745d ago

Dis 🏳️‍⚧️

@disislost.bsky.social

Today is ME/CFS awareness day. Myalgic encephalomyelitis/chronic fatigue syndrome. If you know anyone that has it, try to check in on them today. It is a debilitating illness. #ME/CFS #CFS #Chronicfatigue

4345d ago

Luminouslyiii ✨⚔2

Stay strong 🫂 We're both doing our best

Miles W. Griffis

@mileswgriffis.bsky.social

Today is International ME Awareness Day 💙. Thousands gathered across 42 cities in Germany this weekend to make demands for research, support, & education. The mass "lie down" protest was organized by the group #LiegendDemo. 📝:@heatherhogan.bsky.social thesicktimes.org/2026/05/12/t...

4644d ago

Sam

@humanmanifold.bsky.social

Ich war eben in der Apotheke und habe mehrere der Medikamente gekauft. Bezahlt habe ich 425€. Auch das ist die Realität: ME/CFS-Behandlung muss man sich leisten können. Und leider wurde mit der offiziellen Off-Label-Liste die Chance vertan, daran etwas zu ändern. #MECFS #LongCOVID

4345d ago

Ezra S

@ezra.zone

It's ME/CFS Awareness Day. A great day to watch Unrest, get mad, and realize that this is a common medical condition with virtually no support www.youtube.com/watch?v=XOpy...

2944d ago

Physios For ME

@physiosforme.bsky.social

This #MEawarenessDay we are delighted to have an article published in in the Chartered Society of Physiotherapy's magazine "Frontline", which goes out to all chartered physiotherapists in the UK (that's over 67,000!) www.csp.org.uk/frontline/ar...

3045d ago

Physios For ME6

The article is called: "Do no harm: supporting people with ME/CFS. How can physiotherapists provide effective therapies while ensuring patients with this debilitating condition feel safe and supported? "

Merrydholl

@maryeilmicdom.bsky.social

Today is #MEAwarenessDay #GlobalMEDay I'm sending my love to everyone afflicted, especially those for whom every day is truly unbearable. Whilst we're all part of the #MillionsMissing from life, no-one is forgotten 💙🤍💜

3245d ago

Melissa Mazur

@phillyphile215.bsky.social

Philly Philly representin’ again this International ME Awareness Day, thanks to @tinayesenofski.bsky.social @solveme.bsky.social and @pecoconnect.bsky.social 👏👏👏 Scrolling atop the Philly skyline May 11-13th! #LightUpForMECFS #MEAwarenessDay2026 #InternationalMEAwarenessDay #MEcfs

2345d ago

v. ashley

@vashetc.bsky.social

today is a bummer, hope those w/ this horrid disease will find some ease 💙

me/cfs awareness day, a picture of a person in bed holding a heart painting

2245d ago

Casey Doherty

@caseydoherty.bsky.social

Today is Myalgic Encephalomyelitis (ME) Awareness Day. It's a complex, chronic neurological disease that affects at least 15-30 million people worldwide (but likely far, far more). ME, caused by tick borne diseases and COVID for me, has changed my life completely.

Casey, a white woman with long blonde hair, sitting on a front stoop. She is wearing a red shirt that says “Still Sick Still Fighting” and black leggings.

2844d ago

Niko Suvisto

@nikosuvisto.com

This photograph, titled ‘Suffocated’, was my submission to the A Quiet Storm’s online group exhibition ‘Myalgic Encephalomyelitis Kills’, which launched today on the International ME/CFS Awareness Day. 1/10 www.aquietstorm.me/myalgic-ence... #MECFS #Photography #OnlineExhibition

A grainy black-and-white photograph of a fist holding a white rose against a black background.

2645d ago

Cheeky Pockets 🌈🐹

@cheekypockets.bsky.social

It's Fibromyalgia Awareness day so I made a little comic sharing a tiny bit of what I go through living with this chronic condition 💜 #fibromyalgia #chronicillness #invisibledisability #disabledartist

A 4 panel comic about Fibromyalgia.
The first panel is a small drawing of myself arms and legs out with lines over the body to display pain. The text says "widespread body pain, tenderness, and sensitivity. Ranging from a variety of types of
aches, jabs, shocks and stabbing pains in my joints ,bones, muscles. As well as an increased sensitivity where poking and touch hurt."

The 2nd panel is a drawing of me trying to move through black sludge, the text says "Fatigue and difficulty sleeping. I wake up constantly through the night, and despite sleeping for up to 12 hours, I feel unrested, stiff and tired. On the worst days moving feels like there are weights strapped to my body, or like moving through sludge, It's exhausting doing the smallest tasks."

The 3rd panel is a drawing of a table with questions marks around a very blurred text saying "table". The other text says "Brain fog slash fibro fog. Difficulty remembering words, information thinking clearly, speaking, concentrating, thinking quickly. It feels like everything I know is hidden in this fog."

The last panel is a drawing of me crying with my hands on my head with the text "temperature sensitivity, weather changes make it worse, headaches slash migraines" around me. The other text says "and so much more...There's a variety of symptoms, some personal that I don't really want to disclose. Some days are worse than others and I'm at a point where the I'm used to a certain level of pain now."
There's some faded text at the bottom saying "These are my own person experiences, it might not be the exact same for everyone with fibromyalgia."

1744d ago

Pillow Writers

@pillowwriters.bsky.social

#MECFS Stop and give us a wave if like us you’re reading this in bed. ME/CFS awareness day is heartbreaking. So many of us alone and isolated. We send our 🩵 to you all.

2345d ago

ME Awareness Day, patient groups call for more researchscience PCOS renamed polyendocrine metabolic ovarian syndrome (PMOS)science James Webb reveals ultramassive black holes and dusty star formationscience 18 people quarantined in US after hantavirus cases tied to cruise shipscience

ME Awareness Day, patient groups call for more research

Related