EndMalnutritioninME
@malnutritionme.bsky.social
Campaign for improvements in medical care for ME patients with gastrointestinal symptoms. http://25megroup.org
Helen Baxter, Patient Advocate and PPI Representative:
"These results greatly enhance our understanding of the biology of ME and present opportunities for drug repurposing which affords hope to the millions of people living with #ME and #longCOVID around the world." @precisionlife.bsky.social
"These results greatly enhance our understanding of the biology of ME and present opportunities for drug repurposing which affords hope to the millions of people living with #ME and #longCOVID around the world." @precisionlife.bsky.social
The most detailed genetic analysis of myalgic encephalomyelitis ever conducted
Groundbreaking ME study identifies 250+ genes, links with long COVID, and uncovers new drug repurposing opportunities to advance targeted treatments
precisionlife.com
December 4, 2025 at 9:41 AM
Helen Baxter, Patient Advocate and PPI Representative:
"These results greatly enhance our understanding of the biology of ME and present opportunities for drug repurposing which affords hope to the millions of people living with #ME and #longCOVID around the world." @precisionlife.bsky.social
"These results greatly enhance our understanding of the biology of ME and present opportunities for drug repurposing which affords hope to the millions of people living with #ME and #longCOVID around the world." @precisionlife.bsky.social
Reposted by EndMalnutritioninME
New myalgic encephalomyelitis (ME, also known as ME/CFS) genetics study reveals 250+ core genes, shared mechanisms with long COVID, and dozens of drug repurposing opportunities. This would not have been possible without the thousands of people with ME who contributed their data.
Thank you.
Thank you.
December 4, 2025 at 8:00 AM
New myalgic encephalomyelitis (ME, also known as ME/CFS) genetics study reveals 250+ core genes, shared mechanisms with long COVID, and dozens of drug repurposing opportunities. This would not have been possible without the thousands of people with ME who contributed their data.
Thank you.
Thank you.
LOCOME Project: Major #ME and #LongCOVID Genetics Findings Announced. Today we are excited to share landmark new findings from the LOCOME project.
www.medrxiv.org/content/10.6...
@precisionlife.bsky.social
www.medrxiv.org/content/10.6...
@precisionlife.bsky.social
Identification of Novel Reproducible Combinatorial Genetic Risk Factors for Myalgic Encephalomyelitis in the DecodeME Patient Cohort and Commonalities with Long COVID
Background: Myalgic encephalomyelitis (also known as ME/CFS or simply ME) has severely impacted the lives of tens of millions of people globally, but the disease currently has no accurate diagnostic t...
www.medrxiv.org
December 4, 2025 at 9:14 AM
LOCOME Project: Major #ME and #LongCOVID Genetics Findings Announced. Today we are excited to share landmark new findings from the LOCOME project.
www.medrxiv.org/content/10.6...
@precisionlife.bsky.social
www.medrxiv.org/content/10.6...
@precisionlife.bsky.social
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