Please Buy & Share this book. #FrailAndFurious #MillionsMissing #ME #ME/CFS @MEaction

“What Is Myalgic Encephalomyelitis Like? Patient & Caregiver Perspectives” shares 80 firsthand accounts from people living with and caring for those with ME worldwide. BHC was honored to write the book foreword and chapter forewords for this important project by WIMEL writers. Available on Amazon.

After multiple misdiagnosises, hospitalisations and a surgical intervention later deemed unnecessary, Ms Engel met GP and researcher Richard Schloeffel, who diagnosed her with a very severe form of myalgic encephalomyelitis (aka #ME/CFS). This tragic situation is the same 🌎🌍🌏wide and must end!

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

Today is #MEAwarenessDay and while I spend every day painfully aware of the limitations this disease imposes on me, perhaps you haven't thought about it. Today is a great day to learn. Anyone can be affected by ME, and I'm one of those #MillionsMissing.

Waiting for my copy, hoping it comes today for World ME Day!! #FrailAndFurious #MillionsMissing #ME #ME/CFS @MEaction

Crikey!

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.

The Star: "Meadowhall Shopping Centre in Sheffield will illuminate its roof lighting in blue in recognition of International ME Awareness Day on May 12, helping shine a light on the realities of living with Myalgic Encephalomyelitis (ME)." https://tinyurl.com/3wh4m5te #MECFS

It’s ME awareness day and I’m ironically not well enough to post anything helpful about it because I feel too shit. Don’t get ME or Long Covid, it sucks.

#MECFS is a disabling condition impacting at least 67 million, but medical education is lacking & patients are denied the care they deserve. Ask healthcare professionals to read our 1-page doc on how our Medical Education Hub can help. https://ow.ly/gFnB50YXU4J#MECFS#EducateME

For most of us, #MyalgicEncephalomyelitis is a life sentence. No appeal. No parole. No automatic release. It’s cruel, relentless, and gradually strips away the life you once had, reducing it piece by piece until all that remains is you and four walls. A prison without bars. #MEAwarenessDay #MECFS

A visit, some gardening, and another outing yesterday have left me exhausted #longcovid

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 💙🤍💜

If you think quarantine traumatized you. Try having a chronic illness or disability that keeps you inside for 90% or more of your life. It's not easy.

I have an #illness more #common than type 1 diabetes and more #devastating to my quality of life than cancer, yet no one has ever heard of #MyalgicEncephalomyeliti. #MEAwarenessDay #MillionsMissing #MECFS #chronicillness #spoonie #severeME

#MEAwarenessDay #pwME If healthy people understand what it took to survive alone, in the dark, in an utterly broken body they would not question our strength. They would only ask how we endure.

#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.

It’s 12 May, #MEcfs Awareness Day today. Probably appropriate that I didn’t get out today as I’d hoped. So here’s me on the couch.

Celebrating #MEAwarenessDay by feeling crap. Solidarity to everyone else out there somehow getting through their day / week / month / year with meandering nausea, pain, fatigue, etc etc etc

It's #WorldMEday I woke up crashed and in an utterly foul mood. Seems appropriate. I wish us all a rapid acceleration of the change in attitudes we're seeing in recent years I wish us a UK govt that owns up to its role in this scandal, tries to make amends and starts funding care for #SevereME

May 12 marks the International Awareness Day for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), a disease that causes overwhelming fatigue and prevents people from taking part in ordinary activities. To participate in this day, take the time to look […] [Original post on toot.wales]

Today (May 12th) is #MEAwarenessDay. I've been posting about the #MillionsMissing from their lives for over 10 years now (despite not being affected myself). Few realise that #MEKills and there is a #SevereMErgency ongoing. I took this picture (below) in May 2016.

🆕 New study to seek out microbial triggers of ME/CFS Our researchers are launching a new study funded by @investinmeresearch.bsky.social into the links between Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and infectious microbes. buff.ly/3LONWa9

It took 7 years but we have managed to publish an article in the physiotherapy frontline magazine "Do no harm". Thank you to the @thecsp for publishing. Over 65,000 UK physios will see this important message about #pwme @physiosforme.bsky.social

Today is #WorldMEDay, 12 May 2026 Wales 19,122 UK 491,291 World 50 million+ #EducateME #MyalgicE #MEAwareness #GlobalVoiceForME

Today (12th May) is ME Awareness Day.  ME (Myalgic Encephalomyelitis) also known as CFS (Chronic Fatigue Syndrome) is a complex, multi-system disease involving the brain, muscle, immune and neuroendocrine (hormone) systems.  1/7 #pwME #MECFS #MEAwarenessDay

💙💛 Today on ME Awareness Day, Dunfermline Advocacy is sharing to raise awareness, promote understanding, and support those living with ME. #MEAwarenessDay #CitizenAdvocacy #DunfermlineAdvocacy #MEAwareness #SupportAndUnderstanding

🚨 Major funding secured for Sequence ME & Long Covid, a DecodeME project. On #WorldMEDay, we’re thrilled to share that the study has received £4.75 million from the UK government, signalling a transformative step towards uncovering the biological roots of ME/CFS and Long Covid.

