NICE

Doctors With M.E. Honorary Fellow And Founding Father Of The Human Genome Project Refutes Claim That Medics Must Agree With NICE ME/CFS Guidelines

From Doctors With M.E. Doctors with M.E. Honorary Fellow Professor Ron Davis has issued a powerful statement condemning the failure of the UK National Institute of Clinical and Care Excellence to maintain its independence. He describes how it has instead accommodated vested interests, which perpetuate low standards and contra-scientific medical belief systems. To read the […]

Public Letter To DHSC, MHRA, HoC, NICE: Call For A ‘Medical Regulatory Agency’

By Doctors With ME. The following public communication from our Governance Board regards the opportunity for a new “Medical Regulatory Agency”, ready for the post-brexit and the machine learning digital eras.  The letter also contains background pertaining to long-standing regulatory failure, unlawful medical norms, contra-scientific medical belief systems and their contributions to lack of pandemic readiness. […]

Physios For ME Response To Delayed NICE Guidelines

From Physio’s For ME. The last minute delay to publication of the NICE Guidelines has shocked everyone involved in the process, including Physios for ME. As stakeholders we had already taken part in the lengthy and in-depth consultation process and we find it difficult to understand what more can be discussed given the finalised guidelines […]

Trial By Error: A Letter Urging NICE To Publish ME/CFS Guideline Without Delay

By David Tuller, DrPH This morning, I sent the following letter to Professor Gillian Leng, the chief executive of the National Institute for Health and Care Excellence. ********** Professor Gillian Leng CBEChief ExecutiveNational Institute for Health and Care Excellence Dear Professor Leng, Please find below a letter urging NICE to publish the new ME/CFS guideline, […]

Public Letter To DHSC, MHRA, HoC, NICE: Call for A ‘Medical Regulatory Agency’

By Doctors With ME. The following public communication from our Governance Board regards the opportunity for a new “Medical Regulatory Agency”, ready for the post-brexit and the machine learning digital eras.  The letter also contains background pertaining to long-standing regulatory failure, unlawful medical norms, contra-scientific medical belief systems and their contributions to lack of pandemic readiness. […]

Is the Sunk Cost Fallacy ‘First Doing Harm’ In Chronic Fatigue Syndrome?

By Steven Lubet in Social Science Space. It is a truism in psychology that old ideas die hard and even educated minds are hard to change, but it is still distressing to see the phenomenon displayed in medicine, where open-mindedness is formally celebrated as a virtue. Recent events in the United Kingdom, however, establish once again that settled […]

Planned Review Statement Of NICE Guidelines For ME CG85

From Invest in ME Research. Following the astonishing decision by NICE to “pause” the release of the 2021 Guideline on the Diagnosis and Management of Myalgic Encephalomyelitis (ME or ME/CFS) – CG869 [1] then the review that Invest in ME Research was preparing had to be stalled also. NICE has been totally lacking in transparency […]

NICE Update

NICE guideline update – 27th August 2021 ” NICE announces next steps for ME/CFS guideline NICE recognises the importance to patients of the updated guideline on the diagnosis and management of myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome (ME/CFS) and is keen to move forwards as quickly as possible. Following the pause to the publication of […]

Invest In ME Research Summer 2021 Newsletter

The pandemic has affected, and continues to affect everything.2020 was an awful year – yet 2021 seems to be eclipsing that in many ways.We are not sure to whom we can accredit the image to the right – yet it sums up much of the experiences and frustration.However, despite the constraints placed upon everybody, the […]

M.E. – Not So NICE

M.E. – Not So NICE I’m still not ready for this existenceDespite the medical world’s insistenceSo many times hearing it saidThis M.E. nonsense is all in my head Like the waiter too quick to clear your plateWhen your shout is just too little, too lateBarmen taking your glass awayStill half full yet expected to pay […]

