Home Enteral Nutrition (HENS) Dietitians can be of enormous benefit to people with #severeME who are being tube fed at home. The 25% ME Group thanks all #dietitians who are supporting people with #severeME. #DietitiansWeek #EndMalnutritionInME

NICE NG206 recommends adjustments for people with #severeME when planning hospital care. #DietitiansWeek #EndMalnutritionInME

Malnutrition care is a team effort & dietitians are at the heart of it. They train colleagues, support decision‑making, advise on appropriate use of ONS & help ensure consistent care across settings, supporting healthcare professionals & carers to act early & confidently #DietitiansWeek #DW2026

#ME patients admitted to hospital for tube feeding are typically extremely ill, nursed at home in a darkened room. A hospital stay can be devastating for these patients, so #reasonableadjustments need to be made to prevent a relapse. #DietitiansWeek #EndMalnutritionInME

Some people with #severeME are unable to meet their nutritional needs. This may be due to gastrointestinal problems, swallowing difficulties, or due to extreme debility. Early tube feeding is beneficial for these patients. #DietitiansWeek #EndMalnutritionInME

NICE guideline NG206 refers to the NICE Clinical Guideline CG32 when people with #severeME need nutrition support, including oral nutritional support, enteral tube feeding, and parenteral nutrition. #DietitiansWeek #EndMalnutritionInME

Weight may need to be assessed by mid upper arm circumference, as people with #severeME may be unable to stand to be weighed nor tolerate being hoisted. #DietitansWeek #EndMalnutritionInME

Screening for malnutrition in people with #ME requires a screening tool such as MUST. #DietitiansWeek #EndMalnutritionInME www.bapen.org.uk/must-and-sel...

NICE guidance is to refer people with #severeME to a dietitian with special interest in #ME and to monitor those at risk of malnutrition. #DietitiansWeek #EndMalnutritionInME

NICE guideline NG206 addresses dietary management in #ME patients to minimise symptoms such as nausea and swallowing difficulties. It also acknowledges that purchasing and preparing food may be difficult. #DietitiansWeek #EndMalnutritionInME

Dietetic support can help #unpaidcarers to provide the best possible nutrition to their loved one. #DietitiansWeek #EndMalnutritionInME

It’s #DietitiansWeek & we’re celebrating the expertise, compassion & impact of dietitians across all care settings. Our June Resource of the Month is our PCN dietitians page which showcases the essential role they play in malnutrition care - www.malnutritionpathway.co.uk/pcn/dietitian.html #DW2026

#Dietitians can aid a patient with #ME to optimise their diet while minimising energy demands and gastrointestinal symptoms. #DietitiansWeek #EndMalnutritionInME

NICE guideline NG206 recognises the nutritional problems people with #ME may face, and the need for dietetic input to prevent malnutrition. #DietitiansWeek #EndMalnutritionInME

Co-morbidities associated with #ME can further compromise nutritional intake. #DietitansWeek #EndMalnutritionInME

#ME can cause diet and nutritional problems which can benefit from dietetic input. Gastrointestinal problems are common at all severities of ME. #DietitiansWeek #EndMalnutritionInME

The cardinal feature of #ME is post-exertional malaise (PEM). PEM can be triggered by shopping and preparing food. In #severeME, PEM can be triggered by just lifting a cup or chewing food. #DietitiansWeek #EndMalnutritionInME

About 25% of #ME patients are housebound or bedbound. There is no cure for #ME, and we do not know how many older people have ME. We do know that many people have had ME for decades. #DietitiansWeek See Helen Baxter's presentation on how #dietitians can help: www.youtube.com/watch?v=buCc...

Digestive problems are very common among people with #ME, across all severities. In #severeME they can lead to malnutrition. We need research into gastrointestinal symptoms in #ME and better clinical care to #EndMalnutritionInME #WDHD2026 #WorldDigestiveDay

Full talk: ‘Visiting severe #MECFS patients – A Compassion in Practice approach’ (2019). Thanks to Hope4MEFibroNI and JoanMcParland for always organising such good conferences. youtu.be/OkG_0G5Pc9w?...

