Sign in

Pillow Writers

@pillowwriters.bsky.social
675 followers 710 following 286 posts

Pillow Writers is a free international online writing group for the ME/CFS community. All welcome.

PostsRepliesMedia
Reposted by Pillow Writers
ME/CFS San Diego @mecfssd.bsky.social · 25/08/2026
Environmental exposures may play a role in chronic illness in ways we don’t yet understand. Here’s a guide to recognizing ME/CFS and Long COVID in children and adults, including how ME/CFS can present differently in children. www.reddit.com/r/mecfsSD/co...
reddit.com
From the mecfsSD community on Reddit
Explore this post and more from the mecfsSD community
043
Pillow Writers @pillowwriters.bsky.social · 23/08/2026
MEAction is excited to announce our Severe ME Artists Project 2026 share.google/jE7DYE7x9Xe5...
share.google
Severe ME Artists Project 2026
#MEAction is excited to present this year's Severe ME Artists project in recognition of Severe ME Awareness Day!
170
Pillow Writers @pillowwriters.bsky.social · 22/08/2026
thesicktimes.org/2026/08/21/h...
thesicktimes.org
“Hope to outlast the storm”: How severe ME impacts two brothers - The Sick Times
Essays documenting the toll that myalgic encephalomyelitis (ME) has taken on one family, from the new book, 'What Is Myalgic Encephalomyelitis Like?'
000
Pillow Writers @pillowwriters.bsky.social · 21/08/2026
youtu.be/HlfbfyRl3K8 The Coffee with a Clinician event, focussing on severe ME. The event was hosted by the Bateman Horne Center with partners - #MEAction, The Open Medicine Foundation, Solve ME and the WIMEL Writers.
youtu.be
Special Edition: "Coffee" with a Clinician in recognition of Severe ME/CFS Awareness Month
YouTube video by Bateman Horne Center
011
Reposted by Pillow Writers
ME/CFS San Diego @mecfssd.bsky.social · 18/08/2026
Severe ME @pillowwriters.bsky.social Monthly Zoom: a quiet, gentle 30-minute meeting to connect w/ others with severe ME. Join for as much or as little of the meeting as you’re able. pillowwriters.wordpress.com/2026/05/08/s...
pillowwriters.wordpress.com
Softest Pillows
We are missing some of our friends with Severe ME and would like to set aside a few minutes once a month to just say a very soft, very quiet, very slow but cheery “Hello!” We will try to …
033
Pillow Writers @pillowwriters.bsky.social · 14/08/2026
www.giveacar.co.uk/listing/me-a...
giveacar.co.uk
Donate your Car to ME Association | Give a Car
Donate your car to ME Association. Quick, free & anywhere in the UK. The original not-for-profit car donation service.
000
Reposted by Pillow Writers
#MEAction Scotland @meactionscotland.bsky.social · 21/06/2026
Published in March this year, 'What is Myalgic Encephalomyelitis Like?' is a co-production between the WIMEL writers group (part of @pillowwriters.bsky.social) and the @batemanhornecenter.bsky.social
Blue, white and gold abstract art overlaid by three navy blue boxes containing white text. The text in the top box reads 'What is Myalgic Encephalomyelitis Like? Patient and Caregiver Perspectives'. Text in the second box reads 'Created by WIMEL writers. Foreward and Other Contributions by Bateman Horne Center.' Text in the third (bottom) box reads 'For medical professionals, policy-makers and all affected by myalgic encephalomyelitis' The WIMEL writers logo - an empty battery symbol, resting on a pillow - follows this text.
143
Reposted by Pillow Writers
betsy ladyzhets 😷 @betsyladyzhets.bsky.social · 08/08/2026
Today @thesicktimes.org: In recognition of Severe ME Awareness Day, we republished excerpts from the new book What Is ME Like? focusing on Severe ME. Many thanks to the WIMEL team for allowing us to share their powerful work 🙏🏻 thesicktimes.org/2026/08/08/t...
thesicktimes.org
“This exhaustion is cellular”: Excerpts from the new book ‘What Is Myalgic Encephalomyelitis Like?’ - The Sick Times
Essays focusing on Severe Myalgic Encephalomyelitis (ME), from a new book by an international group of writers documenting their ME experiences.
17130
Reposted by Pillow Writers
#MEAction Network @meactnet.bsky.social · 10/08/2026
Join the #UnitedForME collaborative (Bateman Horne Center, #MEAction Network, Open Medicine Foundation (OMF), Solve M.E.) with WIMEL guests for a special "Coffee" with a Clinician in honor of Severe ME Awareness Month on Aug 12 at 12 pm ET. Register: ow.ly/eV4u50ZwhXA #SevereME
Portraits of six speakers featured in a 'Coffee with a Clinician' event for Severe ME/CFS Awareness Month. Pictured from left to right 1st row: Amy Mooney (Bateman Horne) , Laurie Jones (MEAction), Danielle Meadows (Open Medicine Foundation) 2nd row: Emily Taylor (Solve M.E.) , Stoo Brown (WIMEL), and Clayton Powers (moderator)
Text at top: "Coffee" with a clinician in recognition of Severe ME/CFS Awareness Month
084
Reposted by Pillow Writers
Solve M.E. @solveme.bsky.social · 10/08/2026
Join Solve's Emily Taylor & reps from Bateman Horne Center, #MEAction Network, Open Medicine Foundation (OMF) & the WIMEL Writers for "Coffee with a Clinician" in recognition of #SevereMEAwareness Month. Wed. Aug. 12  |  @9:00 am PT / 12 pm ET. Register: ow.ly/j1AR50ZvWcK #UnitedForME
Portraits of six healthcare and research professionals, including Solve M.E. President and CEO Emily Taylor, are featured in an ad for a Severe ME/CFS Awareness Month event titled 'Coffee with a Clinician'.
034
Pillow Writers @pillowwriters.bsky.social · 08/08/2026
We are delighted to have been featured in this article by The Sick Times. thesicktimes.org/2026/08/08/t...
