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…
Position Statement 2021 NICE Guideline Update on Treatment and Management of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Position Statement – NICE 2021 guideline (1)
A major project is looking for your input. They want to know what research you think should be funded in the future, and the deadline for adding your ideas is fast approaching. Your responses must be in by Monday 5th July 2021. RESEARCH IDEAS
Response to letter in Times: https://www.thetimes.co.uk/article/why-is-britain-now-the-capital-of-long-covid-grjpvzfvw Dear Editor This report was both disappointing and poorly researched in the way it presented the worldwide prevalence of Long Covid and the incorrect accusation that Long Covid had become so prevalent in the UK due to the “chronic fatigue lobby”. A great deal Read more…
That this House marks the retirement of the Countess of Mar as the Founding Chair of Forward-ME; congratulates her on the success of Forward-ME which was established in 2008 to promote effective joint working between charities and organisations in order to maximise impact on behalf of people with Myalgic Encephalomyelitis Read more…
Abstract Very severe Myalgic Encephalomyelitis (ME), (also known as Chronic Fatigue Syndrome) can lead to problems with nutrition and hydration. The reasons can be an inability to swallow, severe gastrointestinal problems tolerating food or the patient being too debilitated to eat and drink. Some patients with very severe ME will Read more…
[Written Answers] Coronavirus: Vaccination ———————— Alex Sobel To ask the Secretary of State for Health and Social Care, what assessment his Department has made of the potential merits of prioritising people with myalgic encephalomyelitis for covid-19 vaccinations. https://test1.25megroup.org/download/1010/?v=3791
We are excited to announce a new international research study looking at the impact of ME/CFS on the quality of life of both patients and their family members. A questionnaire is available to complete to take part https://redcap.link/MECFSFamilyImpactStudy?fbclid=IwAR32BdQR4MxWgYtDKr0-39wW3av8XADFtc3PP9xIzZwBzdqKrz9wuTfHmfg