On 24 April 2025, the Senedd (Welsh Parliament) tabled Motion NNDM8884 to address the urgent needs of people living with Myalgic Encephalomyelitis (ME), a chronic and disabling illness. Key points from the motion include: Recognition of ME Severity: ME affects individuals at varying levels, with 25% classified by NICE as either severely or very severely…
A statement in the Northern Ireland Assembly marked the beginning of ME Awareness Week, drawing attention to the challenges faced by those living with myalgic encephalomyelitis (ME). Robbie Butler MLA emphasized the severe impact of ME, describing it as a complex neurological condition that leaves many housebound or bedridden. He noted the lack of specialist…
A series of parliamentary written answers from May 2025 address the UK Government’s approach to Myalgic Encephalomyelitis (ME/CFS) and related issues, including social security benefits, personal independence payment (PIP), healthcare services, employment, and discrimination protections. Key points include: The Government’s Pathways to Work Green Paper outlines reforms to health and disability benefits, aiming to reduce…
This document marks International ME Awareness Day 2025, celebrated annually on May 12th. It highlights the efforts and impact of ME Research UK, a Perth-based charity dedicated to funding and commissioning biomedical research on myalgic encephalomyelitis (ME)/chronic fatigue syndrome (CFS). Key points include: ME Research UK Achievements: Over 25 years, the charity has invested over…
This document provides a detailed overview of recent discussions and updates from the UK Parliament regarding long COVID, myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome (CFS), and related healthcare services and research initiatives. Key points include: Long COVID Clinics: Integrated Care Boards (ICBs) are responsible for service commissioning. An NHS England stocktake revealed…
Recent discussions in the UK Parliament have focused on improving the care and support for individuals affected by myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS). Key areas of action include: Delivery Plan Development: The government is finalizing a comprehensive ME/CFS delivery plan aimed at boosting research, improving healthcare services, and enhancing education and…
The UK Government discussed developments in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and long COVID care during February 2025. Key highlights include: Delivery Plan for ME/CFS: The final delivery plan aims to focus on boosting research, improving education, and bettering the lives of those affected. It is set to be published by March 2025, informed by…
January 2025 saw crucial discussions in the UK Parliament focusing on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and post-COVID-19 services. Key updates include: ME/CFS Services Stocktake: NHS England conducted a comprehensive review of ME/CFS and post-COVID-19 services to evaluate current challenges, develop strategic recommendations, and enhance service delivery. Healthcare Training Improvements: The Department of Health and…
The NICE guidelines outline the diagnosis and management of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), emphasizing the need for medically led care, accurate and timely diagnosis, and ongoing support. Key points include: Nature of ME/CFS: A complex, chronic medical condition affecting multiple body systems, with quality of life often significantly lower than in other severe chronic…
ME (Myalgic Encephalomyelitis), also known as chronic fatigue syndrome, is a debilitating neurological illness that impacts over 7,000 people in Northern Ireland. Many patients suffer without a diagnosis or treatment plan, feeling stigmatized and unsupported. ME Support NI, a charity founded by Antoinette and David from west Belfast, offers invaluable aid to ME patients, providing…