A Quiet Storm is an online art gallery showcasing the artwork of people who have lived with severe ME/CFS meglobalchronicle.wordpress.com/2026/06/04/a... #SevereME #SevereMECFS #MEcfs #PwME @nikosuvisto.com

“I’m ashamed to say that my very first reaction to that diagnosis was, oh my God, I don’t want her to have that because that was a label, a stigma that you are taught in medicine.” @binitakane.bsky.social speaking about her daughter’s diagnosis of #MECFS following Covid.

Yesterday was my mom’s name day, and a few relatives visited us. I stayed isolated, and my door was kept shut because too much noise makes my symptoms worse. But I did overhear a conversation about my situation. 1/10 #MECFS #pwME #Photography

From my ME/CFS photo project glass.photo/andrewgiffor... ALT: colour photo of white adult 40-something male, standing crooked in a blue bedroom with Ibuprofen gel smeared on his lower back #MECFS #LongCovid #pwME #ChronicIllness #DocumentaryPhotography

“We don’t know how to cure many conditions, but that doesn’t mean that this condition [ME/CFS] doesn’t exist… we don’t know how to treat probably 90% of neurological conditions.” Dr Tarek Gaber, interview at the #MECFS Clinic in Wigan (2024).

English subtitles have been added to the care clinic for people with severe ME and very severe ME in Norway. youtube.com/watch?v=-KX1...

I am so proud to be associated with those living with very severe #ME. You are the most courageous, determined and intelligent people ever. So few know anything about what you are facing, or how the UK State lines up to attack you through NHS 'standard operating procedures'. Update due justice4me.uk

#SevereMErgency #pwME, please sign this petition and email the hospital if you can. Instructions on the petition. @tessamunt.bsky.social - here we go again. @jamesmurrayldn.bsky.social @sharonhodgsonmp.bsky.social how many more times will you allow this to happen? We need safe beds for the Severe!

David Tuller about the Wired article by Alan Levinovitz. *Levinovitz calls for robust research into mind-body interventions. But he fails to mention two major clinical trials that pertain directly to his argument—a perplexing omission." virology.ws/2026/06/09/t...

3rd blue rose of the week. When will the world wake up? #pwME

Mihinköhän näyttöön tämä väite perustuu... Esim. syövän osalta vaatimukset positiivisesta ajattelusta on jo aikaa sitten todettu potilaille haitallisiksi. Liiallinen usko paranemiseen voi olla myös vaarallista. Tulee jatkuvia katkeria pettymyksiä eikä sopeudu siihen, että on kroonisesti sairas.

#SevereMErgency #ME/CFS #pwME I have just donated, can you help? @jamesmurrayldn.bsky.social how many more need to die before you will actually commission a suitable service for #SevereME and #VerySevereME? How sickening to abandon these very sick people to charity. @tessamunt.bsky.social fyi

Want to see another way World Cup politics affect everyday ppl (not just athletes being wrongfully detained)? Everywhere you look, rentals w/in 2 hours of Seattle have been jacked up to absurd prices. I’m disabled, homeless & living in a motel & they raised the room $900 MORE for June 😤 #help 🆘

Doctor with 2 children who have Long-Covid criticizes the Wired article and also started a petition. www.reddit.com/r/covidlongh... #LongCovid #LongCovidkids #kidswithME #pwme #millionsmissing

They have denied all my disability pension and sickness benefit applications. The appeals are denied as well. I’m deemed fully fit for work and made to collect unemployment "benefits". 1/2 nikosuvisto.com/denied-denie... #MECFS #pwME #Photography #Kela #SocialSecurity

From my ME/CFS photo project: glass.photo/andrewgiffor... ALT: colour photo of a chitting potato, looking like a tubby human, floundering on a windowsill surrounded by bottles and tablets #MECFS #Photography #CouchPotato #LongCovid #pwME

Wired @wired.com allowed a reporter who tweets that he thinks #LongCovid is usually psychogenic to write their new “Mind over matter!” Long Covid feature🙄 In reality, post-infectious illnesses like L.C. and #MyalgicEncephalomyelitis comprise what’s now the largest mass disabling event since polio.