We’ve seen a lot of pictures like this today! We hope everyone who has received their copy is as happy as this.

#MEAction met with four Congressional Offices today alongside #NotJustFatigue to discuss funding the ME/CFS Research Roadmap via appropriations. We still have 8 more meetings with Congressional Members to go! #MillionsMissing #pwME #MECFS #LongCovid

Finally holding a copy of our book; the fruit of so much effort. Fitting somehow that it has been delivered on a day I'm unable to make it out of bed, having expended a lot of energy (happily) yesterday. Please buy and share! @pillowwriters.bsky.social Day 11 of #MEAwarenessMonth #MECFS #MedSky

“Imagine you must operate on 15% energy, at your best. If you go into the red it can take days, weeks or months to recover, and only to 15%.” Úna, Ireland, living with myalgic encephalomyelitis since 1982

This week (11th-16th May) is ME Awareness Week, a chance to raise awareness of the debilitating, multi-system condition Myalgic Encephalomyelitis (encephalopathy) also known to as Chronic Fatigue Syndrome (CFS).  #MEAW2026 #MEAW #MEAwarenessWeek

Today marks the start of #MEAwarenessWeek (11-17 May). More people are aware of #MECFS but work is still needed to counter misinformation and share medical information. Here are 6 myths and facts everyone should know about #MyalgicEncephalomyelitis. worldmealliance.org/2025/04/worl...

Decoding #ME/CFS @decodemestudy.bsky.social Professor Chris Ponting on the study bringing new clarity to ME/CFS research. For many people living with myalgic encephalomyelitis (ME/CFS), the search for answers why they’re so unwell has been long and often frustrating. Scientific understanding

This week’s free zoom meetings. Monday 11th May The Annex for long form writers 11:00am PST Thursday 14th May Early Pillows The Map 2:00 pm GMT Standard Pillows for all forms of writing 11:00am PST Friday 15th May Pillow Crafters for people who like to create arts and crafts 11:00am PST

Huge congratulations to our WIMEL group on the publication of their incredible book. What is Myalgic Encephalomyelitis Like? Patient & Caregiver Perspectives The book is now available to purchase via Amazon.

In time for #MEAwarenessDay our book has been published. #MECFS kills and ruins lives. It's imperative that it is researched and treated. Understanding its complexities is key - let's spread that information. Please buy a copy, read and donate to your doctor. NB #MedSky amzn.eu/d/01FVLQJm

A snippet from our upcoming book. Sharing the stories of those living with myalgic encephalomyelitis.

Coming soon... Our book was written in community sharing our experiences of living with myalgic encephalomyelitis

Thursday 9th April Early Pillows Optional Prompt: Transcending Lifetimes 2:00 pm GMT Thursday 9th April Standard Pillows for all forms of writing 11:00am PST. Friday 10th. Pillows Write Now. Instant writing 11:00am PST Sunday 12th WIMEL Social Media Briefing.11:00am PST.

1/2: Southend Vox are a community choir based in Southend-on-Sea. Annually their members select a charity to support throughout the year with various fundraising events. This year they chose the ME Association! Thank you to Southend Vox for supporting us! #MECFS #pwME #SouthendOnSea

Members of the Pillow Writers are speaking at 8:00pm on Wednesday 8th Symposium for Disability and Accessibility at Yale. Tickets are free dandasymposium.yale.edu/events/2026-...

Sometimes, even after all these years, I misjudge the day and it becomes impossible to get ready for the night ahead. On the plus side, tomorrow is Thursday, Early Pillows followed by Standard Pillows . Hope to see you there. 🩵

Sunday 12th April 11:00am PST WIMEL Social Media Briefing. Half of writing a book is marketing it. Please join us on Zoom to discuss what you can do to help promote the WIMEL book What is Myalgic Encephalitis Like. #ME/CFS

𝙒𝙝𝙖𝙩 𝙞𝙨 𝙈𝙮𝙖𝙡𝙜𝙞𝙘 𝙀𝙣𝙘𝙚𝙥𝙝𝙖𝙡𝙤𝙢𝙮𝙚𝙡𝙞𝙩𝙞𝙨 𝙇𝙞𝙠𝙚? This book is a must-read for medical professionals, students, policy-makers, researchers, caregivers, and all affected by myalgic encephalomyelitis (ME). WIMEL — a Pillow Writers group

Our latest News in Brief summary has headlines and links to further reading about ME/CFS, Long Covid, and related news for the week of Mar. 23-29: Topics: News, advocacy, articles Coming events Research news and commentary Published research www.s4me.info/threads/news... #MEcfs #LongCovid

This week: Monday 30th March The Annex for long form writers 11:00am PST. Thursday 2nd April . Early Pillows ‘Pyjama Party’2:00pm GMT. Thursday 2nd April Standard Pillows for all forms of writing 11:00am PST. Friday 3rd April Pillow Crafters for people who like to create arts and crafts 11:00am PST.

A chocolate shop in Southport Lancs has created a limited-edition red leaf chocolate to raise awareness of ME and money for Prof Ponting's research. The red leaf is a symbol of hope for Joe Greer, whose daughter has severe ME tinyurl.com/22u24zr2