iiinova — where your digital self keeps evolving

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ME Advocates Ireland (MEAI) @meadvocatesireland.bsky.social · 23/09/2026

Many will remember Karina Hansen a Danish woman w severe ME who in 2013 was forcibly removed from her family home & taken to Hammel Neurocenter, treated as a de facto psychiatric patient. Her family, friends & international ME community fought for years for her return home Details re new film 👇

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Anil van der Zee @anilvanderzee.bsky.social · 18/09/2026

Teenagers and siblings Anna and Moritz have very severe ME. They lie in darkened rooms only meters apart, yet they have not seen each other for almost a year. Watch this short heart wrenching segment from a documentary about ME. youtu.be/NgBPfuMtA6s?... #pwme #severeME

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Jamie Crawford @jamiecrawford68.bsky.social · 08/08/2026

Unless it’s someone you know personally, you won’t meet anyone with severe ME. They’re typically bedbound, and live in constant, well, discomfort doesn’t come close to it. See below. The govt, and by extension NHS, do nothing. It’s a living hell. #severeMEday #severeMECFS

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EndMalnutritioninME @malnutritionme.bsky.social · 08/08/2026

The 25% ME Group and Action for ME @actionforme.bsky.social have released a report on severe ME drawing on the experience of people with #ME, their carers, and professionals. 25megroup.org/wp-content/u... #SevereMEDay

25megroup.org

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Adam @abrokenbattery.bsky.social · 08/08/2026

Content warning Today is #SevereMEDay the birthday of Sophia Mirza. Sophia was wrongfully sectioned for refusing to attend a clinic that treated patients with Graded Exercise Therapy. The mistreatment during her stay resulted in a dramatic deterioration and she later died.

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Adam @abrokenbattery.bsky.social · 04/07/2026

“He was a doctor who ran marathons. Now, walking to the bathroom is harder than any marathon he ever ran. In this grade of severity ME is only invisible if people purposefully look away.” Evelien van den Brink calling for biomedical #MECFS research in European Parliament in 2019.

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Adam @abrokenbattery.bsky.social · 19/06/2026

“Only 10.8% of people with severe or very severe ME feel supported by the NHS.” Baroness Walmsley, during a House of Lords debate also mentions a patient being offered a multivitamin and talking therapy despite being unable to tolerate sound.

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Adam @abrokenbattery.bsky.social · 18/06/2026

“These [Prevention of Future Deaths] reports make it clear that it’s not just a question of future improvement but a question of patient safety now. More deaths from ME must be prevented.” Baroness Scott of Needham opening the House of Lords debate on Severe #MECFS

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Adam @abrokenbattery.bsky.social · 19/05/2026

“They sometimes aren’t supported by their families. They almost always aren’t supported any longer by their friends.” Caroline Kingdon, on the profound isolation experienced by people with severe #MECFS.

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Adam @abrokenbattery.bsky.social · 26/05/2026

“They’re in a darkened room, they can’t tolerate light or sound… some are even tube fed. They’re so unwell, you almost can’t fathom it” Former Team GB rower @oonagh_cousins on people with very severe #MECFS and #LongCovid and the importance to advocate for those who can’t.

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Adam @abrokenbattery.bsky.social · 28/05/2026

“This is not a life, it is miserable. So how do I feel? Not even human anymore.” A 36-year-old woman with severe #MECFS confined to bed, on oxygen and a feeding tube, unable to tolerate light, sound or vibrations. Clip from Swiss TV

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ThereForME @thereforme.bsky.social · 24/05/2026

“Very severe ME is quite a unique condition in that there is effectively no NHS specialist services that are available for someone in James’ position.” Our co-founder @karenlhargrave.bsky.social speaks to @theipaper.com about the financial cost of supporting a loved one with very severe ME.

