The 25% ME Group is campaigning for better care to prevent malnutrition in people with severe ME. The #EndMalnutritioninME campaign has a Twitter account. Follow us at @MalnutritionME. Thank you to all health professionals who care for people with #SevereME. #NHS75 Read this article to understand how to prevent malnutrition Read more…
Exeter mum’s heartbreak as daughter, 27, loses severe ME battle The 27-year-old was sent home to be cared for by her mum An urgent plea for change has been heartbreakingly conveyed by a mother who desperately tried to care for her 27-year-old daughter who died while battling severe Myalgic Encephalomyelitis Read more…
Participation request! Please help the Norwegian ME Association (Norges Myalgisk Encefalopati Forening) gather crucial information about ME/CFS by filling out their survey: The Norwegian ME Association has developed this excellent survey to fill knowledge gaps about the course of illness with ME/CFS. This effort will help inform policy decisions and Read more…
Implementation Statement from The National Institute for Health and Care Excellence NICE has today, International ME Awareness Day (Thursday, 12 May 2022) published its implementation statement which sets out the practical steps needed to put its recent guideline on the diagnosis and management of myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome Read more…
James Lind Alliance Priority Setting Partnership – Results: The Top 10+ priorities for research around ME / CFS have been identified by the Partnership. These priorities have been determined as a result of two surveys and workshops engaging with people living with Myalgic Encephalomyelitis, their families and carers, and health Read more…
ME Awareness 2022 “Core Guidance NG206: Key extracts from the ME/CFS guideline published by NICE October 2021, with a focus on changes that are required and the care and support of severely affected patients. Also highlights the health professional’s duty, in complying with the law on informed consent, to explain Read more…
We are very disappointed to hear of the ‘pause’ in publication of the NICE ME/CFS Guideline, already delayed in April. Following the hard work of the Guideline Development Group, we received news of the further delay of guideline publication with both dismay and profound concern for practitioners, their organisations and Read more…
NICE has today (17 August 2021) taken the decision to pause publication of its updated guideline on the diagnosis and management of myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome (ME/CFS). MECFS – statement on publication delay 17Aug2021
We are shocked and hugely disappointed to hear that the long-awaited NICE guidelines have been unexpectedly delayed at the last minute. NICE DELAY TO NEW GUIDELINES
The ME Association is pleased to announce the establishment of the Howes Goudsmit Prize for Severe ME research. This award has been created because of a very generous donation from Dr Ellen Goudsmit, a disabled scientist who helped to create awareness of ME in both the UK and the Netherlands Read more…