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 #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

‪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

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?

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

"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

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

Our initial DNA results! DecodeME have discovered that people with an ME/CFS diagnosis have significant genetic differences compared to the general population. - Summary of our results: shorturl.at/pgsjk Check out our full preprint paper: shorturl.at/VwN3s

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

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

@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.

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.

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.

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

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

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)

Everyone needs to watch this. Everyone. Especially people who work in health care, journalism and politics, or remember what the word "solidarity" means. We can't fight for ourselves, we're busy trying to survive. Please help us fight for better care. #PwME #SevereME #NEISvoid

Patients with severe #MECFS need hope in the form of evidence-based interventions, not opinions @binitakane.bsky.social @daltmann.bsky.social @putrinolab.bsky.social @sunny-rae1.bsky.social @davidjoffe64.bsky.social @ahandvanish.bsky.social www.bmj.com/content/389/...

"Hope for patients with severe ME would be better inspired by appropriate funding allocated to research and treatment. Patients should not have to ‘find their path’ [2] any more than a patient with lupus or multiple sclerosis" Excellent response to BMJ opinion piece. www.bmj.com/content/389/...

”Severe and very severe ME/CFS represents one of the most profound states of disability found in medicine. These patients are often completely housebound or bedbound, often unable to tolerate light, sound, movement, or touch. 1/7 🧵 batemanhornecenter.org/wp-content/u...

#MECFSAwarenessMonth – Day 8 2005: Sophia Mirza dies of severe ME. Prior to her death, she was wrongfully sectioned for refusing to attend a clinic offering Graded Exercise Therapy. Mistreatment during her stay led to a dramatic deterioration, and she never recovered.

When we explain PEM to doctors, carers etc. they usually get that active exertion (running, walking, showering, reading etc.) can lead to PEM. But often don’t understand passive exertion (being in a chair, noises, someone talking to you, hot temperatures etc.) can lead to PEM.

Severe ME in Children Dr. Nigel Speight www.researchgate.net/publication/... #ME/CFS #MyalgicE A current problem regarding Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is the large proportion of doctors that are either not trained or refuse to recognize ME/CFS as a genuine clinical

Today @thesicktimes.bsky.social: powerful op-ed by Severe ME advocate Sam Pearce, calling on ME and Long COVID organizations to better support the community's most vulnerable members. thesicktimes.org/2025/04/04/a...

Absolutely gutting news. Another person with ME/CFS died of starvation after being refused tube feeding. The NHS was warned about this months ago, after Maeve’s inquest. And nothing was done to improve the situation. The scariest part is that the cases we know of are only the tip of the iceberg.

URGENT! Please sign this petition to help Karen Gordon receive life-saving home-based IV feeding. Karen has very severe ME and is being denied home feeding by UCLH. The lack of understanding from those she should be able to rely on is dangerous. meassociation.org.uk/2025/03/kare...

Video Series: Severe ME/CFS: Care, Rights, & Research Links: solvecfs.org @solveme.bsky.social batemanhornecenter.org @batemanhornecenter.bsky.social www.youtube.com/playlist?lis... Image from Mass ME/CFS & FM Assoc March 2025 e-newsletter: massmecfs.org/newsletters/... #SevereME #MEcfs

Loving reminder that when you read posts from me or anyone w/ #MyalgicEncephalomyelitis: We're among those #pwME (persons w/ M.E.) who have the strength to post. People w/ #SevereME mostly exist in dark rooms, unable to move or to tolerate light or sound. It's a hellish existence. We need help

Memories tearing like tissue paper, Of all the dreams, I thought might be made real, Tearing into pieces so small, They float away, Into the forever night of ME/CFS… New post on my blog: www.whitneydafoe.com/mecfs/?post=... #MECFS #LongCovid

I wonder how many people have ever experienced their brain physically running out of energy making it so they cannot use their mind and have to lie still, unthinking, unfeeling - merely existing in a body.  This I believe is a torture no one but #MECFS patients understand.

“They are among the most underserved patient communities in the UK. The sickest lie in darkened rooms, sometimes unable to move, speak or even swallow. Those living with the most extreme forms of ME describe it as not a life but a bare existence” #MEcfs #PwME

I started eating real food again in 2024!…I have now stopped the Peptamen food formula completely, and get all my calories from real food!...And I want to tell you because I want you to hear this story!...what will 2025 bring? #MECFS New post on my blog: www.whitneydafoe.com/mecfs/?post=...

Dealing with someone with very severe ME can be frightening as most people, including medical doctors, have never seen a patient so ill. Understandably, there is a natural tendency for people (families and physicians) to panic, to worry that the person might die, and to rush the person to a

”Not only have they repeatedly ignored Line’s knowledge from living with her condition, now, they’re also dismissing patients, international experts, advocates, and a wealth of scientific evidence.” www.thecanary.co/global/world...

The local Swedish newspaper ST-tidningen writes about Jessika who suffers from severe ME and is fighting a long and hard battle to get basic and necessary care. Google translation www-sttidningen-se.translate.goog/nyheter/sten... #SevereME #MEcfs

Thinking of all the #pwME who live alone & are severe - very severe, house & bed bound & sending love & support to you all We urgently need the #ME orgs to recognise & demand far better support for this group of #pwME @meassociation.bsky.social @actionforme.bsky.social @meactionuk.bsky.social

Yet another severe ME/CFS patient is being threatened with detention in a psychiatric ward In Denmark, Line's medical team is trying to forcefully detain her in hospital. Predictably, they are doing so after labelling her #MEcfs as psychiatric #chronicillness www.thecanary.co/global/world...