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adarkenedroom.bsky.social
A Darkened Room
@adarkenedroom.bsky.social
510 followers 440 following 14 posts
One of the #millionsmissing || Raising awareness of the most severe form of #MyalgicEncephalomyelitis
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tomkindlon.bsky.social
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
October 31, 2025 at 1:51 AM
Reposted by A Darkened Room
tomkindlon.bsky.social
‪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
October 1, 2025 at 7:26 PM
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tomkindlon.bsky.social
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.
October 1, 2025 at 6:54 PM
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abrokenbattery.bsky.social
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...
August 10, 2025 at 7:10 AM
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solveme.bsky.social
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. 🧵
August 8, 2025 at 3:55 PM
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abrokenbattery.bsky.social
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.
August 8, 2025 at 10:26 AM
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whitneydafoe.bsky.social
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
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...
www.whitneydafoe.com
August 7, 2025 at 3:28 PM
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cabruce.bsky.social
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?
August 8, 2025 at 6:05 AM
Reposted by A Darkened Room
nikosuvisto.com
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.
August 8, 2025 at 6:42 AM
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franceyme.bsky.social
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-...
Today is Severe ME Awareness Day
I don’t like thinking about the most severe end of the ME spectrum.
substack.com
August 8, 2025 at 8:13 AM
Reposted by A Darkened Room
malnutritionme.bsky.social
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
August 5, 2025 at 3:38 PM
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meactnet.bsky.social
"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.
August 5, 2025 at 7:39 PM
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meactnet.bsky.social
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.
August 5, 2025 at 7:39 PM
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solveme.bsky.social
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
August 5, 2025 at 9:57 PM
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malnutritionme.bsky.social
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/...
www.mdpi.com
August 6, 2025 at 7:30 AM
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malnutritionme.bsky.social
For people with severe #ME, even speaking can risk post-exertional mailaise, and they often need carers to speak for them.
#SevereMEWeek
August 6, 2025 at 10:13 AM
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decodemestudy.bsky.social
Our initial DNA results! DecodeME have discovered that people with an ME/CFS diagnosis have significant genetic differences compared to the general population.
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Summary of our results: shorturl.at/pgsjk
Check out our full preprint paper: shorturl.at/VwN3s
DecodeME: The Results announcement post. The graphic has a blue background with a DNA helix. In the centre of the graphic it says ‘We have released our initial DNA results! We have discovered that your genes contribute to your chances of developing ME/CFS.’ At the bottom left of the graphic is an image of a research paper.
August 6, 2025 at 6:24 PM
Reposted by A Darkened Room
meassociation.org.uk
1/4 This week in Severe ME Awareness Week, 4th - 10th August 2025

It is estimated that at least 404,000 people in the UK have ME and around 25% of these people may have severe or very severe symptoms for prolonged periods.

https://meassociation.org.uk/me-cfs-severe-me-week/

#SevereME #SMEWeek2025
IMAGE DESCRIPTION: Photo of a woman with ME lying in bed with an eye mask and headphones on, submitted as part of our Real ME campaign. Heading - Severe ME Awareness Week, 4th - 10th August 2025 IMAGE DESCRIPTION: Photo of a woman with ME lying in bed, submitted as part of the Real ME Campaign. Wording - It is estimated that at least 404,000 people in the UK have ME and around 25% of these people may have severe or very severe symptoms for prolonged periods. Severe ME Awareness Week, 4th - 10th August 2025. IMAGE DESCRIPTION: Photo of a woman with ME lying in bed, being spoon fed by a man, submitted as part of the Real ME Campaign. Wording - The severity and intensity of ME symptoms means that people with severe ME can be housebound/bedbound for years often needing 24 hour care to maintain activities of daily living. Severe ME Awareness Week, 4th - 10th August 2025 IMAGE DESCRIPTION: Photo of a man with ME lying in bed with a eye mask on, submitted as part of the Real ME Campaign. Wording - Patients have suffered decades of misunderstanding and misconceptions, which has further compounded the effects of this life changing illness. Severe ME Awareness Week, 4th - 10th August 2025
August 4, 2025 at 9:30 AM
Reposted by A Darkened Room
valebodi.bsky.social
Understanding severe ME by the world ME alliance

“Severe and very severe ME/CFS represents one of the most profound states of disability found in medicine.”
– @batemanhornecenter.bsky.social , USA

worldmealliance.org/what-is-me/s...

