As the first edition sold out before even arriving from the printers (Totem in Poland) it’s really exciting to learn that the second edition in softcover has now arrived. Available via www.imageandreality.com

We #pwME have been bombarded with unregulated misinformation for decades. This is often intentional. There is scientific evidence but it doesn’t add up to a conclusive biomarker so the people who benefit from spreading the misinformation go unchecked 😡 Pic by Courtney Gensemer PhD

We're thrilled to release the #LongCovid Treatment Guide! This is a collaboration with @rthm.bsky.social to help patients & providers explore treatment options together. The guide focuses on 24 medications, but includes a few other interventions for breadth /1

The submissions for our open call online group exhibition, Myalgic Encephalomyelitis Kills, are now open on our website! More details on the website, and the original statement is linked down below. www.aquietstorm.me/open-call-me... #MECFS #pwME #OpenCall #Art

Periodic reminder that while #MyalgicEncephalomyelitis disproportionately impacts women, absolutely anyone can get it at anytime. Over 200 symptoms. Unremitting physical agony. Over 3.3 M just in the U.S. So far, no treatment or cure. This is EVERYONE’S fight:

What's up with the GPs in Australia? They keep promoting GET as if the PACE trial were actually not a fraudulent, discredited piece of crap! virology.ws/2026/03/09/t...

For every woman in the #ME & #LC community on #InternationalWomensDay Endless gratitude to every one of you for your courage, strength, compassion & resilience We're suffering due to widespread medical misogyny & our resistance will change how medicine treats women everywhere💙

I didn’t know it was #InternationalWomansDay #IWD today. All I want is a safe home where I can be healthy again. chuffed.org/project/1619... #MutualAid #DisabilityMutualAid 💸💕

👭 On #InternationalWomensDay we honour the women with Long Covid and ME and allies who keep pushing for truth, research, and care. ♀️Listen to women. Fund the science.

Throwback: packing b4 landlord sold the property (homeless since Sept & on the street at end of Mar if we don't find something asap...!) Ways to help us🆘 V: venmo.com/u/Donia-Lilly Art: donialilly.com eBay: ebay.com/usr/island_art PP: paypal.me/donialilly Gfm: gofund.me/283d83d9 #CatSky #Cat #HELP

#MyalgicEncephalomyelitis anniversary. A weird virus changed my life forever 20+yrs ago today. So many years lost. Then 18 yr later I got #Covid 1/5. Organ damage. I almost forgot. Expectations low but I can’t have basics. Thought I’d escape abuse & be safe by now. #PwME #MEAwarenessHour #MECFS

Clip: Dr @binitakane.bsky.social explains how ME is an energy-limiting illness. The hallmark symptom, Post-Exertional Malaise (PEM), means even normal activities can trigger a worsening of symptoms. Some of her patients have to choose between a shower or preparing a meal that day.

🆘 ONLY 25 DAYS UNTIL WE CAN NO LONGER STAY IN THIS MOTEL & I LOSE MY HOUSING VOUCHER AS WELL I’m disabled & we’ve been homeless 5+ months & the clock is ticking… Please share & if you know of any single-story rentals in this area, lmk: #PNW #Redmond #Kirkland #Sammamish #Eastside #SnohomishCounty

If there are flowers in our house, I try to use the opportunity to photograph them. The light in my room is a big problem, and I can’t stay upright for long without my symptoms worsening. So, any close-up or macro work is usually out of the question. #MECFS #Photography #Flowers

Just over a year ago, I left my 25 year NHS career to dedicate my life to a group of patients who remain largely unseen and unheard by the NHS - people with severe #LongCOVID and Myalgic Encephalomyelitis (#ME). 🧵 youtu.be/pk00btt7CVs?...

