EndMalnutritioninME
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malnutritionme.bsky.social
EndMalnutritioninME
@malnutritionme.bsky.social
210 followers 320 following 200 posts
Campaign for improvements in medical care for ME patients with gastrointestinal symptoms. http://25megroup.org
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malnutritionme.bsky.social
How #dietitians and the wider MDT can help people with #ME.
#UKMAW2025
#EndMalnutritionInME
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.
November 19, 2025 at 4:18 PM
malnutritionme.bsky.social
Co-morbidities of #ME can compromise nutritional intake.
#UKMAW2025
#EndMalnutritionInME
Co-morbidities: Irritable Bowel Syndrome; Mast Cell Activation Disorder; Postural Tachycardia Syndome; Fibromyalgia; Gastroparesis.
November 19, 2025 at 9:20 AM
malnutritionme.bsky.social
Post-exertional malaise is the cardinal symptom of #ME.
In people with #severeME, even chewing food can trigger post-exertional malaise.
#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.
November 18, 2025 at 7:10 PM
malnutritionme.bsky.social
There are a number of reasons why people with #ME have difficulties accessing even basic—let alone good—nutrition.
#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.
November 18, 2025 at 9:37 AM
malnutritionme.bsky.social
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
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.
November 17, 2025 at 11:21 AM
malnutritionme.bsky.social
Severe ME Difrifol Cymru has a place in Y Farchnad (The Marketplace), Senedd, Tuesday 15th July. Ask your MS to drop by the stall.
July 10, 2025 at 10:00 AM
malnutritionme.bsky.social
Regardless of support put in place, some patients with #SevereME cannot get adequate hydration or meet their nutritional requirements, and do need tube feeding to avoid life-threatening malnutrition.
#NHWeek #EndMalnutritioninME
To avoid life-threatening malnutrition in very severe ME/CFS, clinicians need to listen to the patient, their family or home care workers and make an urgent referral to a Nutrition Support Team for tube feeding.
March 14, 2024 at 7:59 PM
malnutritionme.bsky.social
Patients with very #SevereME are bedbound and cannot be weighed, or tolerate being hoisted. Other methods can be used to screen for malnutrition.
#NHWeek #EndMalnutritioninME
To screen the bedbound patient for malnutrition, use subjective criteria, look for visual evidence of weight loss, find out about dietary intake over the last 3 to 6 months, find out if the patient has been experiencing problems such as dysphagia, take a mid upper arm measurement: if it is less than 23.5 cm it indicates that the patient is underweight.
March 14, 2024 at 4:07 PM
malnutritionme.bsky.social
Some patients with #SevereME need meals cooked from scratch due to food intolerances, and some need to be fed. Social care visits need adequate time for this.
#NHWeek #EndMalnutritioninME
The support needed from home care workers to prevent malnutrition includes time to prepare a hot meal using fresh ingredients, as many people with severe ME/CFS have dietary intolerances, and home care workers need to provide support with taking medication.
March 13, 2024 at 8:04 PM
malnutritionme.bsky.social
Some people with #ME are cared for by family who take great effort to give sufficient nutrition and hydration, providing regular small meals, pureeing food, and feeding the patient. #NHWeek #EndMalnutritioninME
The role of the family member providing care: they have more time than home care workers to help the person to eat and drink, but they are worried what will happen to their loved one when they are no longer able to provide this level of support.
March 12, 2024 at 11:39 AM
malnutritionme.bsky.social
The NICE guideline (NG206) includes dietary management and strategies for people with #ME.
#NHWeek #EndMalnutritioninME
The NICE guideline for ME/CFS states the following: "Work with the person and their family or carers to find ways of minimising complication caused by gastrointestinal symptoms, such as nausea, changes to appetite, swallowing difficulties, sore throat, or difficulties with buying, preparing, and eating food."
March 11, 2024 at 10:21 AM
malnutritionme.bsky.social
#ME symptoms can lead to nutritional problems, especially in #SevereME.
#NHWeek
#EndMalnutritioninME
Symptoms of severe ME/CFS that could lead to malnutrition include gastrointestinal difficulties, and inability or reduced ability to swallow, inability to eat and digest food easily, and need for support with hydration and nutrition. People with severe ME may need tube feeding.
March 11, 2024 at 10:16 AM