A Step Forward in Recognition: New ‘Very Severe ME/CFS’ SNOMED CT Code The ME Association’s Healthcare 4 ME (H4ME) team are pleased to share an important step forward for people with very severe ME/CFS in the UK. Following an application submitted in January 2026, we can confirm that a new SNOMED CT (Systematized Nomenclature of Medicine Clinical Terms) concept has now been approved and published. SNOMED CT is an internationally validated system to record clinical information in the patient record and aids in enhancing communication of clinical data across healthcare systems. It was rolled out across GP systems in England from April 2018, replacing Read Codes as the standard for clinical coding. Until now, SNOMED CT included concepts for ‘mild’, ‘moderate’, and ‘severe’ ME/CFS, but had no equivalent for ‘very severe’ ME/CFS. This left a significant gap, because very severe ME/CFS is a clinically distinct category with its own specific care needs and risks. meassociation.org.uk/9fcp  #pwME #MECFS #MyalgicEncephalomyelitis #SevereME #VerySevereME

Jayne works for the NHS and is carer to her 22 year old adult son, James, who has moderate to severe ME/CFS. She has kindly shared her story this Carers Week 2026. "Alongside my full-time NHS role, I am also James’s carer. When he was first diagnosed, I was consumed with anxiety. I wanted to “bubble” him, to protect him from any unnecessary physical or social exertion, and to shield him from further infections. Even though my NHS role isn’t patient-facing, I was concerned that I might bring illness home.  In the early stages, my managers were wonderfully understanding, and I could work from home, but there is now an expectation to return to the workplace – even though my caring responsibilities haven’t changed." Read her story in full on the blog: meassociation.org.uk/ys49 #MECFS #pwME #CarersWeek2026 #Carers

We're Hiring: ME Connect Officer   Due to increasing demand, we're looking for a compassionate and resilient ME Connect Officer to join our Support Services team.  This is a challenging yet rewarding role where you can make a real difference to the lives of people affected by ME/CFS/Long Covid. Find out more and apply: meassociation.org.uk/x60g #MEConnect #MECFS #pwME #MyalgicE #LongCovid

Suzie, an NHS healthcare professional from Norfolk, supports her 16-year-old daughter who has ME/CFS. She has kindly shared her story for Carers Week 2026 - thank you Suzie! "My life now is a constant juggling act. I wear three hats every day – mum, health visitor, and carer. As a single parent to two children, working full time, I often worry the plates will slip. The exhaustion is immense, and I don’t know how long this will last or how long I can sustain it. However, my employer has been fantastic, they see me not just as an employee, but as a person, and as a carer." Read Suzie's story: meassociation.org.uk/d2km #MECFS #pwME #Carers #CarersWeek2026 #UnpaidCarers

Suzie, an NHS healthcare professional from Norfolk shares her experience of supporting her 16-year-old daughter who has ME/CFS and the positive support she’s received from her employer. Thank you @carersweek for sharing Suzie's story! #CarersWeek2026 #Carers #MECFS #pwME #MyalgicE

**Trigger Warning: Upsetting Content** Petition: Caroline Roberts: Inpatient Leicester Royal Infirmary Hospital with very severe ME "Caroline Roberts, once an active and loving mum to three, is suffering from very severe Myalgic Encephalomyelitis (ME/CFS). This debilitating condition has left her entirely bed-bound, living in darkness, and in need of urgent medical care. Just a week ago, Caroline was admitted to NHS Leicester Royal Infirmary Hospital in a worryingly deteriorated state due to inability to receive nutrition and hydration." Please consider signing & sharing: meassociation.org.uk/irts #pwME #MECFS #MyalgicEncephalomyelitis #SevereME #NHS

ME Connect is our free, confidential support service offering an understanding ear, information and signposting for people affected by ME/CFS and Long Covid. Get in touch: 0808 801 0484 meconnect@meassociation.org.uk Opening hours: Monday – Friday: 10am-5pm Thursday: late night until 9pm Saturday: 10am-12noon #MECFS #pwME #LongCovid #MEConnect

New downloadable booklet for Carers! The ME Association and the 25% ME Group have worked together to create this new guide for carers, especially carers of people with Severe and Very Severe ME. Caring is vitally important but it can be quite isolating and, if you are new to caring, it can be hard knowing what to do. We understand the difficulties of being a carer and are here to help. More information and the download link is here: meassociation.org.uk/v9cv #MECFS #pwME #MyalgicE #SevereME #Carers #UnpaidCarers #CarersWeek2026

Personal stories help raise awareness of the vital role carers play in our communities. Thank you @EdwardJDavey for sharing yours and helping to highlight Carers Week.

Yesterday was the beginning of Carers Week 2026 and this short video explains this year’s theme and how you can get involved - featuring ME Association Trustee Martine Ainsworth-Wells. #CarersWeek #CarersWeek2026 #CarerFriendlyCommunities

Thank you @TSB for being our headline sponsor this year, and to everyone taking part. Carers Week is made possible through Carers UK working together with six other major charities: @ageuk @CarersTrust @lbsorg @MEAssociation @mndassoc @Rethink_

Carers Week: Building Carer Friendly Communities report To mark @CarersWeek 2026, Carers UK and Carers Week supporter charities, including the ME Association, have published new research about carer friendly communities.  "Our research, based on polling of over 4,000 members of the public, found that, concerningly, nearly half (44%) of people currently caring do not feel their role as an unpaid carer is understood or valued by their community.  Some organisations and services are seen as more carer friendly than others. Whilst 67% of current and former carers using a pharmacy said it was carer friendly, over a fifth (21%) of current and former carers who had used public transport said it was not carer friendly." Read the full report on the carers week website: carersweek.org/about-carers-… #CarersWeek2026 #Carers #MECFS #LongCovid #pwME

Carers Week 2026: Yvette’s Story Yvette from Cumbria supports her husband, Andrew, a fourth-generation farmer, who has ME/CFS. Diagnosed 13 years ago, the couple have had to navigate a life very different to the one they once imagined. “In the farming community, the ‘tough it out’ culture often prevents people from seeking support with their health and wellbeing. Yet my husband has been open about his experience of farming with a chronic condition, and our local farming community have recognised what we’re facing. Being surrounded by a community that really cares, has lifted us and helped us keep moving forward.“ Read their story for Carers Week 2026: meassociation.org.uk/bupm #MECFS #pwME #CarersWeek 2026 #Carers

Independent Nurse: Understanding the complex nature of chronic fatigue [syndrome, ME/CFS] To mark ME Awareness month, Independent Nurse (online) published a post attributed to Dr Charles Shepherd, MEA Hon. Medical Adviser. We’ve been able to share information about ME/CFS, and emphasise the vital role that nurses play in supporting people with ME/CFS. Read more: independentnurse.co.uk/conte… #MECFS #pwME #HCP #Nurse #LongCovid

Carers Week 2026: Dave’s Story "I don’t describe myself as a carer. In my mind, I’m just filling the gaps where Jo can’t, doing what needs to be done to keep everything together. When Jo was first diagnosed, we didn’t think life would look like this forever. Seven years on, it hasn’t got any easier." Read Dave and Jo's story on the blog: meassociation.org.uk/k5vg #MECFS #pwME #LongCovid #CarersWeek #Carers