M.E. #MyalgicEncephalomyelitis One of the loneliest and most abandoned diseases on the planet that no one wants to know about. Share to support #pwME and our amazing, tenacious, beautiful, intelligent, and creative #community #MEawareness #MEawarenessMonth

Watch the full program BBC Lifeline for Action for ME (9 mins) www.bbc.co.uk/iplayer/epis... Lifeline donation page donationportal.co.uk/lifeline/app...

“She actually asked me a couple of times, you know, am I going to die? She felt so unwell.” Isla is 10 and developed #MECFS after a COVID infection. She is 95% housebound and just wants to “have fun and do things with her friends”. From BBC Lifeline: Action for ME

And #ME isn't like other illnesses #ME isn't accurately taught at MedSchool Many Drs don't follow the @nicecomms.bsky.social g'lines for #ME Funding for biomedical research into ME is far lower than other illnesses #ME is widely stigmatised #pwME are dying unnecessarily under @england.nhs.uk care

A gentle reminder for my next session,for those in #Sunderland well enough to attend £3 -all dates up until September now available to view, for those who have the luxury of being able to attend most things they pre-arrange in their calendars! #Souter #pwME www.nationaltrust.org.uk/visit/north-...

Hurry, hurry. Less than 2 weeks to go before the deadline for in-person registration to the Young EMERG symposium for early career researchers in ME/CFS (25th & 26th May), Hinxton Hall, Cambridge #pwME #MEcfs

Hi! Our online art gallery, A Quiet Storm, will host an open call group exhibition on International ME/CFS Awareness Day, May 12, 2026. The submissions will open on March 12th. Our website is currently updated to a dark theme. Full statement below! 1/9 #MECFS #pwME #OpenCall #OnlineExhibition

"Hi, I’m Madeleine. I’m living with M.E. (MyalgicEncephalomyelitis - post-viral), Fibromyalgia, and symptoms of Long Covid. Since the end of 2008 I’ve been unable to join full classes without suffering the brutal consequences of PEM/PENE (Post Exertional Neuro-Immune Exhaustion)…

It's official ! I'm hoping between us we've done our best to avoid causing distress to anyone in our community because this is for those of us #pwME who are able to leave the house occasionally ... the event listing is now live: www.nationaltrust.org.uk/visit/north-...

🧵 "How medical training promotes medical gaslighting" by K. Johnstone mecfs.substack.com/p/how-medica... This is not illness specific. #chronicillness #hiddenillness #invisibleillness 1/

Columbine flower Colorado. 📷 Marilyn S.

I just found out that tiny little field mice climb into flowers like tulips and take little naps in them like hammocks and I feel like this information is too important for me not to share with anyone. 🥹

TRAILER: Buried Alive with M.E. I’ve spent the last months making a film for M.E. Kills, an online exhibition by A Quiet Storm. People with ME die every week. Many more are left to rot in dark rooms without care, disbelieved and dismissed. It’s a living death. #pwme #millionsmissing #severeME 1/

Professor Chris Ponting on how findings from the largest genetic study in #MECFS show “there is an organic disease called ME”. “We’ve had letters from GPs saying we have changed their minds” Clip from Hope 4 ME & Fibro NI Collaboration

Description from Science for ME @scienceforme.bsky.social forum’s weekly update: “This blog post, an overview of research findings on the immune system in ME/CFS patients, concludes that ‘current data do not suggest that (low-grade) inflammation is a key driver of ME/CFS symptoms’” #MEcfs #PwME #CFS

Long COVID can affect anyone — regardless of age, health status, or how mild their initial infection seemed. Preventing infection and reinfection of COVID-19 is the best way to avoid Long COVID.

📢 Did you know that BuDS is one of the most respected information providers for disabled people in England? 📢 A thread 🧵(1/3) buds.org.uk/information/

Still cant believe we are now trying this for virtually anything but there is still no single pilot, test, experiment of car-t for #pwME.

It would be great if ME ResearchUK could also receive some of the funds raised too for the great work they do as well as the ME Association - I wish them all the best! Great idea to take a ukulele along too 💙

Wonderful advocacy…. There has been a lot of research over the years albeit much of it has been ignored! This is a great way to bring awareness and make us more visible as many have done who just don’t get the publicity #pwME #MyalgicEncephalomyelitis

"don’t criticise the psychologisation of ME because I feel stigmatised by mental illness; I criticise it because it doesn’t fit the facts" "the lack of even the will to understand it among people whose job it is to do so is more traumatic and it is culpable" 1/2

#pwME URGENT - looking for someone ME literate who can sit with Savannah in hospital in London from 4:30pm TODAY for a few hours. Travel will be reimbursed. Please share widely #SaveSavannah #SevereMErgency @tomkindlon.bsky.social @abrokenbattery.bsky.social @drelke.bsky.social

The skies have been grey for a while here, but I’m remembering these beautiful blues… light and shade, the dark to appreciate the light 🌟sending love to the blue sky community 💙 ☁️💙

I'm glad so many clinicians are voting with their feet. These modules are not fit for purpose, being ill informed about #ME (sic) and not educational either. Patients, their families, clinicians and researchers deserve a LOT better.

