Pillow Writers
@pillowwriters.bsky.social
Pillow Writers is a free international online writing group for the ME/CFS community. All welcome.
Special Edition: Coffee w/ a Clinician: @batemanhornecenter.bsky.social @meactnet.bsky.social @openmedf.bsky.social @solveme.bsky.social and @pillowwriters.bsky.social discuss severe ME/CFS, lived experience, clinician education, research, & advocacy. 8/12, 10 am MDT givebutter.com/Coffeewithcl...
August 12th "Coffee" with a Clinician
Special Edition: "Coffee" with a Clinician in Recognition of Severe ME/CFS Awareness Month
givebutter.com
July is Disability Pride Month! Whether you’re a disabled journalist yourself or are able-bodied and wish to report on disability issues accurately, ethically, and respectfully, here are a few disability reporting tips based on our training last year with @thesicktimes.org & @newdisabledsouth.org.
Save the date- August 12th at 12 pm EDT! Our friends at Bateman Horne Center have invited Open Medicine Foundation (OMF), Solve M.E., #MEAction Network, & WIMEL writers to join their "Coffee with a Clinician" time in honor of Severe ME Awareness Month. Register here: https://ow.ly/kRU650ZnW7S
Please Buy & Share this book. #FrailAndFurious #MillionsMissing #ME #ME/CFS @MEaction
Pillow Writers@pillowwriters.bsky.social · 3mo agoThis is a book designed to explain to policy makers, healthcare professionals and friends and family what life with Myalgic Encephalitis is actually like. Buy it, share it and help us promote it to a wider audience wimel2.wordpress.com
“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.
Pillow Writers@pillowwriters.bsky.social · 3mo ago“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
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!
Extreme fatigue illness linked with changes to immune cells: study
Ella Engel saw many specialists before she was diagnosed with myalgic encephalomyelitis/chronic fatigue syndrome. Her blood may help researchers understand the condition.
abc.net.au
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
Pillow Writers@pillowwriters.bsky.social · 3mo agoWe’ve seen a lot of pictures like this today! We hope everyone who has received their copy is as happy as this.
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
Meadowhall to Light Up Blue for International ME Awareness Day
“We are deeply grateful to Meadowhall for standing alongside our community”
tinyurl.com
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 #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
New study to seek out microbial triggers of ME/CFS - Quadram Institute
ME/CFS is a complex, long-term illness characterised by severe fatigue, along with other symptoms like sleep disturbances, brain fog, flu-like feelings and sensory sensitivities. It affects around…
quadram.ac.uk
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
Physios For ME@physiosforme.bsky.social · 3mo agoThis #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...
Today is #WorldMEDay, 12 May 2026 Wales 19,122 UK 491,291 World 50 million+ #EducateME #MyalgicE #MEAwareness #GlobalVoiceForME
