EndMalnutritioninME
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malnutritionme.bsky.social
EndMalnutritioninME
@malnutritionme.bsky.social
260 followers 390 following 290 posts
Campaign for improvements in medical care for ME patients with gastrointestinal symptoms. http://25megroup.org
Posts Replies Media Videos
malnutritionme.bsky.social
People with #ME are at risk of relapse after admission to hospital. Help them by:
🔹Not altering their daily medication and supplement intake.
🔹Reducing sensory stimuli and contact to the bare minimum.
🔹Providing artificial nutrition at an early stage.
#WorldPatientSafetyDay
Hospital Support Pack - The ME Association
This pack was designed to help you explain the care […]
meassociation.org.uk
September 17, 2026 at 12:49 PM
malnutritionme.bsky.social
The Severe ME Inquiry Report found that "People with severe and very severe #ME are exposed to clinical risks because existing systems often fail to respond appropriately to the realities of the illness."

#WorldPatientSafetyDay
#SevereME

25megroup.org/wp-content/u...
25megroup.org
September 17, 2026 at 8:53 AM
malnutritionme.bsky.social
Tube feeding in #ME may require adaptations to standard feeding protocols, but it can improve quality of life by reducing symptoms and energy demands, and it is life saving for some people with ME.
#Dietitians
#EndMalnutritionInME
bacme.info/bacme-tube-f...
bacme.info
September 11, 2026 at 9:19 AM
malnutritionme.bsky.social
September 9, 2026 at 1:47 PM
malnutritionme.bsky.social
The importance of early intervention for nutritional problems in #ME is highlighted in the BACME Tube Feeding Survey.

Many respondents deteriorated over a prolonged period before receiving adequate help with nutrition.
#EndMalnutritionInME

bacme.info/bacme-tube-f...
bacme.info
September 9, 2026 at 8:04 AM
malnutritionme.bsky.social
We can #EndMalnutritioninME with:
🔹Social care support
🔹Early recognition of nutrition and hydration problems
🔹Early intervention
🔹Artificial feeding
🔹Home Enteral Nutrition Service #Dietitians
September 7, 2026 at 8:34 AM
malnutritionme.bsky.social
Some people with #severeME experience dysphagia.
#EndMalnutritionInME
mnpathway.bsky.social The Malnutrition Pathway @mnpathway.bsky.social · 20d
Our September Resource of the Month is our Dysphagia Fact Sheet. Dysphagia affects safety, nutritional intake and quality of life, and early recognition is essential. Download the fact sheet to support best practice in identifying and managing dysphagia in the community - bit.ly/4cgrZGQ
September 2, 2026 at 8:36 AM
malnutritionme.bsky.social
Reduced gut microbiome diversity and increased metabolites related to tryptophan metabolism were found in people with #ME vs controls in this study.

Alterations in tryptophan metabolism may contribute to the symptoms of the disease, e.g. by activation of mast cells.

#EndMalnutritionInME
August 18, 2026 at 8:59 AM
Reposted by EndMalnutritioninME
tomkindlon.bsky.social
ME Research UK:

An article entitled “Guidance on Home-Based Care for People with Severe ME/CFS: A Transdisciplinary Expert Statement” has been published.

Read more: tinyurl.com/yc264wbm

#severeme #verysevereme #severemecfs #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
Guidance on Home-Based Care for People with Severe ME/CFS: A jransdisciplinary Expert Statement "The guide describes how to adapt key dimensions of care—from nutrition and personal hygiene to communication and managing emotional stress—to disease-specific exertion thresholds. Additionally, it outlines requirements for the caregiving relationship and the planning of home visits and discusses the application of palliative care principles." 4111■, I 1 13 INFORM. INFLUENCE. INVEST. RESEARCH UK SCO36942 Hermisson et al. Wiener Medizinische Wochenschrift (2026)
August 17, 2026 at 10:05 PM
malnutritionme.bsky.social
The Severe ME Inquiry highlighted the misinterpretation of severe #ME symptoms due to lack of clinical understanding.

Even swallowing difficulties have been misinterpreted and untreated, leading to life-threatening malnutrition.

#EndMalnutritionInME
25megroup.org/wp-content/u...
25megroup.org
August 17, 2026 at 8:45 AM
Reposted by EndMalnutritioninME
investinmeresearch.bsky.social
You can raise free funds for IiMER simply by shopping online. Join by Sunday 23 Aug, you can help IiMER WIN a £5,000 donation. IiMER will get a FREE entry each time a new supporter signs up! - this would really boost our fundraising:

www.easyfundraising.org.uk/causes/inves...
August 16, 2026 at 12:30 PM
Reposted by EndMalnutritioninME
actionforme.bsky.social
A huge thank you to all those who provided evidence and shared their experience for the inquiry, and to @tessamunt.bsky.social, the APPG on ME, and the 25% ME Group for their support 🙏
August 7, 2026 at 8:45 AM
malnutritionme.bsky.social
The Severe ME Inquiry Report sets out recommendations for immediate patient safety actions and priority system reforms. The 25% ME Group and @actionforme.bsky.social will work to ensure that they are acted on.

#patientsafety #SevereMEDay #ME

25megroup.org/wp-content/u...
25megroup.org
August 8, 2026 at 5:54 PM
malnutritionme.bsky.social
The Severe ME Inquiry: "Evidence described people with severe and very severe #ME becoming unable to chew, swallow, digest or tolerate food, yet struggling to get timely specialist dietary support or enteral (tube) feeding."

