How this woman with severe ME/CFS is being treated is inhumane. Please help if you can.
www.gofundme.com/f/severemerg...
28.02.2026 09:41
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How this woman with severe ME/CFS is being treated is inhumane. Please help if you can.
www.gofundme.com/f/severemerg...
ME Respite logo ANZMES logo Hospital Care Plan for Severe-Very Severe ME/CFS and long COVID (and associated conditions, e.g.: dysautonomia) Resources Introduction A care plan for hospital patients with severe to very severe ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome) or long COVID involves a multidisciplinary approach to address the complex and debilitating symptoms these patients experience.
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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
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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
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.
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...
"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."
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
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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/...
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/...
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.
To avoid risking flare ups and relapse in people with #severeME, NICE recommends conducting a risk assessment for each interaction.
#EndMalnutritionInME
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=...
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.
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”.
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
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
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“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
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.
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
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...
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. 🧵
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.
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
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?
A black and white photo of a hand resting on a pillow, lighted by a flash in an otherwise dark bedroom.
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
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-...
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
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.
"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 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.
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.
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
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/...
For people with severe #ME, even speaking can risk post-exertional mailaise, and they often need carers to speak for them.
#SevereMEWeek
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.
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
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
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