thesicktimes.org
“This exhaustion is cellular”: Excerpts from the new book ‘What Is Myalgic Encephalomyelitis Like?’ - The Sick Times
Essays focusing on Severe Myalgic Encephalomyelitis (ME), from a new book by an international group of writers documenting their ME experiences.
0112
Reposted by Pillow Writers
ME/CFS San Diego @mecfssd.bsky.social · 03/08/2026
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...
givebutter.com
August 12th "Coffee" with a Clinician
Special Edition: "Coffee" with a Clinician in Recognition of Severe ME/CFS Awareness Month
041
Reposted by Pillow Writers
Press On @pressonsouth.bsky.social · 24/07/2026
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.
0219
Reposted by Pillow Writers
#MEAction Network @meactnet.bsky.social · 15/07/2026
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: ow.ly/kRU650ZnW7S
Save the date for Coffee with a Clinician on August 12, recognizing Severe ME Awareness Month. Simple graphic with the date August 12th circled. Text: Save the date! Coming soon. "coffee" with a clinician in recognition of Severe ME Awareness Month. Logos for Bateman Horne center, MEAction, Open Medicine Foundation, and Solve M.E, are at the bottom.
074
Reposted by Pillow Writers
Bateman Horne Center @batemanhornecenter.bsky.social · 08/07/2026
"Coffee" with a Clinician is live www.youtube.com/watch?v=xmKv...
youtube.com
"Coffee" with a Clinician: Chapter 5 - Sleep Challenges
YouTube video by Bateman Horne Center
021
Reposted by Pillow Writers
Lisa Geiszler @melovewarrior.bsky.social · 12/05/2026
Please Buy & Share this book. #FrailAndFurious #MillionsMissing #ME #ME/CFS @MEaction
0216
Reposted by Pillow Writers
Bateman Horne Center @batemanhornecenter.bsky.social · 12/05/2026
“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.
13718
Reposted by Pillow Writers
valebodi.bsky.social @valebodi.bsky.social · 09/05/2026
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!
abc.net.au
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.
1198
Reposted by Pillow Writers
Dis 🏳️‍⚧️ @disislost.bsky.social · 12/05/2026
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
44634
Reposted by Pillow Writers
e. hashman @eha.sh · 12/05/2026
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.
14217
Reposted by Pillow Writers
Lisa Geiszler @melovewarrior.bsky.social · 12/05/2026
Waiting for my copy, hoping it comes today for World ME Day!! #FrailAndFurious #MillionsMissing #ME #ME/CFS @MEaction
083
Pillow Writers @pillowwriters.bsky.social · 12/05/2026
Crikey!
193
Reposted by Pillow Writers
James L. Sutter @jameslsutter.bsky.social · 12/05/2026
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.
4247107
Reposted by Pillow Writers
ME Association @meassociation.org.uk · 12/05/2026
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)." tinyurl.com/3wh4m5te #MECFS
tinyurl.com
Meadowhall to Light Up Blue for International ME Awareness Day
“We are deeply grateful to Meadowhall for standing alongside our community”
0127
Reposted by Pillow Writers
Penncat @pennicat.bsky.social · 12/05/2026
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.
White nonbinary person lying in bed looking rubbish.
5306
Reposted by Pillow Writers
Solve M.E. @solveme.bsky.social · 12/05/2026
#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. ow.ly/gFnB50YXU4J #EducateME
01910
Reposted by Pillow Writers
Julie Houston @julesahouston.bsky.social · 12/05/2026
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 dimly lit modern bedroom seen through black prison bars. A woman in pyjamas grips the bars with both hands while standing beside an unmade bed. On the bedside table are several medication bottles beside a softly glowing lamp.
3229
Reposted by Pillow Writers
Too Long Covid 💚 @toolongcovid.bsky.social · 12/05/2026
A visit, some gardening, and another outing yesterday have left me exhausted #longcovid
2122
Reposted by Pillow Writers
Merrydholl @maryeilmicdom.bsky.social · 12/05/2026
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 💙🤍💜
43312
Reposted by Pillow Writers
Chronic Illness Humor @chronicillness.bsky.social · 12/05/2026
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.
314526
Reposted by Pillow Writers
Alex @alex-wears-crocs.bsky.social · 12/05/2026
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
2123
Reposted by Pillow Writers
Gretch @gvnett.bsky.social · 12/05/2026
#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.
34014
Pillow Writers @pillowwriters.bsky.social · 12/05/2026
#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.
93510
Reposted by Pillow Writers
Campbell J. Brice ✝️ 🌻 • 🍐 🇺🇦 @incessantbarking.bsky.social · 12/05/2026
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.
A selfie of me, a white man with somewhat messy hair, seated on a couch indoors.
182
Reposted by Pillow Writers
Clare Bonetree @blooyonder.bsky.social · 12/05/2026
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
1122
Reposted by Pillow Writers
Michiel @murtoz.bsky.social · 12/05/2026
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
53411
Reposted by Pillow Writers
AVOW Wrexham @avow.toot.wales.ap.brid.gy · 12/05/2026
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]
163
Reposted by Pillow Writers
Lucibee @lucibee.bsky.social · 12/05/2026
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.
Close-up photo of a cluster of three light-blue forget-me-not flowers against a blurred green background, with the hashtag #MillionsMissing below. 