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EndMalnutritioninME @malnutritionme.bsky.social · 13/05/2026

Lots of information on how to prevent life-threatening #malnutrition in patients with #severeME in this presentation by Helen Baxter. #MEAwarenessWeek #EndMalnutritionInME @patientsafetylearning.org @patientsafetywatch.bsky.social www.youtube.com/watch?v=FRx7...

youtube.com

Helen Baxter V2

YouTube video by Malnutrition Task Force

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EndMalnutritioninME @malnutritionme.bsky.social · 12/05/2026

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

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Niko Suvisto @nikosuvisto.com · 12/05/2026

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

A grainy black-and-white photograph of a fist holding a white rose against a black background.

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EndMalnutritioninME @malnutritionme.bsky.social · 11/05/2026

People with #ME need protection from overexertion. Any activity can trigger post-exertional malaise which can cause a flare up of symptoms and possibly a relapse or crash. Too much exertion can cause a permanent worsening of the disease. #MEAwarenessWeek

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Adam @abrokenbattery.bsky.social · 10/05/2026

Update on Savannah: Cyclizine was restored 2 weeks after arriving in Devon, which immediately enabled her to start eating again. After nearly 3 months of “relentless agony and begging”, oxycodone injections were also restored to a level that controls her pain.

gofundme.com

Donate to #SevereMErgency:Save Savannah from dying inside NHS hospital, organized by Sam Pearce

Very Severe ME patient 23 year-old Savannah Victora-May is at … Sam Pearce needs your support for #SevereMErgency:Save Savannah from dying inside NHS hospital

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Adam @abrokenbattery.bsky.social · 09/05/2026

“So what you’re really telling us is that everything we’ve been taught in our training as nurses is wrong for this condition.” Dr Nigel Speight describing a nurse’s reaction after he explained how to care for a patient with severe #MECFS.

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Adam @abrokenbattery.bsky.social · 02/05/2026

“You mourn yourself while still alive. And others move on as if you’ve already died.” Buried Alive with M.E. — a new film by Anil van der Zee (13 mins) Extraordinary work from someone who is so severely affected by #MECFS

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Anil van der Zee @anilvanderzee.bsky.social · 12/04/2026

TRAILER: Buried Alive with M.E. I’ve spent the last months making a film for M.E. Kills, an online exhibition by A Quiet Storm. People with ME die every week. Many more are left to rot in dark rooms without care, disbelieved and dismissed. It’s a living death. #pwme #millionsmissing #severeME 1/

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Adam @abrokenbattery.bsky.social · 29/03/2026

Really good explanation of Post-Exertional Malaise (PEM), the hallmark symptom of ME/CFS, and why pacing activities is so important. Clip from German TV science program.

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Adam @abrokenbattery.bsky.social · 24/03/2026

Tomos is bedbound with Severe #MECFS. His mother says at his worst he looked as if he was “paralysed”, “a dead weight”, unable to open his eyes, talk or move. Clip from BBC Wales Today.

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Tom Kindlon @tomkindlon.bsky.social · 20/02/2026

🧵 Hospital Care Plan for Severe-Very Severe ME/CFS and long COVID (and associated conditions, e.g.: dysautonomia) anzmes.org.nz/wp-content/u... Would be great if hospital staff took these recommendations on board. #MEcfs #LongCovid #SevereME #VerySevereME #CFS #PwME #MyalgicEncephalomyelitis 1/

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Adam @abrokenbattery.bsky.social · 16/02/2026

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

Screenshot of the article from the Times

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Adam @abrokenbattery.bsky.social · 05/02/2026

Tessa Munt MP highlighted Savannah’s case in Parliament. She said the Government’s ME delivery plan says avoidable deaths should be ‘never events’ but her critical condition was made worse by inadequate treatment and without specialist services cases like this will keep recurring.