Reminder that when people w/ ME or Long Covid express anger about the #GreatestMEdicalScandal of the 21st century, it’s because real people—mostly young women—are being abused by the medical system, abandoned by society, blamed for their suffering, & robbed of their lives. RIP Mirjam 💙🕯️

WHO Europe Director Dr. Hans Kluge said at this year’s Invest in ME conference: “ME is a severe multisystem physical disease!”. www.instagram.com/reel/DZKJrvs... #pwme #myalgicE #millionsmissing

After the awfully unscientific WIRED article on Long COVID feed your head with a great article on the late Barbara Ehrenreich who exposed the ‘Positive Thinking’ Industry

#pwME, never forget, you are always more than the illness. Even if it kills you, you are much more than it. Your are more than all the medical ignorance and social stigma you endure.

Post exertional malaise (PEM) is the hallmark symptom of #MECFS It’s not fatigue following activity. It is a dramatic deterioration and worsening of symptoms. Short video explainer - triggers, symptoms, and management. Repost for the last day of #MEAwarenessMonth

#MECFS is a “medical” and a “social catastrophe.” — Jörg Heydecke, founder of Germany’s ME/CFS Research Foundation. One patient waited 19 years for a diagnosis. Another said she was told her symptoms were psychological and that she needed to get on with it.

While doctors babble on about #ME/CFS as a "controversial" condition, those affected are thoroughly familiar with the (expansive & expanding) body of research on its pathophysiology. #LearnAboutME! @meckermutti.bsky.social

“Waking up, it’s like you’ve been hit by a truck. Everything’s shaking, vibrating internally. My brain feels inflamed, it’s like you’ve got a concussion.” Rhi has had #MEcfs for over 20 years.

“If there's disturbance in the vascular system, disturbance in the immune system, disturbance in the cell energy function, that would explain why people [with #ME/CFS] have hundreds of symptoms," "Because every tissue and organ in the body is impacted by this illness." www.cell.com/cell-reports...

#pwME there was a study in the past year or two showing the detrimental effects of psychologising physical illness. I can't find it anymore tho, does anybody have the link to the study?

Having #ME/CFS and being in #PEM, which actually happens to be triggered by the most simple and taken for granted activities of daily life, means that your day starts and ends in a matter of minutes. Your body is trapped in an invisible vise and the more you fight through it the worse you end up.

A friend of mine has become unable to work due to his Long Covid induced #ME/CFS. They'retrying to survive til he is able to get on disability. Please donate and share if you are able! 💙 www.gofundme.com/f/aid-for-a-...

Thanks to my mum for getting everything ready for our family #TeaPartyForME2026 on #BlueSunday2026 (on Sun) We’re doing it in aid of @irishmecfsassoc.bsky.social www.idonate.ie/fundraiser/B... but other worthy charities are available (see the-slow-lane.com/donation-pages ) #MEcfs #CFS #BlueSunday

Blue Sunday, the Tea Party for ME, is always the Sunday after #MEAwarenessDay & is a sweet way for healthy allies to support ppl with ME. You throw a little tea party (for friends or just yourself), donate the cost of a tea/pastry to an ME org of your choice, & post a pic online to raise awareness 💙

Sleep hygiene can be just as “damaging as graded exercise” for patients with #MECFS Dr Nigel Speight describes a girl with severe sleep reversal. She walked into hospital and was carried out a month later needing to be tube fed.

