EndMalnutritioninME
@malnutritionme.bsky.social
Campaign for improvements in medical care for ME patients with gastrointestinal symptoms. http://25megroup.org
Viruses can persist and reactivate in mucosal tissue (e.g. in the gastrointestinal tract) long after initial infection.
Research into the role of such viral reservoirs in #ME could help to understand and treat the disease.
www.mdpi.com/3595296
Research into the role of such viral reservoirs in #ME could help to understand and treat the disease.
www.mdpi.com/3595296
www.mdpi.com
November 26, 2025 at 9:30 AM
Viruses can persist and reactivate in mucosal tissue (e.g. in the gastrointestinal tract) long after initial infection.
Research into the role of such viral reservoirs in #ME could help to understand and treat the disease.
www.mdpi.com/3595296
Research into the role of such viral reservoirs in #ME could help to understand and treat the disease.
www.mdpi.com/3595296
These infosheets may be helpful for people with #ME having nutritional problems.
Dysphagia affects hydration & nutrition. In addition to our professional fact sheet we also have free downloadable patient info sheet on swallowing difficulties: bit.ly/4idulrN plus practical tips on managing other symptoms that affect eating & drinking on our website: bit.ly/49ugjzv #MAW2025
November 21, 2025 at 2:19 PM
These infosheets may be helpful for people with #ME having nutritional problems.
Reposted by EndMalnutritioninME
Remember those groups who are particularly at risk of malnutrition - especially those with chronic conditions, frailty, neuro-disability or undergoing rehab. Use every interaction to screen, support & signpost. www.malnutritionpathway.co.uk
#MAW2025 - Every Contact Counts
#MAW2025 - Every Contact Counts
November 21, 2025 at 11:49 AM
Remember those groups who are particularly at risk of malnutrition - especially those with chronic conditions, frailty, neuro-disability or undergoing rehab. Use every interaction to screen, support & signpost. www.malnutritionpathway.co.uk
#MAW2025 - Every Contact Counts
#MAW2025 - Every Contact Counts
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
#UKMAW2025
#EndMalnutritionInME
November 21, 2025 at 2:15 PM
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
#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
#Dietitians can make an enormous difference to the lives of people with ME, particularly those with #severeME.
#UKMAW2025
#EndMalnutritionInME
November 21, 2025 at 8:58 AM
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
#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/...
#UKMAW2025
#EndMalnutritionInME
www.mdpi.com/2227-9032/9/...
www.mdpi.com
November 21, 2025 at 8:52 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.
#UKMAW2025
#EndMalnutritionInME
www.mdpi.com/2227-9032/9/...
#UKMAW2025
#EndMalnutritionInME
www.mdpi.com/2227-9032/9/...
Carers have the right to be identified as a carer on the GP practice's medical records.
www.carersuk.org/help-and-adv...
#ME
#CarersRightsDay
www.carersuk.org/help-and-adv...
#ME
#CarersRightsDay
Talking to your GP | Carers UK
www.carersuk.org
November 20, 2025 at 4:24 PM
Carers have the right to be identified as a carer on the GP practice's medical records.
www.carersuk.org/help-and-adv...
#ME
#CarersRightsDay
www.carersuk.org/help-and-adv...
#ME
#CarersRightsDay
Carers have the right to request a carer's assessment from their local authority. This can determine what help and support can be provided to the carer. This is separate from a dependant's assessment.
#ME
#CarersRightsDay
www.nhs.uk/social-care-...
#ME
#CarersRightsDay
www.nhs.uk/social-care-...
Carer's assessments - Social care and support guide
See if you can get support from your council, such as extra money or a break from caring.
www.nhs.uk
November 20, 2025 at 2:33 PM
Carers have the right to request a carer's assessment from their local authority. This can determine what help and support can be provided to the carer. This is separate from a dependant's assessment.
#ME
#CarersRightsDay
www.nhs.uk/social-care-...
#ME
#CarersRightsDay
www.nhs.uk/social-care-...
Carers who are employed have the right to request up to a week per annum of unpaid leave to give or arrange care for a dependant.
#ME
#CarersRightsDay
www.gov.uk/carers-leave
#ME
#CarersRightsDay
www.gov.uk/carers-leave
Unpaid carer’s leave
Employer and employee guide to unpaid carer’s leave - who can take it, how long for, when can employers postpone or delay.
www.gov.uk
November 20, 2025 at 10:48 AM
Carers who are employed have the right to request up to a week per annum of unpaid leave to give or arrange care for a dependant.
#ME
#CarersRightsDay
www.gov.uk/carers-leave
#ME
#CarersRightsDay
www.gov.uk/carers-leave
Carers who are employed have the right to request flexible working arrangements, such as changing their hours of work or where they work.
#ME
#CarersRightsDay
www.gov.uk/flexible-wor...
#ME
#CarersRightsDay
www.gov.uk/flexible-wor...
Flexible working
Requesting flexible working, how to make an application, what business reasons an employer can give to reject an application and how to appeal.
www.gov.uk
November 20, 2025 at 8:52 AM
Carers who are employed have the right to request flexible working arrangements, such as changing their hours of work or where they work.
#ME
#CarersRightsDay
www.gov.uk/flexible-wor...
#ME
#CarersRightsDay
www.gov.uk/flexible-wor...
Many people with #severeME are cared for by family members or friends. On #CarersRightsDay we highlight the rights of these unpaid carers.
November 20, 2025 at 8:46 AM
Many people with #severeME are cared for by family members or friends. On #CarersRightsDay we highlight the rights of these unpaid carers.
Tessa Munt MP on #severeME:
"The risk of death—specifically from malnutrition—is real and ongoing."