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Adam @abrokenbattery.bsky.social · 01/02/2026

CW: assisted suicide, severe ME/CFS Sadly, Samuel, 21, died on 30 Jan after living with severe ME/CFS. His doctor warns about the number of patients being failed by the system: “I keep hearing the phrase - I don’t want to live like this anymore” www.heute.at/s/samuels-ar...

heute.at

Samuels Arzt erhebt im ORF schwere Vorwürfe | Heute.at

ME/CFS: Der 21-jährige Samuel aus Österreich wählte nach schwerer Krankheit den assistierten Suizid. Die Hintergründe zum tragischen Fall.

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Tom Kindlon @tomkindlon.bsky.social · 31/01/2026

Extract from "An Essay on Living with Severe ME" virology.ws/2026/01/27/t... Blog post written by someone living with very severe ME but most of the points are pretty general, relevant for people of all severities #MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome 1/

"First of all, the problem with fatigue in ME is not up front, in how much you can do in the first place. The problem is how much you can recover from. The disease is defined by exertion intolerance, which sounds like a euphemism for laziness, but in fact it means that your body doesn’t respond to exertion in the normal biological way and you don’t recover properly from even trivial effort."

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Adam @abrokenbattery.bsky.social · 30/01/2026

New article on Savannah’s case. Queen Elizabeth Hospital has declined to take up Sonya Chowdhury’s offer to advocate. Savannah remains without nutrition. Fluids restored after pressure, pain meds reduced, and she is still at serious risk. www.thecanary.co/uk/analysis/...

thecanary.co

London hospital STILL starving severe ME patient, Savannah — bias medical approach to blame

A South London hospital is still putting severe ME patient Savannah's life at risk and a clinician who psychologises ME might be why.

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The Canary @thecanaryuk.bsky.social · 22/01/2026

URGENT: An NHS hospital is starving a severe ME patient & has now stopped giving her fluids. Savannah has now lived with severe ME for several years - but the Queen Elizabeth Hospital in South London is putting her life at risk. @h-sharland.bsky.social has the story www.thecanary.co/uk/analysis/...

thecanary.co

An NHS hospital is starving a severe ME patient and has now stopped giving her fluids

Savannah has now lived with severe ME for several years - but the Queen Elizabeth Hospital in South London is putting her life at risk

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EndMalnutritioninME @malnutritionme.bsky.social · 22/12/2025

To avoid risking flare ups and relapse in people with #severeME, NICE recommends conducting a risk assessment for each interaction. #EndMalnutritionInME

Risk assess each interaction with a person with severe or very severe ME/CFS in advance to ensure its benefits will outweigh the risks (for example, worsening their symptoms) to the person. For people with very severe ME/CFS, think about discussing this with the person's family or carers on their behalf (if appropriate), while keeping the focus of the engagement on the person with ME/CFS.

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Whitney Dafoe @whitneydafoe.bsky.social · 19/12/2025

I started eating again in 2024. After 11 years not eating a crumb of food or a drop of water. In 2025 I have started ‼️ TALKING ‼️ again after 12 years of not saying a word to anyone! What will 2026 bring❓ 👀 Watch, Listen and Read the whole post in my blog: www.whitneydafoe.com/mecfs/?post=...

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Sue Marsh @suey2y.bsky.social · 19/12/2025

Today's Post : "Maeve's Story" We MUST talk about ME. And start treating it as the deadly illness it can be. open.substack.com/pub/undercla... Please read, RT and subscribe.

open.substack.com

Maeve's Story

"I was hungry and thirsty, were you there? Were you there?"

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Adam @abrokenbattery.bsky.social · 13/12/2025

Sioned Williams in Welsh Parliament talking about severe and very severe ME/CFS. It can be “as disabling as late-stage MS or advanced cancer but doesn't get a fraction of the acknowledgement, understanding or funding”.