Lucibee took this photo in May 2016.
5247
Reposted by Pillow Writers
Quadram Institute @quadraminstitute.bsky.social · 12/05/2026
🆕 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
quadram.ac.uk
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…
0149
Reposted by Pillow Writers
Dr Nicola Clague-Baker @claguenjc36.bsky.social · 12/05/2026
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
23716
Reposted by Pillow Writers
wamesmecfs.bsky.social @wamesmecfs.bsky.social · 12/05/2026
Today is #WorldMEDay, 12 May 2026 Wales 19,122 UK 491,291 World 50 million+ #EducateME #MyalgicE #MEAwareness #GlobalVoiceForME
075
Reposted by Pillow Writers
ME Association @meassociation.org.uk · 12/05/2026
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
IMAGE DESCRIPTION: A black and white collage of various photos of people, ranging in age, gender, and ethnicity. Some of the people are lying in bed, some with eye masks over their eyes, whilst others are sat or lying on sofas, and others are in wheelchairs or using other mobility aids. 
ME Association awareness logo with ME/CFS awareness ribbon.
12213
Reposted by Pillow Writers
Dunfermline Advocacy @da-westfife.bsky.social · 12/05/2026
💙💛 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
054
Reposted by Pillow Writers
Action for ME @actionforme.bsky.social · 12/05/2026
🚨 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.
23419
Pillow Writers @pillowwriters.bsky.social · 11/05/2026
We’ve seen a lot of pictures like this today! We hope everyone who has received their copy is as happy as this.
2206
Reposted by Pillow Writers
#MEAction Network @meactnet.bsky.social · 11/05/2026
#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
1309
Reposted by Pillow Writers
Merrydholl @maryeilmicdom.bsky.social · 11/05/2026
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
A woman holding a book: What is Myalgic Encephalomyelitis Like? Patient and Caregiver Perspectives.
44620
Pillow Writers @pillowwriters.bsky.social · 11/05/2026
“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
05523
Reposted by Pillow Writers
ME Association @meassociation.org.uk · 11/05/2026
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
IMAGE DESCRIPTION: Photo of a person lying in bed with an eye mask over their eyes. 
Wording reads: This week is ME Awareness Week. 11th-16th May 2026. 
MEA awareness logo and ribbon.
2169
Reposted by Pillow Writers
Dan Wyke @danwyke.bsky.social · 11/05/2026
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...
worldmealliance.org
World ME Day 2025: Six Myths and Facts Everyone Should Know About Myalgic Encephalomyelitis (ME)  - World ME Alliance
Myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome (CFS), is a debilitating illness that affects millions of people worldwide. However, persistent myths and misunderstandings hinde...
04226