EndMalnutritioninME
@malnutritionme.bsky.social
Campaign for improvements in medical care for ME patients with gastrointestinal symptoms. http://25megroup.org
Webinar today at 20:00 GMT by the Brain Inflammation Collaborative.
Discover, unhide® Innovate - Accelerate Research for Complex Chronic Illnesses.
Covering patient-centred research into #ME and related illnesses.
api.neonemails.com/emails/conte...
Discover, unhide® Innovate - Accelerate Research for Complex Chronic Illnesses.
Covering patient-centred research into #ME and related illnesses.
api.neonemails.com/emails/conte...
api.neonemails.com
December 2, 2025 at 11:02 AM
Webinar today at 20:00 GMT by the Brain Inflammation Collaborative.
Discover, unhide® Innovate - Accelerate Research for Complex Chronic Illnesses.
Covering patient-centred research into #ME and related illnesses.
api.neonemails.com/emails/conte...
Discover, unhide® Innovate - Accelerate Research for Complex Chronic Illnesses.
Covering patient-centred research into #ME and related illnesses.
api.neonemails.com/emails/conte...
Attending a clinic can cause post-exertional malaise in #ME patients, but reasonable adjustments can be made to help - for example, appointments by telephone/video, or low sensory environments and facilities to lie down in the clinic.
#EndMalnutritionInME
#EndMalnutritionInME
December 1, 2025 at 9:21 AM
Attending a clinic can cause post-exertional malaise in #ME patients, but reasonable adjustments can be made to help - for example, appointments by telephone/video, or low sensory environments and facilities to lie down in the clinic.
#EndMalnutritionInME
#EndMalnutritionInME
Carer’s Allowance overpayments: a long overdue step forward, many questions still to answer
This blog sets out what has been announced; why it is important; and what we still need to see next: https://meassociation.org.uk/4jmp
#pwME #CarersAllowance
This blog sets out what has been announced; why it is important; and what we still need to see next: https://meassociation.org.uk/4jmp
#pwME #CarersAllowance
Carer’s Allowance overpayments: a long overdue step forward, many questions still to answer - The ME Association
The government has finally published the Sayce review into Carer’s […]
meassociation.org.uk
December 1, 2025 at 9:19 AM
Parliamentary Question about preventing malnutrition in people with severe ME
Read the full question from Baroness Scott of Needham Market and the response on the blog: https://meassociation.org.uk/7icb
#SevereME #pwME #MECFS
Read the full question from Baroness Scott of Needham Market and the response on the blog: https://meassociation.org.uk/7icb
#SevereME #pwME #MECFS
Parliamentary Question about preventing malnutrition in people with severe ME - The ME Association
Photo of Baroness Scott of Needham Market and Baroness Merron […]
meassociation.org.uk
December 1, 2025 at 9:19 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
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...