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Tom Kindlon @tomkindlon.bsky.social · 31/10/2025

Rosie Barrett, writes on #SevereME & hospital care www.thereforme.uk/p/sensory-he... "Hospitals should be places of healing – but for people with severe ME, they are often sources of harm." Screenshot from @chronicliving123.bsky.social newsletter chroniclivingtherapy.com/5-elsewhere-... #MEcfs

Rosie Barrett, writes on Severe ME and hospital care
Rosie Barrett, full time carer for her sister who has very severe ME, writes for ThereForME‘s website about the way that hospitals fail people with ME/CFS and what is needed to support patients better. She writes about the UK but readers from around the world will recognise shared issues.

Hospitals should be places of healing – but for people with severe ME, they are often sources of harm.
The NHS urgently needs to create sensory-safe spaces. These aren’t ‘nice-to-haves’ – they are essential for people with ME and others with complex neurological conditions. The one-size-fits-all approach to hospital care simply does not work for patients like Alice.

from Sensory Hell and Medical Harm by Rosie Barrett on the ThereForME website

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Tom Kindlon @tomkindlon.bsky.social · 01/10/2025

‪2/‬ ‪“These results indicate that it may be beneficial for severely and very severely affected ME/CFS patients to be cared for in an environment where they are met with respect, understanding with the aim to reduce PEM as much as possible.”‬ ‪# #VerySevereME‬ #MEcfs #CFS #PwME #SevereMEcfs

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Tom Kindlon @tomkindlon.bsky.social · 01/10/2025

Exciting to see this 🔥 Specialised care for severely affected ME/CFS patients Free: www.tandfonline.com/doi/full/10.... Would be great to have such facilities in countries around the world. Approach is very different from the (inappropriate/dangerous) rehab/BPS approach #MEcfs #SevereME #PwME

ABSTRACTIntroduction: A specialised care unit for severely and very severelyill ME/CFS patients opened in 2021. The results from the first 3 yearsare reported.Methods: People with ME/CFS who were diagnosed according tothe Canadian Consensus Criteria, who are aged 18 or above withsevere or very severe ME/CFS according to the UK NICEguidelines, are eligible to stay at Røysumtunet. The study designis a retrospective review of medical records.Results: Between June 2021 and June 2024, 24 ME/CFS patients, 20women and 4 men with a confirmed diagnosis of ME, wereadmitted to the unit for stays of at least 3 months. Seventeenwere very severely affected and 7 were severely affected. Agesranged from 18 to 68 years, with mean (SD) 37.5 (12.8) years.Seven patients showed significant improvement (p < 0.01), andfive others showed some improvement. In total 50% improved (p< 0.01). Patients who improved were borderline significantlyyounger than those who did not, with a mean age of 30.3 (SD12.6) years compared to 39.8 (SD 11.8) years (p = 0.06). The meanduration of disease was 2.3 (1.3) years for those who improvedversus 6.7 (3.9) years for those who did not improve (p < 0.05).Conclusion: This is the first report of a specialised care unit for themost severely ill ME/CFS patients. Fifty per cent of patients showedsignificant or partial improvement. The mechanisms behind theseimprovements are discussed but require further exploration infuture studies.

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Adam @abrokenbattery.bsky.social · 10/08/2025

Full Article - The Times As my daughter died of ME, the state met in secret to blame me Maeve Boothby O’Neill’s mother had no idea she was being accused in private of causing or fabricating the illness that would take her life aged 27 archive.ph/2025.08.09-2...

archive.ph

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Solve M.E. @solveme.bsky.social · 08/08/2025

What if your body couldn’t bear light, sound, movement — or even touch? Today, #SevereMEDay, we ask you to imagine living that way not just for a day… but for years. For people living with Very Severe ME, this isn’t a metaphor — it’s reality. 🧵

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Adam @abrokenbattery.bsky.social · 08/08/2025

Clip from yesterday’s BBC Radio Wales: Robert’s son has lived with #MECFS since age 11. Today is #SevereME Day and his 33rd birthday. At his worst, he was too ill to speak, turn his body or his head — and had to be tube-fed. Most doctors have no idea it can be this severe.