Please sign this petition. Many people with #ME are too till to attend GPs' surgeries, outpatients' appointments, or A&E. #MEAwarenessWeeek petition.parliament.uk/petitions/73...

The 25% ME Group would like to thank all those who help people with #ME. #MEAwarenessWeek

People with #ME need protection from disbelief. Decades of dismissal and trivialisation of the disease has resulted in widespread misunderstanding, neglect, and harm. #MEAwarenessWeek

To help a friend or loved one with #ME, continue to invite them to social events and share news with them, even though they might not be able to join in. Don't let them feel excluded and forgotten. #MEAwarenessWeek

To help a friend with #severeME, send a card showing that you are thinking of them and don't expect a reply. Offer to collect prescriptions, help with shopping, posting letters and parcels. #MEAwarenessWeek

People with #ME need medical care at home wherever possible to avoid the risk of flare up or relapse caused by attending GP's surgeries, clinics, or hospitals. For people with #severeME, leaving home may be impossible under any circumstances. #MEAwarenessWeek

Lots of information on how to prevent life-threatening #malnutrition in patients with #severeME in this presentation by Helen Baxter. #MEAwarenessWeek #EndMalnutritionInME @patientsafetylearning.org @patientsafetywatch.bsky.social www.youtube.com/watch?v=FRx7...

People with #severeME need protection from malnutrition and dehydration. Ensure suitable food and drink is accessible for them at all times. Provide nutritional support such as soft foods, drinking aids, and tube feeding when necessary. #MEAwarenessWeek #EndMalnutritionInME

Help people with #ME by minimising interactions to those that are absolutely necessary. They may need extra time for process information and to make decisions. #MEAwarenessWeek

People with #ME often need assistance with obtaining the support they need, such as accessing social services and applying for benefits. #MEAwarenessWeek

This #MEawarenessDay we are delighted to have an article published in in the Chartered Society of Physiotherapy's magazine "Frontline", which goes out to all chartered physiotherapists in the UK (that's over 67,000!) www.csp.org.uk/frontline/ar...

People with #severeME need protection from stimulation. Noise, light, scented beauty products, and even quiet talking can trigger post-exertional malaise, causing a flare up of symptoms and risking a relapse. Their room may need to be completely dark, scent free, and silent. #MEAwarenessWeek

People with #ME need to be protected from unnecessary travel. Travel can trigger post-exertional malaise which causes a flare-up of symptoms and relapse or crash. #MEAwarenessWeek

People with #ME need: 🔹More support from others. 🔹Fewer demands on their energy. This means reduced hours of work or study, help with housework and childcare, and aids such as wheelchairs and stairlifts. #MEAwarenessWeek

In #ME patients: 1. GI symptoms are common. 2. Intestinal abnormalities have been observed in biomedical studies. 3. Clinical studies suggest impaired gastric emptying and accommodation. 4. Nutritional problems can lead to malnutrition. Research is need to properly investigate these findings.

People with #ME need protection from overexertion. Any activity can trigger post-exertional malaise which can cause a flare up of symptoms and possibly a relapse or crash. Too much exertion can cause a permanent worsening of the disease. #MEAwarenessWeek

There is no effective cure for #ME and little treatment available for symptoms. People with ME are forced to avoid deterioration by carefully controlling their energy expenditure and exposure to harm. #MEAwarenessWeek

For #MEAwarenessWeek 2026 our theme is how friends, loved ones, #careworkers, and #healthcareprofessionals can help people with #ME, particularly those with #severeME.

5-page post-exertional malaise ( #PEM) fact sheet www.s4me.info/docs/PEM_Fac... Headings: -Characteristics of PEM -Symptoms of PEM -Exertion and other PEM triggers -Effects of exertion that are not PEM -Living with PEM -Examples of PEM -Research on PEM -References #MEcfs #CFS #pwME #LongCovid 1/

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...