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Reposted by EndMalnutritioninME

The Malnutrition Pathway @mnpathway.bsky.social · 01/10/2026

Our October Resource of the Month is our Nutrition Care Plans - clear, practical guidance to help professionals turn screening results into action, including when food fortification is appropriate and when ONS may be needed. Explore the care plans: bit.ly/4zboAlC

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EndMalnutritioninME @malnutritionme.bsky.social · 30/09/2026

Many people with severe and very #severeME do not receive enough care time to meet their basic daily needs of eating, drinking, washing, and toileting. People with #ME need recovery time between these activities and care visits do not allow for this.

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ME Association @meassociation.org.uk · 24/09/2026

We would like to thank George Monbiot for writing this piece & highlighting the issues affecting millions in the UK with ME/CFS. George Monbiot will be discussing the article on Natasha Devon's radio show on Saturday:

bsky.app

Natasha Devon (@natashadevon.bsky.social)

George will be coming on my show this weekend to discuss this very important article. [contains quote post or other embedded content]

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Tom Kindlon @tomkindlon.bsky.social · 24/09/2026

As many of you already know, @georgemonbiot.bsky.social has published another hard-hitting article on ME in the Guardian today. Great to see such coverage, especially as the Guardian published some rubbish by others before www.theguardian.com/commentisfre... #MEcfs #PwME #MyalgicEncephalomyelitis

Opinion
ME / Chronic fatigue syndrome
Abandoned, dismissed and gaslighted: there is no excuse for the way ME sufferers have been betrayed
George Monbiot
George Monbiot
Changes in guidance and science seem to have little impact on millions of devastated lives. It’s a shocking social crisis playing out behind closed doors
Thu 24 Sep 2026 01.00 EDT
Somebody sitting on a bed looking at a wall with a display of negative past medical experiences
Illustration: Bill Bragg/The Guardian

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EndMalnutritioninME @malnutritionme.bsky.social · 17/09/2026

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

meassociation.org.uk

Hospital Support Pack - The ME Association

This pack was designed to help you explain the care […]

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EndMalnutritioninME @malnutritionme.bsky.social · 17/09/2026

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

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EndMalnutritioninME @malnutritionme.bsky.social · 11/09/2026

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

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EndMalnutritioninME @malnutritionme.bsky.social · 09/09/2026

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

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EndMalnutritioninME @malnutritionme.bsky.social · 07/09/2026

We can #EndMalnutritioninME with: 🔹Social care support 🔹Early recognition of nutrition and hydration problems 🔹Early intervention 🔹Artificial feeding 🔹Home Enteral Nutrition Service #Dietitians

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EndMalnutritioninME @malnutritionme.bsky.social · 18/08/2026

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

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Tom Kindlon @tomkindlon.bsky.social · 17/08/2026

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)

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EndMalnutritioninME @malnutritionme.bsky.social · 17/08/2026

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

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UK Charity Invest in ME Research @investinmeresearch.bsky.social · 16/08/2026

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...

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Action for ME @actionforme.bsky.social · 07/08/2026

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 🙏

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EndMalnutritioninME @malnutritionme.bsky.social · 08/08/2026

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

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EndMalnutritioninME @malnutritionme.bsky.social · 08/08/2026

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

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EndMalnutritioninME @malnutritionme.bsky.social · 08/08/2026

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

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EndMalnutritioninME @malnutritionme.bsky.social · 08/08/2026

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

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EndMalnutritioninME @malnutritionme.bsky.social · 08/08/2026

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

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BAPEN @bapen.bsky.social · 07/08/2026

✅ 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

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ThereForME @thereforme.bsky.social · 21/07/2026

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

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Tom Kindlon @tomkindlon.bsky.social · 20/06/2026

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…

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ME Association @meassociation.org.uk · 10/06/2026

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

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EndMalnutritioninME @malnutritionme.bsky.social · 10/06/2026

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-...

nhs.uk

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.

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Michiel @murtoz.bsky.social · 10/06/2026

#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!

change.org

Sign the Petition

Save Caroline Roberts’ Life now: A very severe ME/CFS patient with high mortality risk.

