Lives We Cannot Live is now open at the OXO Tower in London! We've asked visitors to share how they feel after walking around the exhibition. Scroll through the pictures to see what some members of our community have to say. Visit the exhibition: https://meassociation.org.uk/g59o #MECFS

If you have ME/CFS and need to have an anaesthetic, our resources can help you prepare. We worked with people with ME/CFS, including Kevin Coyne (pictured), to answer common questions and concerns 👉 ow.ly/960f50VQYqc #MEAwarenessMonth #WorldMEday @meassociation.bsky.social

Almost all people with #ME in this study had symptoms of autonomic dysfunction. The autonomic system regulates (among other things) the gastrointestinal tract. Impairment leads to digestive problems which can result in malnutrition in #severeME. #EndMalnutritionInME www.mdpi.com/3485610

There is an unmet need for dietetic support for people with #ME of all severities - mild, moderate, and severe. #Dietitians can make an enormous difference to the lives of people with ME, particularly those with #severeME. #EndMalnutritionInME

Today's #ThereForME blog shares findings from a mini survey. We asked carers and clinicians with experience supporting people with v severe ME whether the Health Secretary should commission a service for v severe ME - and if so, what it should look like. Link in next post 👇

People with #ME are at risk of relapse after visiting or admission to hospital. Help them by: 🔹Not altering their daily meds and supplements 🔹Reducing sensory stimuli to a bare minimum 🔹Providing artificial nutrition at an early stage. #WorldPatientSafety meassociation.org.uk/wp-content/u...

Gastrointestinal symptoms are very common among people with #ME. Clinical investigation and scientific research are needed to characterise and understand these symptoms. #EndMalnutritionInME

G is for Gastroparesis.  For more info on gastroparesis, visit: https://meassociation.org.uk/medical-matters/items/what-is-gastroparesis/ For more general advice on diet & nutrition, download our free booklet: https://meassociation.org.uk/curr #pwME #MECFS #Gastroparesis #Bloating #Nausea

New report from @bapen.bsky.social Patient Network Group on improving services for people living at home with an enteral tube youtu.be/_NkDzm5FBKI?...

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. #dietitians #EndMalnutritionInME www.mdpi.com/2227-9032/9/...

People with #ME, carers, and healthcare professionals in the UK with experience of tube feeding are invited to complete the ME/CFS Tube Feeding Survey for BACME. bacme.info #EndMalnutritionInME

To identify and manage malnutrition in adults with severe #ME, use the Malnutrition Pathway. @mnpathway.bsky.social @bapen.bsky.social #SevereMEDay #EndMalnutritionInME #dietitians www.malnutritionpathway.co.uk

It is important to screen people with severe #ME who are at risk of malnutrition using a validated screening tool such as MUST. @BAPENUK @mnpathway.bsky.social #SevereMEDay #EndMalnutritionInME #HANWeek www.bapen.org.uk/must-and-sel...

In severe #ME, sometimes oral intake cannot meet nutritional needs. Tube feeding and intravenous saline may be necessary. These can help conserve evergy as well as prevent malnutrition and dehydration. #SevereMEDay #EndMalnutritionInME #HANWeek www.mdpi.com/2227-9032/9/...

To help someone with severe #ME with eating and drinking: 🔹Ensure food and drink are always within reach 🔹Provide foods that are nutrient dense and easily accessed 🔹Use lightweight tableware and cutlery and a non-spill bottle with a straw. #SevereMEDay #EndMalnutritionInME

When a person with #ME joins The 25% ME Group, their carer's details can be included on the contact list. This will enable them to get in touch with other #carers. #SevereMEDay 25megroup.org/memberships/

We recognise that people with #ME and their carers have, through dealing with such a complex disease, gained rare and valuable lived experience which health and social care sectors should utilise. #SevereMEDay

Caring for someone with #ME can be difficult because of the nature of the disease and the lack of understanding and support by some professionals and the wider public. #SevereMEDay

In August, we especially take time to honor the 25% living with the most severe form of this disease & remember those who have lost. August 8th is the Severe Myalgic Encephalomyelitis (ME) Day of Understanding and Remembrance, started by the 25% ME Group as a response to the death of Sophia Mirza.

World ME Alliance publish new resource - Supporting People with Severe and Very Severe ME/CFS "Through this concise and practical document our goal is to help give voice and agency back to those who are often left unseen and underserved by healthcare systems."

People with severe #ME may need food to be pureed or in small pieces to avoid the need for chewing. Some may eat little and often, up to six meals a day. Others may only be able to eat one or two meals per day. #SevereMEWeek #EndMalnutritionInME

Some people with severe #ME need to be fed because they are unable to prepare meals, hold cutlery, or cut up food. #SevereMEWeek #EndMalnutritionInME @bapen.bsky.social @mnpathway.bsky.social

In people with #severeME, repetitive movement such as lifting a cup or cutlery causes post-exertional malaise, and they may need to be given food and drinks by a carer. #SevereMEWeek #EndMalnutritionInME

Because ME is an energy-limiting condition, people with ME may have to rely on ready meals, but may be intolerant of the preservatives and additives in those meals. #SevereMEWeek #EndMalnutritionInME

To reduce the risk of a flare up or relapse, people with #ME need to be able to set parameters around when, where, and for how long they interact with other people, including health and social care professionals. #SevereMEWeek www.mdpi.com/2227-9032/8/...

