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

🧵 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/

@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.

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

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 👇

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

#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...

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

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

To avoid risking flare ups and relapse in people with #severeME, NICE recommends conducting a risk assessment for each interaction. #EndMalnutritionInME

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...

2021: NICE guidance states: "Refer people with severe or very severe ME/CFS for a dietetic assessment by a dietitian with a special interest in ME/CFS." 2025: The govt has no information as to whether such #dietitians exist. #ME @bapen.bsky.social #EndMalnutritionInME

Helen Baxter, Patient Advocate and PPI Representative: "These results greatly enhance our understanding of the biology of ME and present opportunities for drug repurposing which affords hope to the millions of people living with #ME and #longCOVID around the world." @precisionlife.bsky.social

New myalgic encephalomyelitis (ME, also known as ME/CFS) genetics study reveals 250+ core genes, shared mechanisms with long COVID, and dozens of drug repurposing opportunities. This would not have been possible without the thousands of people with ME who contributed their data. Thank you.

LOCOME Project: Major #ME and #LongCOVID Genetics Findings Announced. Today we are excited to share landmark new findings from the LOCOME project. www.medrxiv.org/content/10.6... @precisionlife.bsky.social

Webinar today at 20:00 GMT by the Brain Inflammation Collaborative. Discover, unhide® Innovate - Accelerate Research for Complex Chronic Illnesses. Covering patient-centred research into #ME and related illnesses. api.neonemails.com/emails/conte...

Attending a clinic can cause post-exertional malaise in #ME patients, but reasonable adjustments can be made to help - for example, appointments by telephone/video, or low sensory environments and facilities to lie down in the clinic. #EndMalnutritionInME

#ME #Carers

#EndMalnutritionInME #SevereME #ME

Viruses can persist and reactivate in mucosal tissue (e.g. in the gastrointestinal tract) long after initial infection. Research into the role of such viral reservoirs in #ME could help to understand and treat the disease. www.mdpi.com/3595296

These infosheets may be helpful for people with #ME having nutritional problems.

Remember those groups who are particularly at risk of malnutrition - especially those with chronic conditions, frailty, neuro-disability or undergoing rehab. Use every interaction to screen, support & signpost. www.malnutritionpathway.co.uk #MAW2025 - Every Contact Counts

Due to #healthinequalities, patients with #ME may present late to dietetic services. They may have experienced stigma from HCPs due to lack of knowledge about #ME. It is important to take their symptoms seriously. #UKMAW2025 #EndMalnutritionInME

There is an unmet need for dietetic support for people with #ME of all severities. #Dietitians can make an enormous difference to the lives of people with ME, particularly those with #severeME. #UKMAW2025 #EndMalnutritionInME

This publication describes #ME case studies in which nutritional difficulties were left untreated resulting in life-threatening malnutrition. All the patients were admitted to hospital with BMIs ranging 11.4 to 14.7. #UKMAW2025 #EndMalnutritionInME www.mdpi.com/2227-9032/9/...

Carers have the right to be identified as a carer on the GP practice's medical records. www.carersuk.org/help-and-adv... #ME #CarersRightsDay

Carers have the right to request a carer's assessment from their local authority. This can determine what help and support can be provided to the carer. This is separate from a dependant's assessment. #ME #CarersRightsDay www.nhs.uk/social-care-...

Carers who are employed have the right to request up to a week per annum of unpaid leave to give or arrange care for a dependant. #ME #CarersRightsDay www.gov.uk/carers-leave

Carers who are employed have the right to request flexible working arrangements, such as changing their hours of work or where they work. #ME #CarersRightsDay www.gov.uk/flexible-wor...

Many people with #severeME are cared for by family members or friends. On #CarersRightsDay we highlight the rights of these unpaid carers.

Tessa Munt MP on #severeME: "The risk of death—specifically from malnutrition—is real and ongoing." #EndMalnutritionInME #UKMAW2025

#ChallengesTuesday & Solutions Small changes can boost the nutritional content of everyday foods. Chris made these three changes and added 1089kcal and 59.3g protein to help halt their weight loss. #MAW2025 #MKUH

How #dietitians and the wider MDT can help people with #ME. #UKMAW2025 #EndMalnutritionInME

The consquences of #ME, such as disturbed sleep patterns and food intolerances, as well as gastrointestinal symptoms can make it difficult to follow conventional healthy eating patterns, meal composition, and meal times. #UKMAW2025 #EndMalnutritionInMe

Co-morbidities of #ME can compromise nutritional intake. #UKMAW2025 #EndMalnutritionInME