#EndMalnutritionInME
#UKMAW2025
"The risk of death—specifically from malnutrition—is real and ongoing."
#EndMalnutritionInME
#UKMAW2025
A massive thank you to @tessamunt.bsky.social for tabling this debate on #ME - for listening to patients & advocates and representing the community so well.
Also to @joplatt.bsky.social and every other MP who showed up and talked so compassionately about their constituents.
youtu.be/wZFEUnjWgOA?...
Also to @joplatt.bsky.social and every other MP who showed up and talked so compassionately about their constituents.
youtu.be/wZFEUnjWgOA?...
Westminster Hall Debate on Support for People with ME/CFS - November 2025
YouTube video by Broken Battery
youtu.be
November 19, 2025 at 8:43 PM
Tessa Munt MP on #severeME:
"The risk of death—specifically from malnutrition—is real and ongoing."
#EndMalnutritionInME
#UKMAW2025
"The risk of death—specifically from malnutrition—is real and ongoing."
#EndMalnutritionInME
#UKMAW2025
Reposted by EndMalnutritioninME
#ChallengesTuesday & Solutions
Small changes can boost the nutritional content of everyday foods.
Chris made these three changes and added 1089kcal and 59.3g protein to help halt their weight loss.
#MAW2025 #MKUH
Small changes can boost the nutritional content of everyday foods.
Chris made these three changes and added 1089kcal and 59.3g protein to help halt their weight loss.
#MAW2025 #MKUH
November 18, 2025 at 8:12 AM
#ChallengesTuesday & Solutions
Small changes can boost the nutritional content of everyday foods.
Chris made these three changes and added 1089kcal and 59.3g protein to help halt their weight loss.
#MAW2025 #MKUH
Small changes can boost the nutritional content of everyday foods.
Chris made these three changes and added 1089kcal and 59.3g protein to help halt their weight loss.
#MAW2025 #MKUH
November 19, 2025 at 4:18 PM
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
#UKMAW2025
#EndMalnutritionInMe
November 19, 2025 at 12:53 PM
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
#UKMAW2025
#EndMalnutritionInMe
November 19, 2025 at 9:20 AM
Reposted by EndMalnutritioninME
🚨New survey alert 🚨
The experiences of healthcare professionals living with Long COVID (with PEM) and/or ME
All information can be found on the landing page here.
www.physiosforme.com/hcpwithmesur...
The experiences of healthcare professionals living with Long COVID (with PEM) and/or ME
All information can be found on the landing page here.
www.physiosforme.com/hcpwithmesur...
hcps with ME survey | Physiosforme
www.physiosforme.com
November 18, 2025 at 7:02 PM
🚨New survey alert 🚨
The experiences of healthcare professionals living with Long COVID (with PEM) and/or ME
All information can be found on the landing page here.
www.physiosforme.com/hcpwithmesur...
The experiences of healthcare professionals living with Long COVID (with PEM) and/or ME
All information can be found on the landing page here.
www.physiosforme.com/hcpwithmesur...
Post-exertional malaise is the cardinal symptom of #ME.
In people with #severeME, even chewing food can trigger post-exertional malaise.
#UKMAW2025
#EndMalnutritionInME
In people with #severeME, even chewing food can trigger post-exertional malaise.
#UKMAW2025
#EndMalnutritionInME
November 18, 2025 at 7:10 PM
Post-exertional malaise is the cardinal symptom of #ME.
In people with #severeME, even chewing food can trigger post-exertional malaise.
#UKMAW2025
#EndMalnutritionInME
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
For those with #severeME, even holding cutlery, chewing, and swallowing may be impossible.
#UKMAW2025
#EndMalnutritionInME
November 18, 2025 at 2:55 PM
#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
For those with #severeME, even holding cutlery, chewing, and swallowing may be impossible.
#UKMAW2025
#EndMalnutritionInME
There are a number of reasons why people with #ME have difficulties accessing even basic—let alone good—nutrition.
#UKMAW2025
#EndMalnutritionInME
#UKMAW2025
#EndMalnutritionInME
November 18, 2025 at 9:37 AM
There are a number of reasons why people with #ME have difficulties accessing even basic—let alone good—nutrition.
#UKMAW2025
#EndMalnutritionInME
#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...
#EndMalnutritionInME
www.malnutritiontaskforce.org.uk/ukmaw2025-le...
www.malnutritiontaskforce.org.uk
November 17, 2025 at 3:03 PM
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...
#EndMalnutritionInME
www.malnutritiontaskforce.org.uk/ukmaw2025-le...
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
#UKMAW2025
#EndMalnutritionInME
November 17, 2025 at 11:21 AM
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
#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
#UKMAW2025
#EndMalnutritionInME
November 17, 2025 at 9:40 AM
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
#UKMAW2025
#EndMalnutritionInME
Malnutrition screening is quick and simple - helping teams spot risk and tailor nutrition care plans. It's important to remember that screening should be repeated, especially for those identified as at risk or moving between care settings.
Help us spread the word this #UKMAW2025
Help us spread the word this #UKMAW2025
November 17, 2025 at 9:36 AM
Reposted by EndMalnutritioninME
Today marks the beginning of Malnutrition Awareness Week #UKMAW2025 - the focus is on screening which can begin with a simple conversation. Ask about appetite, weight loss, and eating habits. Use our conversation guide to help: bit.ly/4qSHLNL
bit.ly
November 17, 2025 at 7:58 AM
Today marks the beginning of Malnutrition Awareness Week #UKMAW2025 - the focus is on screening which can begin with a simple conversation. Ask about appetite, weight loss, and eating habits. Use our conversation guide to help: bit.ly/4qSHLNL