IMAGE DESCRIPTION: Photo of bed sheet in the dark, with a hand grasping the sheet. Video icon. Heading - Dialogues for a neglected illness: A video about Severe and Very Severe ME

Dialogues for a neglected illness: A video about Severe and Very Severe ME

You can watch the videos, created by Natalie Boulton and Josh Biggs, on their website: https://www.dialogues-mecfs.co.uk/films/severeme/

#SevereMEWeek #SevereME

Eight genetic signals have been identified. As DNA doesn’t change with ME/CFS onset, these findings reflect causes rather than effects of ME/CFS. The signals discovered are involved in the immune and the nervous systems, indicating immunological and neurological causes to this poorly understood disease.

At least two of the signals relate to the body’s response to infection. Other signals point to the nervous system, one of which researchers previously found in people experiencing chronic pain, reinforcing neurological contributions to ME/CFS. These signals align with how people with ME/CFS describe their illness.

“Most of us with ME have had our symptoms and experiences minimised, dismissed, and questioned, by medical professionals, employers, and even those close to us. I personally feel vindicated and hopeful for future developments in diagnostic tests, treatments, and cures (which currently don't exist). Any doubters can now have this research put in front of them.” Dee - FTWW Engagement Coordinator and Volunteer ME Champion

The World ME Alliance has also published new vital guidance for clinicians, designed to support self-advocacy when people with Severe ME may be too unwell to speak for themselves, and to guide healthcare professionals toward safer, more appropriate care. (a screenshot of the document)

As part of #SevereMEWeek, we are cautiously optimistic that we may finally be turning a corner and have hope for the future.

@decodemestudy.bsky.social has published findings from their research, and WorldMEAlliance has released vital guidance to clinicians.

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

IMAGE DESCRIPTION: Graphic of a laptop and a phone. Heading - MEA: Online Survey. Severe ME: Share your feedback. Link in Description.

1/4: Severe ME Survey - CLOSING DATE 18.08.25

Please complete via the following link:

https://meassociation.org.uk/sme2025

#MECFS #pwME #SevereME #SevereMEWeek

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/...

#SevereMEWeek

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

SEVERE ME DAY 2025 - 25% ME Group A day to remember everyone who is suffering or who has ever suffered from Severe and Very Severe Myalgic Encephalomyelitis.

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/...

Carer's assessment | Carers UK

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...

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.

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.

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

Also do let us know, if you'd like to be credited and tagged on social media OR whether it is to be posted anonymously. 

Thank you in advance for helping to raise awareness with your wonderfully creative artwork.

#pwME #MECFS #SevereME #pwSevereME #SevereMEWeek