#ME/Cfs #pwME #SevereME #SevereMEDay #ICDG93.3 #ICDG93.32
Severe ME - World ME Alliance
worldmealliance.org
August 4, 2025 at 6:35 PM
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swastrosarah.bsky.social
@meactionuk.bsky.social @meactnet.bsky.social please boost on other platforms. We are scrambling for lawyers to get the sister out as the top priority. I am speaking with national print media this morning.
swastrosarah.bsky.social sarah boothby @swastrosarah.bsky.social · Jul 31
Isla's mother has been arrested under suspicion of causing her death from ME last year (heart failure). There was no inquest. Isla's younger sister (15), who also has ME, has been removed from the only people who understand how the disease must be managed. Imagine her fear.
#MEKills #HumanRights
July 31, 2025 at 7:11 AM
Reposted by A Darkened Room
abrokenbattery.bsky.social
Clip from Greatest Hits Radio (Sussex). Karen Gordon has been in hospital for 1 year and 7 months, reliant on TPN and IV fluids. East Sussex Healthcare NHS Trust is reportedly considering taking her to court to evict her without this life-saving nutritional support.
July 29, 2025 at 12:11 PM
Reposted by A Darkened Room
murtoz.bsky.social
CW: Medical abuse of a person with severe ME.

As if to underscore the plan's inadequacy, this petition just found me this morning. YET ANOTHER young woman being refused essential care by the NHS because they *STILL* don't believe ME is biological. Please sign and share widely.
Sign the Petition
Save Savannah Victora-May - Prevent Another ME/CFS Tragedy
www.change.org
July 23, 2025 at 8:09 AM
Reposted by A Darkened Room
batemanhornecenter.bsky.social
Caring for someone with severe ME/CFS? A low-stimulus space matters:
✔️ Dim lights
✔️ Quiet sounds
✔️ Gentle touch
✔️ Fragrance-free
✔️ Temp control

Download the Crash Survival Guide: loom.ly/wwxe9SU
#SevereME #MECFS #CaregiverSupport #ChronicIllnessCare @openmedf
Graphic titled 'Caregiver Guidance' with a photo of a dark, cozy bedroom. Text advises reducing or limiting sensory stimuli—light, noise, touch, smell, and temperature—to provide a quiet, sensory-free environment. Bateman Horne Center and MERC logos appear at the bottom.
June 30, 2025 at 3:49 PM
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irishmecfsassoc.bsky.social
27/
(Contd)

Includes comments from professionals (incl. Drs Muirhead/Weir/Speight/Shepherd/Nacul & Caroline Kingdon (nurse), patients & carers (incl. Association chairperson) Discusses various distressing topics www.dialogues-mecfs.co.uk/films/severe... Day 27

#mecfs
Severe & Very Severe ME / CFS - Dialogues
www.dialogues-mecfs.co.uk
May 27, 2025 at 12:23 PM
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irishmecfsassoc.bsky.social
27/

27/

May is Myalgic Encephalomyelitis (M.E.) Awareness Month.

You can help by sharing and/or liking this 15-minute video on #SevereME & #VerySevereME: "Severe & Very Severe ME / CFS Myalgic Encephalomyelitis / Chronic Fatigue Syndrome"
(Contd)
Severe & Very Severe ME / CFS - Dialogues
www.dialogues-mecfs.co.uk
May 27, 2025 at 12:23 PM