For people with severe #ME, even speaking can risk post-exertional mailaise, and they often need carers to speak for them. #SevereMEWeek

Sensory stimuli can cause a flare up or relapse in people with #severeME, so they require a low sensory environment—minimal light, noise, touch, movement, chemicals, and odours. #SevereMEWeek www.mdpi.com/2227-9032/9/...

In severe #ME, everyday activities such as washing, eating, and talking can cause post-exertional malaise (PEM) which can cause flare ups or relapses. #SevereMEWeek

Carers with a low income may be eligible for Carer's Allowance. More information about eligibility and support for #carers is available on The 25% ME Group's website. #SevereMEWeek 25megroup.org/campaigning/...

Following a carer's assessment, #carers may get practical and emotional support, including help with jobs around the house. #SevereMEWeek www.carersuk.org/help-and-adv...

Unpaid #carers of people with #severeME are eligible for a carer's assessment. This assesses the impact of caring on the unpaid carer. #SevereMEWeek www.nhs.uk/social-care-...

#SevereME can result in the loss of two incomes in a household: that of the patient and that of the carer. #SevereMEWeek

Some carers of people with #severeME have medical conditions themselves, while some people with #ME are also #carers. #SevereMEWeek

Many people with #severeME depend on #carers. Often these are family members—most often mothers, but also fathers, spouses, siblings, and children. Some provide round-the-clock care. #SevereMEWeek

For Severe ME Awareness Week 2025, The 25% ME Group is shining a light on unpaid carers of people with #severeME. #SevereMEWeek.

We’re delighted to support #HANWeek2025, raising awareness of essential nutritional treatments: parenteral and enteral feeding, and oral nutrition supplements. Visit the PINNT website to learn more ➡️ bit.ly/4fEBT5D

It is estimated that 25% of people with #ME have severe or very severe ME. This means they are housebound (severe) or bedbound (very severe) and need support with activities of daily living. #SevereMEWeek

Gastrointestinal symptoms are very common among people with #ME and can lead to malnutrition. Yet there is very little research in this area. #HealthResearch #MedSky nutritionandmetabolism.biomedcentral.com/articles/10....

**TW: Upsetting Content** The Gordon Family have posted an unsettling update on the Change petition 'Save Karen Gordon from Dying of Malnutrition and Dehydration due to NHS Failings': https://meassociation.org.uk/9039  #TeamGordon #KarenGordon #pwME #MECFS #SevereME #MyalgicEncephalomyelitis

Calling people in Wales with #ME: Welsh Senedd Debate on Severe and Very Severe ME. Adam Price has sponsored a motion for debate about provision for severe and very #severeME. Tell your MS about the motion (SeneddMotion8884) wames.org.ul/cms-english/...

#ME is an energy-limiting illness causing difficulty in obtaining and preparing meals at all levels of severity. For those with #SevereME, even chewing and swallowing may become impossible. #EndMalnutritionInME

Some people with #SevereME need to be fed by a carer because they are unable to prepare meals, hold cutlery, or cut up their food. #EndMalnutritionInME

There is growing evidence for gastrointestinal impairments in #ME - gut dysbiosis, intestinal barrier dysfunction (leaky gut), bacterial translocation, and disturbances in the gut-brain axis. #EndMalnutritionInME www.frontiersin.org/journals/imm...

DWP “Thatcherite” welfare cuts condemned in scathing report by disabled people "We’ve gone beyond co-production – disabled people must run the DWP" is the verdict of a sweeping and scathing response to the government www.thecanary.co/uk/analysis/...

The daily toll of post-exertional malaise in #ME encompasses a wide range of symptoms and is difficult to predict or manage. www.frontiersin.org/journals/neu...

🔬 𝗠𝗘 𝗔𝘄𝗮𝗿𝗲𝗻𝗲𝘀𝘀 𝗪𝗲𝗲𝗸 𝗦𝗽𝗼𝘁𝗹𝗶𝗴𝗵𝘁: 𝗣𝗶𝗼𝗻𝗲𝗲𝗿𝗶𝗻𝗴 𝗥𝗲𝘀𝗲𝗮𝗿𝗰𝗵 𝗶𝗻 𝗠𝗘/𝗖𝗙𝗦 𝗮𝗻𝗱 𝗟𝗼𝗻𝗴 𝗖𝗢𝗩𝗜𝗗 This #MEAwarenessWeek, we're proud to share our progress in understanding and treating #MECFS and #LongCOVID. 🔗 precisionlife.com/longcovid-me...

Try to involve people with #SevereME in your #PPI. This may be via their family members and/or carers. #HealthResearch #MedSky #MEAwarenessWeek @precisionlife.bsky.social

Adjustments can be made to include people with #SevereME in research, including: 🔹train researchers in the needs of people with #ME 🔹use charities/support groups 🔹provide domiciliary visits 🔹support and flexibility for completing surveys #MEAwarenessWeek @precisionlife.bsky.social

Ensure you include additional costs of supporting participants with #SevereME in your #ME research funding application. Costs may include telephone support, printing and paper copies of surveys. #MedSky #HealthResearch #MEAwarenessWeek