Yes please @shaunlintern.bsky.social can you ask why Labour didn’t follow the WHO guidance from August ‘24 which has led to everything being overloaded. We have 1,100 in hospital a day with COVID currently. They are also ignoring the CATA advice and Covid is clearly airborne. We need ffp3 masks.

bsky.app/profile/elho... I’ll post a few threads with links & research children shouldn’t have caught one infection.

The Manchester Evening News, England. 27th January 1998. #mecfs #cfsme #myalgicencephalomyelitis #myalgice

media.licdn.com/dms/document... 9 easy read slides on mitochondria & immunity. Describes #ME symptoms in graphic biochemical detail. 2025 #pwME #LongCovidME #MedSky

2023- 1 in 5 Doctors had long covid. 1 in 4 nurses also have long covid. We will end up at a tipping point without action, with gaps throughout the labour force and at that point it will be very hard to turn things around. www.bma.org.uk/media/7318/b...

Now let’s see…. How many donations, stories, tradgedies, abuse, gaslighting and STILL where are we in 2026? Absolutely SHAMEFUL #MyalgicEncephalomyelitis

Rise and shine, it's the final day of #BigGardenBirdwatch! Remember, you can still take part even if you haven't signed up. Help us spread the word: share this post, text someone, or tell the whole table over your Sunday roast. The more data we get, the better 🧑🔬

You’d think this is made up. That it can’t be true But then you read about the death of Maeve Boothby-O’Neill and others and you realise it’s happened before - it’s absolutely unbelievably cruel and bizarre #MEcfs

This is awful pmc.ncbi.nlm.nih.gov/articles/PMC...

Please let’s not keep repeating this abuse and introduce the much needed protocols in NHS care … there is a massive shortfall in duty of care here. This is UNACCEPTABLE #MyalgicEncephalomyelitis

@ashleydaltonmp.bsky.social how many more of us have to STARVE to death at the hands of the NHS before you DO SOMETHING?

The countdown is on and our final ‘10 birds’ guide is here... Spotting these on your patch? Now that’s lucky! 😍 Don't forget to sign up: www.rspb.org.uk/whats-happen... #BigGardenBirdwatch

From @meresearchuk.bsky.social The researchers using multimodal analysis to test blood from individuals with ME/CFS concluded that their study provides "compelling evidence" #MECFS is associated with concurrent dysfunction across multiple biological systems. Read more: tinyurl.com/2t9rc6jp #PwME

All members of the APPG on ME need to read this article from @abrokenbattery.bsky.social which clearly shows how much work needs to be done if there is to be any real, lasting change for #pwME medium.com/@abrokenbatt...

#januarty prompt today is #blue. This took a minute because there's so many I would like to share on this prompt. I finally chose this photo of the moon. It has flaws, but was one of my first attempts to ever capture the moon photographically.

I'm giving a talk next week and you're invited! ✨Improving Quality of Life in ME/CFS and Infection-Associated Chronic Conditions✨ The talk is donate-as-you're-able, and 20% will support #MEAction. You can sign up to attend here: us06web.zoom.us/meeting/regi...

Here's the link without the ":5037" portion of the URL (dunno why Science Direct is including this unusual port # in their URLs): www.sciencedirect.com/science/arti...

Delighted how @precisionlife.bsky.social and @actionforme.bsky.social et al used consented @decodemestudy.bsky.social data to -replicate #MEcfs genetic signal & -show its shared/distinct genetics with Long Covid. Next: replicate ME/CFS subtypes w/ targeted therapies www.medrxiv.org/content/10.6...

‘Feminist, Writer, Linguist. Wannabe diplomat with her Irish passport, a gift for Russian & a balanced interest in Israel/Palestine.’ #MEKills #PlanForME #JusticeForME #MaeveInquest

This brilliant video about the #GreatestMEdicalScandal has been out for a while but it’s worth reposting in case you haven’t seen it… If you don’t know much about #MEcfs or #LongCovid, or aren’t aware of the shocking treatment of people, please watch & help advocate for us! #JusticeForME #SevereME

‘Support for people living with ME is international & has deep roots, so we are not short on knowledge. Thanks to every one of you who has shared, promoted & donated. We would not be doing this without you, & thanks to you we continue to the next stage - under less pressure of time’

Germany pledges €500 million for research through the “National Decade Against Post-Infectious Diseases” (2026-2036), including #MECFS and #LongCOVID. Addressing what they call “one of the greatest public health challenges of the 21st century.” www.zeit.de/politik/deut...

An employer who doesn't know the absolute basics of how disability is defined in employment and discrimination law. Massive surprise... 🙄

At the #ICanCME2025 conference today! Sabrina Poirier & Maeghan Taverner's intros blew me away. ~Acknowledging labor from people with lived experience ~Setting out expectations ~Moment of silence for those we've lost This is what a conference designed by people with lived experience looks like 🧪

Sounds like they’re still focusing on the same model that hasn’t worked for many years for so many! Isn’t it unintelligence that does the same thing thinking it will produce a different outcome? Oh dear Perhaps get a disabled person to report on what being disabled is, unless this person is?!?