When are the repurposed drugs coming that will replace the psychobabble? I need them now! #ThereForME @theguardian.com @davetuller1.bsky.social #ME #Chronicillness #LC #PEM #POTS #LivesWeCannotLive #MissingMillions @meassociation.org.uk @longcovidsupport.bsky.social

It’s #WorldMEday: share as many of our stories possible while we’re still alive. Our community loses too many #pwME every day, yet we’re ignored by medical research funders &the public bc most of us are trapped in dark rooms 💔 linktr.ee/EthyricalArt... #MEawarenessDay #GlobalMEday #MillionsMissing

Tens of thousands of dollars of off-label meds & treatment experiments & I’m still mostly bedbound & too sick to work/socialize/do anything but exist & suffer for years on end. No research funding = no validated treatment = millions of young lives rotting away #MEAwarenessDay #GreatestMEdicalScandal

The full quote is that #pwME "feel effectively the same every day as an AIDS patient feels two months before death; the only difference is that the symptoms can go on for never-ending decades." Prof. Mark Loveless, Head of the AIDS and ME/CFS Clinic at Oregon Health Sciences University

TW: For anyone wanting to understand the kind of care people with severe ME/CFS receive, read Savannah’s story. www.gofundme.com/f/severemerg...

Today is #MEAwarenessDay ME/CFS is often described as neglected and under-researched. That ignores the true history. George Monbiot and Carol Monaghan have described it as one of the greatest medical scandals of the 21st century.

Loving reminder that #MyalgicEncephalomyelitis is one of the most disabling illnesses a human body can withstand and ANYONE can get it at anytime. This isn’t just our fight—it’s everyone’s. Per Stanford, M.E. is now one of the most common illnesses on the globe. Please step up❤️

‼️ BURIED ALIVE WITH M.E.‼️ For #MEAwarenessMonth I made a severe ME body‑bag “dance” film about death within the ME community. youtu.be/XhrAhGkrGuQ?... I also joined the online expo ME Kills by A Quiet Storm, which goes live on May 12th, 1/ #pwme #myalgicE #millionsmissing

For #MEAwarenessday I interviewed 8 men about their experience with ME. As far as I'm aware there's never been a film with just men talk about ME. Make sure to check out and please share!! #myalgicEman #pwme #millionsmissing #millionsmissing #severeME #MECFS youtube.com/watch?v=z_MC...

People with #severeME need protection from stimulation. Noise, light, scented beauty products, and even quiet talking can trigger post-exertional malaise, causing a flare up of symptoms and risking a relapse. Their room may need to be completely dark, scent free, and silent. #MEAwarenessWeek

Did you know May 12th is Florence Nightingale’s birthday & #MEawarenessDay? It’s not a coincidence: watch my vid &find out why… (I have #SevereME so this took a lot of energy to make, pls share🙏 I’m also homeless if you want to help!➡️ linktr.ee/EthyricalArt... ) #MEawareness #pwME #MillionsMissing

today is a bummer, hope those w/ this horrid disease will find some ease 💙

This photograph, titled ‘Suffocated’, was my submission to the A Quiet Storm’s online group exhibition ‘Myalgic Encephalomyelitis Kills’, which launched today on the International ME/CFS Awareness Day. 1/10 www.aquietstorm.me/myalgic-ence... #MECFS #Photography #OnlineExhibition

World M.E. Day - May 12, 2026 The #MillionsMissing from ME/CFS need better health care, up-to-date medical education and research funding now! I have suffered from ME/CFS since 2009. #StandByMEcfs #UnitedForME #StillSickStillFighting #pwME #EndMEcfs #MEcfs #myalgicencephalomyelitis #MEAction

On #WorldMEDay we send strength and courage to everyone living with #MECFS. We honour the memory of those we have lost and remain committed to transforming this tragedy into renewed determination to advocate for everyone living with this debilitating disease.

#Liegenddemo Leipzig - es war richtig voll! 💙❤️‍🩹✊

We show firm solidarity with the Anti-Psychosomatics Club! It's at the root of the harm for #pwME & #LongCovid Amazing to see the #liegenddemo images coming through. Our BPS 101 is nearly ready for pub! Enjoy a 🧵of protest 👇 bsky.app/profile/buec...