A Darkened Room
@adarkenedroom.bsky.social
One of the #millionsmissing || Raising awareness of the most severe form of #MyalgicEncephalomyelitis
Reposted by A Darkened Room
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
#severeMEday #severeMECFS
An image on severe ME to mark severe ME day
#SevereME #SevereMEDay #SevereMECFS
#SevereCFS #VerySevereME
#SevereME #SevereMEDay #SevereMECFS
#SevereCFS #VerySevereME
August 8, 2026 at 7:27 AM
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
#severeMEday #severeMECFS
Reposted by A Darkened Room
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/wp-content/u...
#SevereMEDay
25megroup.org
August 8, 2026 at 7:57 AM
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/wp-content/u...
#SevereMEDay
Reposted by A Darkened Room
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.
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.
August 8, 2026 at 8:38 AM
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.
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.
Reposted by A Darkened Room
“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.
Evelien van den Brink calling for biomedical #MECFS research in European Parliament in 2019.
July 4, 2026 at 9:33 AM
“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.
Evelien van den Brink calling for biomedical #MECFS research in European Parliament in 2019.
Reposted by A Darkened Room
“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.
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.
June 19, 2026 at 1:30 PM
“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.
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.
Reposted by A Darkened Room
“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
Baroness Scott of Needham opening the House of Lords debate on Severe #MECFS
June 18, 2026 at 5:20 PM
“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
Baroness Scott of Needham opening the House of Lords debate on Severe #MECFS
Reposted by A Darkened Room
“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.
Caroline Kingdon, on the profound isolation experienced by people with severe #MECFS.
May 19, 2026 at 8:29 AM
“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.
Caroline Kingdon, on the profound isolation experienced by people with severe #MECFS.
Reposted by A Darkened Room
“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.
Former Team GB rower @oonagh_cousins on people with very severe #MECFS and #LongCovid and the importance to advocate for those who can’t.
May 26, 2026 at 3:18 PM
“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.
Former Team GB rower @oonagh_cousins on people with very severe #MECFS and #LongCovid and the importance to advocate for those who can’t.
Reposted by A Darkened Room
“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
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
May 28, 2026 at 10:26 AM
“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
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
Reposted by A Darkened Room
“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.
Our co-founder @karenlhargrave.bsky.social speaks to @theipaper.com about the financial cost of supporting a loved one with very severe ME.
May 24, 2026 at 7:51 AM
“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.
Our co-founder @karenlhargrave.bsky.social speaks to @theipaper.com about the financial cost of supporting a loved one with very severe ME.
Reposted by A Darkened Room
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...
#MEAwarenessWeek #EndMalnutritionInME
@patientsafetylearning.org @patientsafetywatch.bsky.social
www.youtube.com/watch?v=FRx7...
Helen Baxter V2
YouTube video by Malnutrition Task Force
www.youtube.com
May 13, 2026 at 12:51 PM
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...
#MEAwarenessWeek #EndMalnutritionInME
@patientsafetylearning.org @patientsafetywatch.bsky.social
www.youtube.com/watch?v=FRx7...
Reposted by A Darkened Room
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...
www.gofundme.com/f/severemerg...
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
www.gofundme.com
May 12, 2026 at 9:41 AM
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...
www.gofundme.com/f/severemerg...
Reposted by A Darkened Room
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
May 12, 2026 at 9:58 AM
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
Reposted by A Darkened Room
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
www.aquietstorm.me/myalgic-ence...
#MECFS #Photography #OnlineExhibition
May 12, 2026 at 7:29 AM
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
www.aquietstorm.me/myalgic-ence...
#MECFS #Photography #OnlineExhibition
Reposted by A Darkened Room
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
#MEAwarenessWeek
May 11, 2026 at 1:07 PM
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
#MEAwarenessWeek
Reposted by A Darkened Room
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.
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.
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
www.gofundme.com
May 10, 2026 at 7:11 PM
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.
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.
Reposted by A Darkened Room
“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.
Dr Nigel Speight describing a nurse’s reaction after he explained how to care for a patient with severe #MECFS.
May 9, 2026 at 9:15 AM
“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.
Dr Nigel Speight describing a nurse’s reaction after he explained how to care for a patient with severe #MECFS.
Reposted by A Darkened Room
“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
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
‼️ 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 #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
Buried Alive with M.E. (with subtitles)
YouTube video by Anil about ME
https://youtu.be/XhrAhGkrGuQ?is…
May 2, 2026 at 5:02 PM
“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
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
Reposted by A Darkened Room
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/
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/
April 12, 2026 at 10:37 AM
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/
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/
Reposted by A Darkened Room
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.
March 29, 2026 at 8:08 AM
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.
Reposted by A Darkened Room
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.
March 24, 2026 at 11:09 AM
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.
Reposted by A Darkened Room
How this woman with severe ME/CFS is being treated is inhumane. Please help if you can.
www.gofundme.com/f/severemerg...
www.gofundme.com/f/severemerg...
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
www.gofundme.com
February 28, 2026 at 9:41 AM
How this woman with severe ME/CFS is being treated is inhumane. Please help if you can.
www.gofundme.com/f/severemerg...
www.gofundme.com/f/severemerg...
Reposted by A Darkened Room
🧵
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/
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/
February 20, 2026 at 9:07 PM
🧵
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/
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/
Reposted by A Darkened Room
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
Sonya Chowdhury, CEO of Action for ME, describes the situation as “appalling” and says she is very worried Savannah could die.
archive.ph/J3Xv3
February 16, 2026 at 5:54 AM
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
Sonya Chowdhury, CEO of Action for ME, describes the situation as “appalling” and says she is very worried Savannah could die.
archive.ph/J3Xv3
Reposted by A Darkened Room
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.
February 5, 2026 at 6:12 PM
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.