"Our study joins a growing body of work by scholars and patient advocates calling for recognition, respect, and reinvestment in the lives of those with severe ME/CFS These individuals are not invisible by choice; they are rendered invisible by systems that refuse to acknowledge their existence and suffering. Listening to their voices is a moral imperative, a research necessity, and a first step toward justice." RESEARCH UK INFORM. INFLUENCE. INVEST. SCO36942 Nezamdoust and Ruel. Social Science & Medicine (2026)

ME Research UK:

A team of researchers have published a study investigating lived experiences of people with ME/CFS using data from posts made on social media.

Read more: tinyurl.com/mj2p8c24

#mecfs #cfs #pwme #severeme #severemecfs

This is a patient safety issue.
@patientsafetywatch.bsky.social @patientsafetylearning.org

This week we were informed by DHSC, alongside other organisations, that DHSC and NHS England have delayed discussions on commissioning a specialised service for very severe ME until April 2027.

This means yet another year without NHS care for people with very severe ME.

(1/3)

#Dietitians can help people with #ME to explore how they can support their food and fluid intake through:

🔹Posture
🔹Eating and drinking aids
🔹Soft foods that are easier to swallow and do not need to be chewed.

#NHWeek #EndMalnutritionInME

People with #ME may need help from #dietitians to optimise their diet so as to balance energy demands and symptom management with obtaining sufficient food and drink.
#NHWeek #EndMalnutritionInME

Today is Swallowing Awareness Day, so we’re highlighting how dysphagia affects nutrition, hydration & overall wellbeing. Explore our practical leaflets to support safe eating & drinking for people with swallowing difficulties:
Professionals – bit.ly/3NvYszC
Patients/carers – bit.ly/4cD5c93

People with #severeME sometimes have problems with swallowing. Nutritional support may be necessary to prevent life-threatening malnutrition.
#EndMalnutritionInME #SwallowAware2026

Digestive problems are common among people with #ME, yet they receive little attention by clinicians and researchers. Given the effects they can have on nutrition and hydration, research is urgently needed.
#EndMalnutritionInME
@britsocgastro.bsky.social @worldgastroorg.bsky.social

Timely support from #dietitians can prevent life-threatening malnutrition in #ME and help to avoid unnecessary admissions to hospital.
#EndMalnutritionInME

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.

🧵
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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@ashleydaltonmp.bsky.social
Your words “these must become never events”

PLEASE INTERVENE TO SAVE LIFE
Savannah has not eaten for 9 weeks. There are no NHS services for severe ME - 7 months since publication of the Delivery Plan for ME/CFS

www.meresearch.org.uk/claims-of-nh...

Thanks to The Times for highlighting Savannah’s story and the critical issue that there is no specialist NHS service for very severe ME. Grateful to Ashley Dalton for our recent brief call but still waiting for progress report re ME Plan commitment to explore such a service, including treatments.

bsky.app/profile/abro...

Vink & Vink-Niese argue that *mild* #ME is, in fact, a *severe* disease, defined by a loss of 50% of function. this leaves people with moderate, severe, and very severe ME extremely ill. They add a fifth category of extremely severe which is a living death.
www.mdpi.com/2077-0383/15...

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

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/f/severemerg...

Karen has had a Central Line put in & also has Septicaemia – an infection in the blood Image: February 2026 - Karen with her Central line Hello Everyone Karen has now been in Conquest hospital in East Sussex for 2 years and 1 month.  On Tuesday the 3rd of February Karen’s TPN was stoppe...

c.org/N6qvQBctPy

A picture of a young woman and man together smiling (Karen and James). Overlaid on the picture: "When I first came across CHC funding it felt like the perfect fit [...] Their initial assessment concluded he was eligible. Yet, one year on both our CHC application and subsequent appeal have been rejected." Karen Hargrave. New #ThereForME Substack post.

In this week's #ThereForME blog our co-founder @karenlhargrave.bsky.social writes about the challenges she and her husband James have faced accessing NHS Continuing Healthcare funding.

She explains why CHC funding for very severe ME is an issue that deserves attention.

🔗 in next post 👇

www.mdpi.com/2077-0383/15...

This article shows why doctors fail #severeME patients when the disease has progressed to needing nutritional intervention.

The doctors do not believe:
🔹 that ME is a physical disease. (It is)
🔹 that this patient has the disease. (They do)
🔹 that ME can be this bad. (It can)
#EndMalnutritionInME

London hospital STILL starving severe ME patient, Savannah — biased 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.

#ME #SevereME #EndMalnutritionInME

London hospital STILL starving severe ME patient, Savannah — biased medical approach to blame www.thecanary.co/uk/analysis/...

This article describes a case report in which a patient with #severeME dying of malnutrition was denied the home parenteral nutrition she needed.
#EndMalnutritionInME
www.mdpi.com/2077-0383/15...

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

#ME #EndMalnutritionInME
@bapen.bsky.social @mnpathway.bsky.social
www.thecanary.co/uk/analysis/...

In this study, 25% of #ME patients had mast cell activation syndrome and responded to mast cell targeted therapies. Mast cell activation in the gastrointestinal tract can cause symptoms such as abdominal pain, nausea, vomiting, and diarrhoea.
#EndMalnutritionInME
www.mdpi.com/2075-4418/15...

Co-morbidities: Irritable bowel syndrome; mast cell activation disorder, postural tachycardia syndrome, fibromyalgia, gastroparesis.

Co-morbidities are common in #ME. These add to the symptoms and can contribute to problems with eating and drinking.
#EndMalnutritionInME

IMAGE DESCRIPTION: Photo of a science lab. Photo of Professor Danny Altman. Heading - MEA Rosetta Stone study featuring on BBC Inside Science tonight! ME Association logo.

Today on Radio 4 BBC Inside Science at 4.30 pm, the ME Association's Rosetta Stone study may be featured! 

You should be able to watch it via the link here after the 4:30pm broadcast on 8/01/2025: https://www.bbc.co.uk/programmes/w3ct8txt

#MECFS #RosettaStone

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

Written questions and answers - Written questions, answers and statements - UK Parliament Information from UK Parliament on written questions & answers, written statements and daily reports.

Parliamentary Question: To ask the Secretary of State for Health and Social Care, what assessment he has made of patient safety risks, including those relating to malnutrition, among people with severe and very severe ME/CFS in England.

questions-statements.parliament.uk/written-ques...

Written questions and answers - Written questions, answers and statements - UK Parliament Information from UK Parliament on written questions & answers, written statements and daily reports.

questions-statements.parliament.uk/written-ques...

www.nice.org.uk/guidance/ng2...