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Whitney Dafoe @whitneydafoe.bsky.social · 07/08/2025

To all those living in silence and darkness. Today we take a moment of silence to honor your courage, your bravery, your resilience, your strength, and we acknowledge your profound suffering, agony and loss… Read the whole piece here: www.whitneydafoe.com/mecfs/?post=... #SevereMECFSAwarenessDay

whitneydafoe.com

A Moment of Silence for Severe ME/CFS Patients

To all those living in silence and darkness. Today we take a moment in silence and darkness to honor your courage, your bravery, your resilience, your strength, and we acknowledge your profound suffe...

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Carole Bruce @cabruce.bsky.social · 08/08/2025

This has been my lived reality for 32 years in this one room. Severe #ME. No treatment because there has been no serious research funding. The psych/behavioural lobby make sure of this despite ample proof of physiological damage. How many more generations will live in dark rooms alone and ignored?

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Niko Suvisto @nikosuvisto.com · 08/08/2025

On this Severe ME Awareness Day, I present to you my newest exhibition: “In the Absence of Light”. 1/3 www.aquietstorm.me/in-the-absen... #MECFS #SevereME #SevereMEday #pwME #Photography

A black and white photo of a hand resting on a pillow, lighted by a flash in an otherwise dark bedroom.

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Illustrator Interrupted @franceyme.bsky.social · 08/08/2025

Severe ME terrifies me more than death, so I kept putting off having to think about it, or write about it. But after listening to Emerge Australia’s Severe ME Day Symposium this afternoon, I was compelled to write this… substack.com/home/post/p-...

substack.com

Today is Severe ME Awareness Day

I don’t like thinking about the most severe end of the ME spectrum.

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EndMalnutritioninME @malnutritionme.bsky.social · 05/08/2025

In severe #ME, everyday activities such as washing, eating, and talking can cause post-exertional malaise (PEM) which can cause flare ups or relapses. #SevereMEWeek

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#MEAction Network @meactnet.bsky.social · 05/08/2025

"Severe ME has almost made me forget about the dancer in me." Anil van der Zee Former professional ballet dancer. See more stories from people with Severe Myalgic Encephalomyelitis: www.meaction.net/2019/08/08/t... #pwME #myalgicE

Photo of Anil and his cat. A man with medium skin tone and facial hair lies in darkened room as his cat looks on. Text: "Severe ME has almost made me forget about the dancer in me." Anil van der Zee Former professional ballet dancer.

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#MEAction Network @meactnet.bsky.social · 05/08/2025

Merryn had Very Severe ME for 6 years. She was totally bedbound, tube fed intravenously (TPN) due to gastro intestinal failure, unable to bear light, noise, touch or movement She suffered with horrific pain but never lost her big beautiful smile. Merryn died just 10 days after her 21st birthday.

Photo of Merryn Crofts- white young woman with dark hair lying in bed with an oxygen mask on. Text beside photo: "Merryn had Very Severe ME for 6 years. She was totally bedbound, tube fed intravenously (TPN) due to gastro intestinal failure, unable to bear light, noise, touch or movement She suffered with horrific pain but never lost her big beautiful smile." Under photo: Merryn Crofts died just 10 days after her 21st birthday, following an inquest her official cause of death was M.E.

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Solve M.E. @solveme.bsky.social · 05/08/2025

This #SevereME Awareness Month, we recognize those living with the most severe & isolating form of #MECFS. Solve & @batemanhornecenter.bsky.social co-hosted a 4-part series on caregiving, legal planning, treatment, and research. Watch Pt. 1 on Caregiving: ow.ly/6CUn50WAoW4 #UnitedForME

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EndMalnutritioninME @malnutritionme.bsky.social · 06/08/2025

Sensory stimuli can cause a flare up or relapse in people with #severeME, so they require a low sensory environment—minimal light, noise, touch, movement, chemicals, and odours. #SevereMEWeek www.mdpi.com/2227-9032/9/...

mdpi.com

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