Statement On The NICE Guidelines Delay

From Emerge Australia. Emerge Australia is very disappointed to learn that the UK’s National Institute of Health and Care Excellence (NICE) has announced that it has paused the publication of its new ME/CFS clinical guidelines, which had been due to be released on August 18. This is a devastating development for ME/CFS patients around the world, especially those in the UK who have waited years for these new guidelines.   The draft of the new […]

NICE – Contemptuous And Contemptible: The Case For Community Publication Of The “Paused” Guideline For “ME/CFS”

By Valerie Eliot Smith. Disclosure: I have lived with the discrete illness myalgic encephalomyelitis since 1981. I have written extensively about the NICE process (amongst other topics) in relation to this illness. ****************************** Background In 2017, the English National Institute for Health and Care Excellence (NICE) began the process of updating the dangerously out-of-date guideline for “ME/CFS” (myalgic encephalomyelitis/chronic fatigue syndrome), […]

A National Health Body Seems Set To Throw Millions Of People Under The Bus

By Steve Topple in The Canary. THIS ARTICLE WAS UPDATED AY 7PM ON WEDNESDAY 18 AUGUST. IT PREVIOUSLY STATED THAT NICE WAS LOOKING FOR 50 PATIENTS TO GIVE CASE STUDIES. IT LATER BECAME APPARENT THAT IT WAS TWO DOCTORS UNRELATED TO NICE ASKING FOR THIS.  The National Institute for Health and Care Excellence (NICE) has […]

Letter To NICE Management From Invest In ME Research

From Invest In ME Research. At this time we should be reporting on our response to the finalised NICE guidelines for ME – following their publication on the planned 18th August date.Instead, despite having spent time and resource on reviewing the embargoed guidelines, we find ourselves reporting on the utter incompetence and mendacity of NICE […]

Summary: Structural Dimensions Of The Biopsychosocial Model

From Healthcare Hubris. Following feedback, I have written a summary of the series of four blogposts looking at structural (essentially, socio-political) dimensions of the biopsychosocial (BPS) model. The full series of blogposts can be found here: Blog 1: Beginnings Blog 2: Constructs and propaganda Blog 3: Academic-state-corporate nexus Blog 4: Downstream effects of upstream corruption […]

Publish The NICE ME/CFS Guideline Now

#MEAction UK started this petition to The National Institute for Health and Care Excellence We call on the National Institute for Health and Care Excellence (NICE) to publish the finalised ME/CFS guideline in its current form.  People with ME are depending on the finalised guideline to transform the care they receive: ensuring accurate diagnosis, appropriate symptom management, […]

The NICE Guideline ME/CFS: Personal Observations Dr Charles Shepherd

From The ME Association. We should have been welcoming the arrival of a completely new NICE guideline on ME/CFS today. A guideline that acknowledged ME/CFS as a serious and complex medical condition. In fact, we had sent an embargoed press release and statement from Forward-ME to all the news-media in anticipation of its publication. It […]

Outrage At Chronic Fatigue Syndrome Advice Update Pause

From BBC News. A health watchdog has paused a final update to ME treatment guidance just hours before planned publication due to disagreement on its contents – a move that has angered some charities. NICE says it needs more conversations with patient groups and professionals so that the advice is supported. There are strong and […]

NICE Pauses Publication Of Updated Guideline On Diagnosis And Management Of ME/CFS

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). The guideline recognises that ME/CFS is a complex, multi-system, chronic medical condition where there is no ‘one size fits all’ approach to managing symptoms. The causes […]

The New NICE Guideline For ME/CFS: Ten Questions Answered

By Brian Hughes in The Science Bit. 1. What’s going on? This week, in the United Kingdom, the National Institute for Health and Care Excellence (NICE) is publishing a new guideline for the diagnosis and management of a set of conditions referred to as “myalgic encephalomyelitis (or encephalopathy)” or “chronic fatigue syndrome” (ME/CFS). “ME/CFS” is a broad acronym that is often used […]

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