#SevereMEDay
#EndMalnutritionInME
25megroup.org/wp-content/u...
25megroup.org
August 8, 2026 at 3:09 PM
malnutritionme.bsky.social
The Severe ME Inquiry finds that among #ME patients, the more ill you become, the less care you receive.
#SevereMEDay #ME

25megroup.org/wp-content/u...
25megroup.org
August 8, 2026 at 2:13 PM
malnutritionme.bsky.social
The Severe ME Inquiry Report from the 25% ME Group and Action for ME paints a picture of unmet need, exclusion, and harm from healthcare, social care, and education services.
#SevereMEDay #ME
25megroup.org/wp-content/u...
25megroup.org
August 8, 2026 at 9:44 AM
malnutritionme.bsky.social
The 25% ME Group and Action for ME @actionforme.bsky.social have released a report on severe ME drawing on the experience of people with #ME, their carers, and professionals.
25megroup.org/wp-content/u...

#SevereMEDay
25megroup.org
August 8, 2026 at 7:57 AM
Reposted by EndMalnutritioninME
bapen.bsky.social
✅ What support should people receive after going home with a feeding tube?

The PNG SIG has today launched a new set of checklists, designed for:

• Patients & carers
• Healthcare professionals
• Homecare providers

Explore the new resource here: bit.ly/4wW0ytS
August 7, 2026 at 8:23 AM
Reposted by EndMalnutritioninME
thereforme.bsky.social
You may have noticed there's a new PM in town!

Today's post from our co-founder @GoreLloyd on our #ThereForME blog outlines a problem his government will inherit when it comes to ME.

Houston, we have a data problem.

Link in next post 👇
"Data on ME matters because numbers drive resources and political attention. If the number under-represents the scale of the issue, the response will be insufficient." - Emma Gore-Lloyd, #ThereForME. New #ThereForME Substack post
July 21, 2026 at 8:26 AM
Reposted by EndMalnutritioninME
tomkindlon.bsky.social
New US study

Gastrointestinal Symptoms Correlate with Core Clinical Features and Systemic Inflammation in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

link.springer.com/article/10.1...

Gliadin is part of gluten suggesting gluten avoidance may have a benefit

#MEcfs #Gluten
Abstract Background: Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a debilitating multisystem illness marked by fatigue, cognitive impairment, and post-exertional malaise. Gastrointestinal (GI) symptoms are frequently reported, yet their relationship to central features of the illness and biological correlates remains poorly understood. Objectives: We aimed to characterize GI symptom burden in ME/CFS and evaluate its associations with core clinical features and specific immune and inflammatory markers, with attention to potential gut-related contributions to disease expression. Methods: GI symptoms and 49 additional symptoms across nine domains were assessed in 116 ME/CFS patients and 80 matched controls. Plasma C-reactive protein (CRP) and antibodies against dietary and microbial antigens were measured as indicators of systemic inflammation and putative gut-derived antigen exposure. Results: ME/CFS patients reported significantly elevated GI symptom frequency and severity compared with controls, with 53% of ME/CFS patients versus 8% of controls reporting a prior diagnosis of irritable bowel syndrome. GI symptom burden correlated with fatigue, cognitive difficulties, flu-like symptoms, pain, sleep disturbances, neurological complaints, and sensory sensitivities, independent of illness duration. CRP levels were higher in patients with greater GI symptoms and correlated with GI, fatigue, musculoskeletal pain, and flu-like symptom burden. Patients with greater flu-like symptom expression exhibited higher IgM responses to dietary gliadin and bacterial lipopolysaccharide. These associations were not detected in controls. Conclusions: GI symptoms are a prominent, clinically relevant dimension of ME/CFS, associated with broader symptom burden and inflammatory heterogeneity. These findings highlight the relevance of gut-related and immune processes in ME/CFS and underscore the value of incorporating GI symptom assessment in translational studies to help…
June 20, 2026 at 12:16 PM
Reposted by EndMalnutritioninME
meassociation.org.uk
The ME Association & the 25% ME Group have worked together to create this new guide for carers, especially carers of people with Severe & Very Severe ME.

Caring is vitally important but it can be quite isolating….We understand the difficulties you may face.

Free download: meassociation.org.uk/v9cv
IMAGE DESCRIPTION: A person holding the booklet. Wording: New Booklet: Caring for Caregivers. Filled with practical information and resources for carers. 25% ME Group and the ME Association Logo (top right)
June 10, 2026 at 3:01 PM
malnutritionme.bsky.social
A carer's assessment can determine what help and support can be provided to the carer of a person with #severeME. This assessment is separate from the needs assessment of the person being cared for.
#CarersWeek
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
June 10, 2026 at 1:45 PM
Reposted by EndMalnutritioninME
murtoz.bsky.social
#SevereMErgency
#pwME, please sign this petition and email the hospital if you can. Instructions on the petition.

@tessamunt.bsky.social - here we go again.

@jamesmurrayldn.bsky.social @sharonhodgsonmp.bsky.social how many more times will you allow this to happen? We need safe beds for the Severe!
Sign the Petition
Save Caroline Roberts’ Life now: A very severe ME/CFS patient with high mortality risk.
www.change.org
June 10, 2026 at 1:24 PM
malnutritionme.bsky.social
A new resource, "Caring for Caregivers", has been produced by The 25% ME Group and The ME Association for #unpaidcarers of people with #severeME and very severe ME.

#CarersWeek
25megroup.org/wp-content/u...
25megroup.org
June 9, 2026 at 8:49 AM
Reposted by EndMalnutritioninME
mnpathway.bsky.social
This #CarersWeek, we want to thank carers for the vital role they play every day. They are often the first to spot early signs of malnutrition risk-reduced appetite, weight loss etc. If you’re supporting someone who is struggling with their nutrition, our practical leaflets can help: bit.ly/3QwpLv7
June 8, 2026 at 3:09 PM