#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
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
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...
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
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
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
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
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/...
Tessa Munt MP on #severeME:
"The risk of death—specifically from malnutrition—is real and ongoing."
#EndMalnutritionInME
#UKMAW2025
The Role of the Dietitian and wider MDT: Opitimise diet whilst minimising energy demands and gastrointestinal symptoms; Further assessment of sensitivities and intolerances including histamine intolerance; Minimise gastrointestinal symptoms; Work with and support the family to improve nutritional intake; Easy to eat foods; Explore aids and adaptations that can assist with nutritional intake.
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: Irritable Bowel Syndrome; Mast Cell Activation Disorder; Postural Tachycardia Syndome; Fibromyalgia; Gastroparesis.
Co-morbidities of #ME can compromise nutritional intake.
#UKMAW2025
#EndMalnutritionInME
Post Exertional Malaise: The worsening of symptoms associated with minimal amounts of activity; Energy expenditure can be physical, cognitive, or emotional; Impacts nutrition and hydration.
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
Why people with ME/CFS may struggle to access nutrition: Practical difficulty accessing food-not able to shop etc; Difficulty preparing food; Difficulty chewing and swallowing; Hypersensitivity to taste/smell and texture of food; Food intolerances; Gastrointestinal problems such as abdominal pain, constipation, nausea; Disturbed sleep patterns.
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...
Very severe ME/CFS and nutrition: Some people cannot meet nutrition and hydration needs; May be due to debility/dysphagia; Early intervention tube feeding has been shown to be beneficial.
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
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/...
