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Reposted by EndMalnutritioninME

ME Association @meassociation.org.uk · 16d

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

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”

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Royal College of Anaesthetists @rcoanews.bsky.social · May 12

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

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

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EndMalnutritioninME @malnutritionme.bsky.social · 19d

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

www.mdpi.com

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EndMalnutritioninME @malnutritionme.bsky.social · 19d

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

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Reposted by EndMalnutritioninME

ThereForME @thereforme.bsky.social · 19d

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 👇

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”

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EndMalnutritioninME @malnutritionme.bsky.social · 25d

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...

meassociation.org.uk

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EndMalnutritioninME @malnutritionme.bsky.social · Sep 10

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

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ME Association @meassociation.org.uk · Aug 29

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

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Dan Rogers @leicdan.bsky.social · Aug 20

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

youtu.be/_NkDzm5FBKI?...

Experiences and views of support services for people living at home with an enteral tube

YouTube video by BAPENUK

youtu.be

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EndMalnutritioninME @malnutritionme.bsky.social · Aug 29

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/...

www.mdpi.com

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EndMalnutritioninME @malnutritionme.bsky.social · Aug 12

The survey can be completed online, or you can request a pdf copy from [email protected]
It is open until 30th September 2025

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EndMalnutritioninME @malnutritionme.bsky.social · Aug 12

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

BACME - British Association of Clinicians in ME/CFS

Welcome to BACME - A multidisciplinary organisation for UK professionals to deliver high quality care to people living with ME/CFS.

bacme.info

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EndMalnutritioninME @malnutritionme.bsky.social · Aug 8

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

Managing Adult Malnutrition in the Community | Malnutrition Pathway

www.malnutritionpathway.co.uk

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EndMalnutritioninME @malnutritionme.bsky.social · Aug 8

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...

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

www.bapen.org.uk

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EndMalnutritioninME @malnutritionme.bsky.social · Aug 8

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/...

www.mdpi.com

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EndMalnutritioninME @malnutritionme.bsky.social · Aug 8

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

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EndMalnutritioninME @malnutritionme.bsky.social · Aug 8

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/

Memberships - 25% ME Group

All Membership Options & Benefits Below:

25megroup.org

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EndMalnutritioninME @malnutritionme.bsky.social · Aug 8

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

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EndMalnutritioninME @malnutritionme.bsky.social · Aug 8

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

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#MEAction Network @meactnet.bsky.social · Aug 4

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.

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ME Association @meassociation.org.uk · Aug 7

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."

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 […]

tinyurl.com

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EndMalnutritioninME @malnutritionme.bsky.social · Aug 7

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

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EndMalnutritioninME @malnutritionme.bsky.social · Aug 7

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

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EndMalnutritioninME @malnutritionme.bsky.social · Aug 7

"Health and social care organisations should ensure that people with ME/CFS can use their services by adapting the timing, length and frequency of all appointments to the person's needs."
www.nice.org.uk/guidance/ng2...

Recommendations | Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management | Guidance | NICE

www.nice.org.uk

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EndMalnutritioninME @malnutritionme.bsky.social · Aug 7

NICE NG206 section 1.8.1 and 1.8.2 provides guidance on this.
Are you a member of The 25% ME Group? If so, you may be able to get help with this. If not you can join here: 25megroup.org/memberships/

Memberships - 25% ME Group

All Membership Options & Benefits Below:

25megroup.org

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