NICE

Trial By Error: Professor Edwards’ Take on Nutrition and Severe ME Cases

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By David Tuller, DrPH Jonathan Edwards, a professor emeritus of medicine at University College London, has released a document involving the provision of care for people with severe ME, an issue at the core of some recent high-profile cases in England. The document, which Professor Edwards posted on a pre-print server, is called “Management of …

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Trial By Error: Dutch Survey Respondents Rate GET/CBT as “the Worst” Approach, Per New Report

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By David Tuller, DrPH A survey of more than 1500 patients in the Netherlands with a diagnosis of ME, CFS or ME/CFS rated graded exercise therapy as “the worst” interventions, according to an article on the site of the ME and Disability Support Group, while “explanation and advice about the importance of lying down to …

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Trial By Error: That Whine De Coeur about NICE’s Rejection of GET/CBT Regimen, and ME Action UK’s Disappearing Rebuttal

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By David Tuller, DrPH On July 10th, the Journal of Neurology, Neurosurgery, and Psychiatry (JNNP) published what can only be called a whine de coeur from a bunch of academics and investigators on the wrong side of a dispute with Britain’s National Institute for Health and Care Excellence (NICE). Their article was called “Anomalies in …

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Trial By Error: Families with Long Covid Kids Fight Against Medical/Social Services

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By David Tuller, DrPH For decades in the UK, parents of children with what was formerly called chronic fatigue syndrome have run the risk of being accused of making or keeping their kids sick and/or not pursuing proper treatment strategies. These cases have been based on the discredited belief that graded exercise therapy (GET) and …

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Trial By Error: An Updated Letter to the NICE Chief Executive About the Unpublished ME/CFS Guideline

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By David Tuller, DrPH I sent the following letter today to Professor Gillian Leng, chief executive of the National Institute for Health and Care Excellence (NICE). It was a follow-up to the letter I sent on September 1st about the agency’s decision to delay publication of it new ME/CFS guidelines. The letter has now been …

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