EndMalnutritioninME

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...

Clinical investigation is needed into impaired gastric motility in ME patients.
@meresearchuk.bsky.social @worldgastroorg.bsky.social @britsocgastro.bsky.social @stmarkshospital.bsky.social @leicdan.bsky.social

Gastric dysmotility and gastrointestinal symptoms in myalgic encephalomyelitis/chronic fatigue syndrome Gastrointestinal symptoms are common in ME/CFS, but there is a knowledge gap in the literature concerning gastrointestinal motility features and detailed symptom description.In this study, we aimed...

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/...

@worldgastroorg.bsky.social @britsocgastro.bsky.social @stmarkshospital.bsky.social @leicdan.bsky.social

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...

Mast cell activation syndrome: Current understanding and research needs Mast cell activation syndrome (MCAS) is a term applied to several clinical entities that have gained increased attention from patients and medical providers. Although several descriptive publications ...

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.

IMAGE DESCRIPTION: Photo of a woman writing on a postit note, in front of a wall covered in postit notes. Heading - We asked visitors to share how the ‘Lives You Cannot Live’ exhibition made them feel. Photos by Jeremy Jeffs, Presented by the ME Association

IMAGE DESCRIPTION: Photo of peoples backs as they look at art on the walls: “Overwhelmed but also somewhat relieved to see my dad represented in so many other people”

IMAGE DESCRIPTION: Photo of peoples backs as they look at art on the walls: “Grateful to have someone bring to life my illness + others to see”

IMAGE DESCRIPTION: Photo of peoples backs as they look at art on the walls: “Humbled, emotional, reflective”

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

Patient contributor Kevin Coyne at home in his garden. He is peering out from between two pink flowers with a cheerful grin.

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

Speech bubble with “What would an NHS service for very severe ME look like?” At the bottom of the image: “Perspectives from carers & clinicians. #ThereForME”

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...

Gastrointestinal symptoms are very common among people with #ME. Clinical investigation and scientific research are needed to characterise and understand these symptoms.
#EndMalnutritionInME

IMAGE DESCRIPTION: Cartoon 'G' followed by 'is for Gastroparesis'. Image of a face looking sick. MEA logo bottom right.

IMAGE DESCRIPTION: Smaller version of pervious image. Wording reads: Gastroparesis refers to the slow emptying of the stomach, which can result in feeling ‘full’ more quickly, bloating, nausea, and heartburn. Some people with ME/CFS experience gastroparesis, which has been linked to nutritional deficiencies, including vitamins B12 and D. MEA logo bottom right.

G is for Gastroparesis. 

For more info on gastroparesis, visit: https://meassociation.org.uk/medical-matters/items/what-is-gastroparesis/

For more general advice on diet & nutrition, download our free booklet: https://meassociation.org.uk/curr

#pwME #MECFS #Gastroparesis #Bloating #Nausea

YouTube video by BAPENUK Experiences and views of support services for people living at home with an enteral tube

New report from @bapen.bsky.social Patient Network Group on improving services for people living at home with an enteral tube

youtu.be/_NkDzm5FBKI?...

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.
#dietitians
#EndMalnutritionInME
www.mdpi.com/2227-9032/9/...

The survey can be completed online, or you can request a pdf copy from info@bacme.info
It is open until 30th September 2025

People with #ME, carers, and healthcare professionals in the UK with experience of tube feeding are invited to complete the ME/CFS Tube Feeding Survey for BACME.
bacme.info

#EndMalnutritionInME

To identify and manage malnutrition in adults with severe #ME, use the Malnutrition Pathway. @mnpathway.bsky.social @bapen.bsky.social
#SevereMEDay
#EndMalnutritionInME #dietitians
www.malnutritionpathway.co.uk

Introducing ‘MUST’ | BAPEN The ‘Malnutrition Universal Screening Tool’ (‘MUST’) was developed by the Malnutrition Advisory Group, a standing committee of BAPEN and it has been reviewed re

It is important to screen people with severe #ME who are at risk of malnutrition using a validated screening tool such as MUST.

@BAPENUK @mnpathway.bsky.social
#SevereMEDay
#EndMalnutritionInME #HANWeek
www.bapen.org.uk/must-and-sel...

In severe #ME, sometimes oral intake cannot meet nutritional needs. Tube feeding and intravenous saline may be necessary. These can help conserve evergy as well as prevent malnutrition and dehydration.
#SevereMEDay
#EndMalnutritionInME #HANWeek
www.mdpi.com/2227-9032/9/...

To help someone with severe #ME with eating and drinking:

🔹Ensure food and drink are always within reach
🔹Provide foods that are nutrient dense and easily accessed
🔹Use lightweight tableware and cutlery and a non-spill bottle with a straw.

#SevereMEDay
#EndMalnutritionInME

Memberships - 25% ME Group All Membership Options & Benefits Below:

When a person with #ME joins The 25% ME Group, their carer's details can be included on the contact list. This will enable them to get in touch with other #carers.
#SevereMEDay
25megroup.org/memberships/

We recognise that people with #ME and their carers have, through dealing with such a complex disease, gained rare and valuable lived experience which health and social care sectors should utilise.
#SevereMEDay

Caring for someone with #ME can be difficult because of the nature of the disease and the lack of understanding and support by some professionals and the wider public.
#SevereMEDay

Muted photo with two rocks with a word on them- pause and reflect. Text in top corner: "Let us pause together before Severe ME Day." #MEAction logo in bottom corner.

In August, we especially take time to honor the 25% living with the most severe form of this disease & remember those who have lost.

August 8th is the Severe Myalgic Encephalomyelitis (ME) Day of Understanding and Remembrance, started by the 25% ME Group as a response to the death of Sophia Mirza.

New Clinician Resource Guide Published for Severe ME Day 2025 - World ME Alliance Ahead of this Severe ME Day — August 8th — the World ME Alliance is proud to launch a vital new publication: Supporting People with Severe and Very Severe ME/CFS: A Resource Guide for Clinicians All over the world, Severe ME patients struggle to get the medical care they need. Too often they are recommended […]

World ME Alliance publish new resource - Supporting People with Severe and Very Severe ME/CFS

"Through this concise and practical document our goal is to help give voice and agency back to those who are often left unseen and underserved by healthcare systems."

People with severe #ME may need food to be pureed or in small pieces to avoid the need for chewing. Some may eat little and often, up to six meals a day. Others may only be able to eat one or two meals per day.
#SevereMEWeek
#EndMalnutritionInME

Some people with severe #ME need to be fed because they are unable to prepare meals, hold cutlery, or cut up food.
#SevereMEWeek
#EndMalnutritionInME
@bapen.bsky.social @mnpathway.bsky.social