EndMalnutritioninME
@malnutritionme.bsky.social
Campaign for improvements in medical care for ME patients with gastrointestinal symptoms. http://25megroup.org
Reposted by EndMalnutritioninME
Clague-Baker et al (2023). Home-based testing protocol to measure physiological responses to everyday activities in ME: a feasibility study
This study, funded by the MEA, tested whether we can measure ME/CFS symptoms during normal activities at home.
https://tinyurl.com/p2pd79hu
#MECFS
This study, funded by the MEA, tested whether we can measure ME/CFS symptoms during normal activities at home.
https://tinyurl.com/p2pd79hu
#MECFS
November 5, 2025 at 3:31 PM
Clague-Baker et al (2023). Home-based testing protocol to measure physiological responses to everyday activities in ME: a feasibility study
This study, funded by the MEA, tested whether we can measure ME/CFS symptoms during normal activities at home.
https://tinyurl.com/p2pd79hu
#MECFS
This study, funded by the MEA, tested whether we can measure ME/CFS symptoms during normal activities at home.
https://tinyurl.com/p2pd79hu
#MECFS
Please sign this petition calling on the UK Government to provide more funding for biomedical research into, and education on, #ME if you haven't already done so. The deadline is 30th December 2025.
petition.parliament.uk/petitions/72...
petition.parliament.uk/petitions/72...
Petition: Provide more funding for further biomedical research and education on CFS/ME
We want the government to provide more funding for further biomedical research and education on myalgic encephalomyelitis (ME)/chronic fatigue syndrome. ME Association UK estimates there are currently...
petition.parliament.uk
November 10, 2025 at 10:06 AM
Please sign this petition calling on the UK Government to provide more funding for biomedical research into, and education on, #ME if you haven't already done so. The deadline is 30th December 2025.
petition.parliament.uk/petitions/72...
petition.parliament.uk/petitions/72...
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...
www.malnutritiontaskforce.org.uk/sites/defaul...
www.malnutritiontaskforce.org.uk
November 3, 2025 at 9:41 AM
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...
www.malnutritiontaskforce.org.uk/sites/defaul...
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/...
#EndMalnutritionInME
www.tandfonline.com/doi/10.1080/...
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...
www.tandfonline.com
October 31, 2025 at 10:10 AM
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/...
#EndMalnutritionInME
www.tandfonline.com/doi/10.1080/...
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...
#EndMalnutritionInME
www.meresearch.org.uk/gut-disorder...
www.meresearch.org.uk
October 31, 2025 at 9:53 AM
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...
#EndMalnutritionInME
www.meresearch.org.uk/gut-disorder...
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...
www.jacionline.org/article/S009...
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 ...
www.jacionline.org
October 24, 2025 at 9:26 AM
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...
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.
Our 2025 Big Survey is now open! 🎉
For more information, our FAQs, and to take part, head to our web page: www.actionforme.org.uk/research-campaigns/our-research-work/big-survey/
Thank you for supporting our research💙
🤝in collaboration with
@durhamimh.bsky.social @kacheston.bsky.social
For more information, our FAQs, and to take part, head to our web page: www.actionforme.org.uk/research-campaigns/our-research-work/big-survey/
Thank you for supporting our research💙
🤝in collaboration with
@durhamimh.bsky.social @kacheston.bsky.social
October 15, 2025 at 11:49 AM
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.
Reposted by EndMalnutritioninME
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
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
September 26, 2025 at 11:02 AM
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
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
Reposted by EndMalnutritioninME
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
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
May 12, 2025 at 1:38 PM
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
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
#EndMalnutritionInME
www.mdpi.com/3485610
www.mdpi.com
September 23, 2025 at 12:19 PM
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
#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
#Dietitians can make an enormous difference to the lives of people with ME, particularly those with #severeME.
#EndMalnutritionInME
September 23, 2025 at 12:15 PM
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
#Dietitians can make an enormous difference to the lives of people with ME, particularly those with #severeME.
#EndMalnutritionInME
Reposted by EndMalnutritioninME
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 👇
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 👇
September 23, 2025 at 8:20 AM
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 👇
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...
🔹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
September 17, 2025 at 12:52 PM
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...
🔹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
#EndMalnutritionInME
September 10, 2025 at 9:28 AM
Gastrointestinal symptoms are very common among people with #ME. Clinical investigation and scientific research are needed to characterise and understand these symptoms.
#EndMalnutritionInME
#EndMalnutritionInME
Reposted by EndMalnutritioninME
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
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
August 29, 2025 at 1:10 PM
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
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
Reposted by EndMalnutritioninME
New report from @bapen.bsky.social Patient Network Group on improving services for people living at home with an enteral tube
youtu.be/_NkDzm5FBKI?...
youtu.be/_NkDzm5FBKI?...
Experiences and views of support services for people living at home with an enteral tube
YouTube video by BAPENUK
youtu.be
August 20, 2025 at 8:01 PM
New report from @bapen.bsky.social Patient Network Group on improving services for people living at home with an enteral tube
youtu.be/_NkDzm5FBKI?...
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/...
#dietitians
#EndMalnutritionInME
www.mdpi.com/2227-9032/9/...
www.mdpi.com
August 29, 2025 at 9:20 AM
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/...
#dietitians
#EndMalnutritionInME
www.mdpi.com/2227-9032/9/...
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.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
August 12, 2025 at 10:24 AM
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.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
#SevereMEDay
#EndMalnutritionInME #dietitians
www.malnutritionpathway.co.uk
Managing Adult Malnutrition in the Community | Malnutrition Pathway
www.malnutritionpathway.co.uk
August 8, 2025 at 6:43 PM
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
#SevereMEDay
#EndMalnutritionInME #dietitians
www.malnutritionpathway.co.uk
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...
@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
August 8, 2025 at 6:40 PM
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...
@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/...
#SevereMEDay
#EndMalnutritionInME #HANWeek
www.mdpi.com/2227-9032/9/...
www.mdpi.com
August 8, 2025 at 6:37 PM
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/...
#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
🔹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
August 8, 2025 at 6:34 PM
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
🔹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
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/
#SevereMEDay
25megroup.org/memberships/
Memberships - 25% ME Group
All Membership Options & Benefits Below:
25megroup.org
August 8, 2025 at 1:38 PM
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/
#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
#SevereMEDay
August 8, 2025 at 8:34 AM
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
#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
#SevereMEDay
August 8, 2025 at 8:32 AM
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
#SevereMEDay