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

🚨New survey alert 🚨 The experiences of healthcare professionals living with Long COVID (with PEM) and/or ME All information can be found on the landing page here. www.physiosforme.com/hcpwithmesur...

Post-exertional malaise is the cardinal symptom of #ME. In people with #severeME, even chewing food can trigger post-exertional malaise. #UKMAW2025 #EndMalnutritionInME

#ME is an energy-limiting illness causing difficulty in obtaining and preparing meals at all levels of severity. For those with #severeME, even holding cutlery, chewing, and swallowing may be impossible. #UKMAW2025 #EndMalnutritionInME

There are a number of reasons why people with #ME have difficulties accessing even basic—let alone good—nutrition. #UKMAW2025 #EndMalnutritionInME

On Wednesday 19th November, Helen Baxter of The 25% ME Group will be presenting at the #UKMAW2025 learning event organised by @malnutritiontf.bsky.social. She will be talking about #ME, nutrition, and NICE guidance. #EndMalnutritionInME www.malnutritiontaskforce.org.uk/ukmaw2025-le...

Some people with very #severeME cannot meet their nutritional needs and require tube feeding. Early intervention tube feeding has been shown to be beneficial in these cases. #UKMAW2025 #EndMalnutritionInME

Monitoring weight is important for malnutrition screening, but it may be impossible for people with #severeME to be weighed. Instead, look for visual evidence, assess dietetic intake, use MUAC, and note problems such as dysphagia. #UKMAW2025 #EndMalnutritionInME

Malnutrition screening is important in patients with #severeME. #EndMalnutritionInME

Today marks the beginning of Malnutrition Awareness Week #UKMAW2025 - the focus is on screening which can begin with a simple conversation. Ask about appetite, weight loss, and eating habits. Use our conversation guide to help: bit.ly/4qSHLNL

Clague-Baker et al (2023). Home-based testing protocol to measure physiological responses to everyday activities in ME: a feasibility study This study, funded by the MEA, tested whether we can measure ME/CFS symptoms during normal activities at home. https://tinyurl.com/p2pd79hu #MECFS

Please sign this petition calling on the UK Government to provide more funding for biomedical research into, and education on, #ME if you haven't already done so. The deadline is 30th December 2025. petition.parliament.uk/petitions/72...

This booklet by @malnutritiontf.bsky.social is written for older people, but may be helpful for people with #ME of all ages having difficulties eating. E.g. tips for fortifying food, eating soft food to avoid chewing, using meal delivery services. www.malnutritiontaskforce.org.uk/sites/defaul...

This study found impaired gastric motility and symptoms in #ME even after a meal which has high tolerability in healthy people. "We found signs of gastric dysmotility expressed as impaired gastric accommodation and antral distention." #EndMalnutritionInME www.tandfonline.com/doi/10.1080/...

Research is urgently needed into dysautonomia and gastrointestinal impairments in #ME. Clinical expertise and guidance are lacking and leaving patients malnourished. #EndMalnutritionInME www.meresearch.org.uk/gut-disorder...

Classic symptoms of mast cell activation syndrome (MCAS) include nausea, abdominal pain, bloating, cramping, diarrhoea, and other symptoms common in ME. #MCAS may cause or contribute to digestive problems in people with #ME. www.jacionline.org/article/S009...

People in the UK with #ME and #LongCOVID can complete the Big Survey, which is run every five years. There is a separate survey for under 17 year olds. The deadline is 27th January 2026. You can complete the survey online or on paper.

Lives We Cannot Live is now open at the OXO Tower in London! We've asked visitors to share how they feel after walking around the exhibition. Scroll through the pictures to see what some members of our community have to say. Visit the exhibition: https://meassociation.org.uk/g59o #MECFS

If you have ME/CFS and need to have an anaesthetic, our resources can help you prepare. We worked with people with ME/CFS, including Kevin Coyne (pictured), to answer common questions and concerns 👉 ow.ly/960f50VQYqc #MEAwarenessMonth #WorldMEday @meassociation.bsky.social

Almost all people with #ME in this study had symptoms of autonomic dysfunction. The autonomic system regulates (among other things) the gastrointestinal tract. Impairment leads to digestive problems which can result in malnutrition in #severeME. #EndMalnutritionInME www.mdpi.com/3485610

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

Today's #ThereForME blog shares findings from a mini survey. We asked carers and clinicians with experience supporting people with v severe ME whether the Health Secretary should commission a service for v severe ME - and if so, what it should look like. Link in next post 👇

People with #ME are at risk of relapse after visiting or admission to hospital. Help them by: 🔹Not altering their daily meds and supplements 🔹Reducing sensory stimuli to a bare minimum 🔹Providing artificial nutrition at an early stage. #WorldPatientSafety meassociation.org.uk/wp-content/u...