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EndMalnutritioninME @malnutritionme.bsky.social · 09/06/2026

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

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The Malnutrition Pathway @mnpathway.bsky.social · 08/06/2026

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

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EndMalnutritioninME @malnutritionme.bsky.social · 04/06/2026

Home Enteral Nutrition (HENS) Dietitians can be of enormous benefit to people with #severeME who are being tube fed at home. The 25% ME Group thanks all #dietitians who are supporting people with #severeME. #DietitiansWeek #EndMalnutritionInME

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EndMalnutritioninME @malnutritionme.bsky.social · 04/06/2026

NICE NG206 recommends adjustments for people with #severeME when planning hospital care. #DietitiansWeek #EndMalnutritionInME

Reasonable Adjustments for an Essential Inpatient Admission: A side room where possible; Low sensory stimuli; On the quietest part of the ward; Brief staff about what to expect; Learn from the people who know the patient best.

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The Malnutrition Pathway @mnpathway.bsky.social · 03/06/2026

Malnutrition care is a team effort & dietitians are at the heart of it. They train colleagues, support decision‑making, advise on appropriate use of ONS & help ensure consistent care across settings, supporting healthcare professionals & carers to act early & confidently #DietitiansWeek #DW2026

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EndMalnutritioninME @malnutritionme.bsky.social · 04/06/2026

#ME patients admitted to hospital for tube feeding are typically extremely ill, nursed at home in a darkened room. A hospital stay can be devastating for these patients, so #reasonableadjustments need to be made to prevent a relapse. #DietitiansWeek #EndMalnutritionInME

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EndMalnutritioninME @malnutritionme.bsky.social · 03/06/2026

Some people with #severeME are unable to meet their nutritional needs. This may be due to gastrointestinal problems, swallowing difficulties, or due to extreme debility. Early tube feeding is beneficial for these patients. #DietitiansWeek #EndMalnutritionInME

Very severe ME/CFS and Nutrition: Some people cannot meet nutrition and hydration needs; May be due to debility/dysphagia: Early intervention tube feeding has been shown to be beneficial.

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EndMalnutritioninME @malnutritionme.bsky.social · 03/06/2026

NICE guideline NG206 refers to the NICE Clinical Guideline CG32 when people with #severeME need nutrition support, including oral nutritional support, enteral tube feeding, and parenteral nutrition. #DietitiansWeek #EndMalnutritionInME

Additional Guidance: Only 1 mention of tube feeding, but NICE Clinical Guideline 32, Nutrition support for adults: oral nutrition support, enteral tube feeding and parenteral nutrition.

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EndMalnutritioninME @malnutritionme.bsky.social · 03/06/2026

Weight may need to be assessed by mid upper arm circumference, as people with #severeME may be unable to stand to be weighed nor tolerate being hoisted. #DietitansWeek #EndMalnutritionInME

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EndMalnutritioninME @malnutritionme.bsky.social · 03/06/2026

Screening for malnutrition in people with #ME requires a screening tool such as MUST. #DietitiansWeek #EndMalnutritionInME www.bapen.org.uk/must-and-sel...

bapen.org.uk

The ‘MUST’ Explanatory Booklet | BAPEN

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EndMalnutritioninME @malnutritionme.bsky.social · 02/06/2026

NICE guidance is to refer people with #severeME to a dietitian with special interest in #ME and to monitor those at risk of malnutrition. #DietitiansWeek #EndMalnutritionInME

Advice on nutrition and severe ME, NG206: Outlines gastrointestinal problems people with severe ME/CFS may have; Dietetic assessment for patients at risk of malnutrition; Advises about ways to increase nutritional intake.

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EndMalnutritioninME @malnutritionme.bsky.social · 02/06/2026

NICE guideline NG206 addresses dietary management in #ME patients to minimise symptoms such as nausea and swallowing difficulties. It also acknowledges that purchasing and preparing food may be difficult. #DietitiansWeek #EndMalnutritionInME

What does NICE guidance 206 tell us? It covers dietary management and managing gastrointestinal symptoms: Dietetic assessment within an ME/CFS clinic.