More on OMf's bold BioQuest Study 👉 1000 samples 👉 Wide omics approach 👉 Cohorts of ME, MS, Burnout, Long COVID, depression to filter out bio signals of fatigue 👉 Hope to produce 5-20 biomarkers to identify subsets 👉 Phase 1 of 3 Good article 👇

Today is Disability Day of Mourning 🕯️ Some great slides from @newdisabledsouth.org about this day: (featuring the @autisticadvocacy.org ) #disability #disabled #autistic #caregiver #ChronicIllness

Feeling very blue. After Twitter became X I lost all my audience there. I dedicated time to Instagram, built it back up to over 10k. Now I've been hacked, as a result ALL my following is gone, all my contacts, all my friends, no Threads, Facebook or Instagram. About 500k of views a week.

Every morning, my mother comes to my room and opens my curtains. I can’t do it myself as I’m 99% bedbound due to severe myalgic encephalomyelitis (ME/CFS). During the winter months, the rays of the morning sun reach my room from the other side of the house. #MECFS #pwME #Photography

Help break the stigma around #LongCOVID: share your story by writing an op-ed! To help demystify the process of writing and pitching, we hosted a free webinar with expert guests Torie Bosch, Funmi Okunola, and Madeline Miller. Watch now, or share with a writer friend! bit.ly/4s1qJxb

Next month, March is #LongCovidAwarenessMonth It’s also my birthday. Can I please get out of this hell? I can’t take much longer. Anybody got a spare room in #Australia? I’m #Melbourne but need somewhere safe. Info👇Please read. chuffed.org/project/1619... #MutualAid #MutualAidAustralia 💕💸

The amount of pressure from the right side of ME/CFS is really building in Norway right now. There’s a high-profile case regarding welfare for ME patients, New Guidelines in the work and a lot of people are rallying with what little energy they got. I smell CHANGE in the atmosphere!!

💌 Last FREEPOST before Long Covid Awareness Day You can get gifts, & advocacy boost tools like stickers, postcards, t-shirts 😎 🖇️ longcovidadvoc.shop

There's an update on Savannah's gfm. TW so much medical abuse. Please keep sharing and donating! By trying to find somewhere less unsafe, she has now lost her NHS provided carers. She's too unwell to do without, so needs to self fund them. Thank you 🙏🏻 #SaveSavannah #SevereMErgency #ME/CFS

Update: Feeling unsafe Savannah self-discharged & left QEH in a private ambulance. Even with the CEO of a national charity advocating in person, Guy’s refused to admit her. After waiting over two hours in the ambulance, she was forced to return to QEH. www.gofundme.com/f/severemerg...

#SaveSavannah #SevereMErgency #pwME please repost and boost the below. Nobody is willing to intervene. The health minister must step in and prevent a tragedy

@ashleydaltonmp.bsky.social Your words “these must become never events” PLEASE INTERVENE TO SAVE LIFE Savannah has not eaten for 9 weeks. There are no NHS services for severe ME - 7 months since publication of the Delivery Plan for ME/CFS www.meresearch.org.uk/claims-of-nh...

We have finally finished updating our online art gallery into a dark theme! A Quiet Storm showcases art made by people who have experienced severe ME/CFS. Our full statement is below. www.aquietstorm.me #MECFS #pwME #Art #OnlineArtGallery

Such an oddly familiar picture:

For some reason, I haven’t photographed the door of my room. Maybe it is because I’m always faced the other way around. 1/5 #Photography #MECFS #pwME

Many patients are told they have Functional Neurological Disorder (FND). This includes people with long COVID, ME/CFS, and many others. The core issue is that FND is built on flawed logic. When you break down the criteria, it often becomes a diagnosis of “we don’t understand.”

Jiatong Lu's chronic Lyme disease photos; jiatongzoelu.com/Nowhere-Land #ChronicLyme #LymeDisease #ChronicIllness #JiatongLu #Photography

Jiatong Lu - on Chronic Lyme, Disability Advocacy, & the Role of Art in Living with Illness It's basically the same shit show as ME and Long Covid. ME and LC orgs need to collaborate with other chronic disease orgs. Organise; strength, economic impact, unity. www.youtube.com/watch?v=9Xxz...