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EndMalnutritioninME @malnutritionme.bsky.social · 02/06/2026

Dietetic support can help #unpaidcarers to provide the best possible nutrition to their loved one. #DietitiansWeek #EndMalnutritionInME

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The Malnutrition Pathway @mnpathway.bsky.social · 01/06/2026

It’s #DietitiansWeek & we’re celebrating the expertise, compassion & impact of dietitians across all care settings. Our June Resource of the Month is our PCN dietitians page which showcases the essential role they play in malnutrition care - www.malnutritionpathway.co.uk/pcn/dietitian.html #DW2026

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EndMalnutritioninME @malnutritionme.bsky.social · 02/06/2026

#Dietitians can aid a patient with #ME to optimise their diet while minimising energy demands and gastrointestinal symptoms. #DietitiansWeek #EndMalnutritionInME

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EndMalnutritioninME @malnutritionme.bsky.social · 02/06/2026

NICE guideline NG206 recognises the nutritional problems people with #ME may face, and the need for dietetic input to prevent malnutrition. #DietitiansWeek #EndMalnutritionInME

NICE Guidance 206: 11 mentions of 'diet' or 'dietary'; 4 mentions of nutrition; 3 mentions of malnutrition' 1 mention of tube feeding.

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EndMalnutritioninME @malnutritionme.bsky.social · 01/06/2026

Co-morbidities associated with #ME can further compromise nutritional intake. #DietitansWeek #EndMalnutritionInME

Co-morbidities: Irritable Bowel Syndrome; Mast Cell Activation Disorder; Postural Tachycardia Syndrome; Fibromyalgia; Gastroparesis.

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EndMalnutritioninME @malnutritionme.bsky.social · 01/06/2026

#ME can cause diet and nutritional problems which can benefit from dietetic input. Gastrointestinal problems are common at all severities of ME. #DietitiansWeek #EndMalnutritionInME

Gastrointestinal Problems. ME/CFS can cause diet and nutritional problems which benefit from dietetic input and input from the wider MDT: Gastrointestinal symptoms common across the disease severities: 85% of ME patients and 65% of LC patients had gastrointestinal problems.

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EndMalnutritioninME @malnutritionme.bsky.social · 01/06/2026

The cardinal feature of #ME is post-exertional malaise (PEM). PEM can be triggered by shopping and preparing food. In #severeME, PEM can be triggered by just lifting a cup or chewing food. #DietitiansWeek #EndMalnutritionInME

Post Exertional Malaise. The worsening of symptoms associated with minimal amounts of activity: Energy expenditure can be physical, cognitive or emotional: Impacts nutrition and hydration.

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EndMalnutritioninME @malnutritionme.bsky.social · 01/06/2026

About 25% of #ME patients are housebound or bedbound. There is no cure for #ME, and we do not know how many older people have ME. We do know that many people have had ME for decades. #DietitiansWeek See Helen Baxter's presentation on how #dietitians can help: www.youtube.com/watch?v=buCc...

ME/CFS is a chronic, fluctuating condition affecting multiple body systems. Approximately 250,000 people in the UK have ME/CFS - we don't know how many are older adults. Many similarities with Long Covid. It ranges in severity from mild to severe. Approximately 25% of patients with ME/CFS are severely affected; housebound or bedbound.

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EndMalnutritioninME @malnutritionme.bsky.social · 29/05/2026

Digestive problems are very common among people with #ME, across all severities. In #severeME they can lead to malnutrition. We need research into gastrointestinal symptoms in #ME and better clinical care to #EndMalnutritionInME #WDHD2026 #WorldDigestiveDay

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Adam @abrokenbattery.bsky.social · 19/05/2026

Full talk: ‘Visiting severe #MECFS patients – A Compassion in Practice approach’ (2019). Thanks to Hope4MEFibroNI and JoanMcParland for always organising such good conferences. youtu.be/OkG_0G5Pc9w?...

youtu.be

Hope4ME 2019 Conference- Caroline Kingdon

YouTube video by Hope4MEFibroNI

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