A lot of us probably have artifacts of a past self. Like the two pairs of shoes ($300 each, one nearly new) and other gear I wore to train for a half-marathon 3 years ago. This led to the #PEM crash that I still haven't recovered from. But I still have the shoes. #MECFS #disability #MillionsMissing

#smalltowninertia Huge thanks to @totem.com.pl @imageandreality Shipping preorders ASAP. Still available softcover of vol 2 & a very few hardcover vol 1 from @imageandreality www.imageandreality.co.uk

A few weeks ago, my friend came over to pick up my old weightlifting shoes so that he could try them out. I haven’t seen or worn the shoes in years. The last time I trained in them was on May 5th, 2018. 1/11 #Photography #MECFS #pwME

Seeing more and more people with ME being discharged from hospital - or just leaving appointments with consultants - with a diagnosis of FND on their records. Why is this happening? Is there a concerted effort by neurologists etc. to replace ME with FND? If so, who instigated it?

I’m Niko Suvisto, a Finnish photographer, and I’m 99% bedbound due to severe myalgic encephalomyelitis (ME/CFS). I’ve had ME for over a decade, and since 2022 I’ve spent my days confined to my bed 24/7. 1/4 #Photography #MECFS #pwME #SelfDocumentary

@tomkindlon.bsky.social @cjdrgg.bsky.social @atranscendedman.bsky.social @abrokenbattery.bsky.social @meassociation.org.uk @actionforme.bsky.social @meactionuk.bsky.social @meactionuk.bsky.social Please share far and wide! Desperately trying to #SaveSavannah

I despair of the dogmatism of the medical profession and the cruelty shown by so many members of the public. It's a terrible burden for patients whose bodies are already broken. 1/4

Please #pwME can you keep sharing. We need to #SaveSavannah, the NHS and UK government clearly won't.

Many thanks to Interpubliq for the great conversation, support & opportunity to share. ✌️🙏 interpubliq.com/small-town-i...

TW: Update on Savannah via GoFundMe: Donations have now funded legal action. Sonya Chowdhury (CEO Action for ME) has briefed a solicitor as well as Savannah’s MP. I’ve donated again. Also includes a diary style update of her experience in hospital. www.gofundme.com/f/severemerg...

Gisèle Pelicot: the shame must be carried by the abuser, not the abused. Hope her interview on iPlayer is seen far and wide; www.bbc.co.uk/iplayer/epis...

It’s Lunar New Year! 🎉🥳🐴 Help me escape daily #abuse from dark triad #Narcissist (psychiatrist diagnosed) #SignalBoost #MutualAid #HelpSky #FundSky #UrgentNeed #HelpFolksLive2026 #MutualAidAustralia #MutualAidMonday Basic need: safe house, friend to help. Paid. Negotiable. #Melbourne #Australia

Does anyone else have problems uploading videos to Bluesky via the app? I use iOS and I already reinstalled the app but it still doesn’t work. Tried yesterday and today. After selecting the video from my gallery and pressing upload it just shows nothing, just the view on this screenshot.

Update on Savannah’s case in The Times. She has severe ME/CFS, has lost 30kg and eaten nothing since January 18. Sonya Chowdhury, CEO of Action for ME, describes the situation as “appalling” and says she is very worried Savannah could die. archive.ph/J3Xv3

The Persistence of 'Small Town Inertia' wobnebmagazine.org/2026/02/12/t...

Update: We have decided to change the poem requirement to a maximum character count of 750 characters, including spaces. Our goal is to feature as many works as possible, and it’s easier to do so with shorter poetry. It’s also more accessible to the visitors. Sorry for the inconvenience!

There’s so much about editing I really enjoy! There’s so much about editing I really hate! But - It’s on the way.Your chance to join us right from the start of our #podcast adventure. Talking about: #Pacing #Spoons #ME/CFS #Energy #Productivity #Depression #Introductions #Plums