Categories
News Policy Positions

Rapid Response and Expert Comment: NICE Guideline Delay and Accommodation of Unlawfulness

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 patients. Continued delay or deviation from evidence based recommendations risks patient harm, compromises good practice and exposes organisations to continued unmanaged risk.

“NICE does not have the power in law to accommodate unlawfulness, malpractice nor industrialised scientific illiteracy. Nor does it have the power to accommodate vested interests over clinical needs or lawful requirements”

Doctors with M.E.

NICE is empowered to support UK practitioners in delivering best-practice and evidence based treatment to patients. NICE does not have the power in law to accommodate unlawfulness, malpractice nor industrialised scientific illiteracy. Nor does it have the power to accommodate vested interests over clinical needs or lawful requirements.

“Where such guidelines accommodate habitually contra-scientific belief systems, that official output must be ignored by practitioners and providers as an enforceable requirement of law and elementary compliance.”

Doctors with M.E.

These realities also apply to any future guidelines. Where such guidelines accommodate habitually contra-scientific belief systems, that official output must be ignored by practitioners and providers as an enforceable requirement of law and elementary compliance. Enforceability requires neither judicial review nor other action when medical practice violates implications from the legally demonstrable scientific consensus.

Patients come first. Sufficient evidence of harm, medical trauma and institutionalised discrimination are live risks to professionals’ indemnification and to frontline organisations who fail to manage the compliance implications.

“Regardless of how NICE decides to proceed, the compliance and medico-legal context is clear and we shall be guiding our professionals to ensure that they are on the correct side of their duties of care, professional standards and patients’ best interests.”

Doctors with M.E.

Regardless of how NICE decides to proceed, the compliance and medico-legal context is clear and we shall be guiding our professionals to ensure that they are on the correct side of their duties of care, professional standards and patients’ best interests. We stand ready with our partners in this unusually clear legal and scientific context to offer simple solutions to all stakeholders and each of their organisational departments.

We await notification of next steps with anticipation and will be fully engaged directly with our partners and advising individual cases where necessary.

(We are also coauthors of the Forward ME response, which can be found here)

More NICE ME/CFS Guideline 2021 Content

girl leaning her head on her hand while closing her eyes

Public Letter to RCPCH: DwME Associate and Neurodisability Paediatrician Dr. Ben Marsh calls for explanation

A call for the Royal College of Paediatrics and Child Health to explain undermining of scientific review Doctors with M.E. Associate, Neurodisability Paediatrician and representative on the JLA Priority Setting Partnership Steering Group, Dr. Ben Marsh, has publicly written to the President of The Royal College of Paediatrics and Child Health (RCPCH). He requested an explanation for the College’s…

The NICE debacle – will NICE survive?

The current NICE debacle and extraordinary deviation from normal procedure and published protocol is further evidence of institutionalised discrimination by large sections of the UK medical establishment.  That one professional and patient group should be treated in a manner at odds with clear and growing scientific knowledge would be unacceptable in any other disease.  Yet…

Doctors with M.E. Honorary Fellow and founding father of the Human Genome Project comments on the NICE pause – “it is time for the UK to join the rest of the scientific community”

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. “It is a travesty that NICE is…

Global scientific communities and clinicians urge NICE to Publish ME/CFS Guideline now

Doctors with M.E. Board, Fellows & Associates are co-signatories to a public letter written by Dr. David Tuller of the Center of Global Public Health at the University of California, Berkeley. The letter writes to urge NICE to publish the new ME/CFS guideline. It is signed by scientists, clinicians, academics and other experts from the…

BBC Radio 4: Doctors with M.E. feature on flagship Woman’s Hour

ME, Long Covid and the NICE Guideline 2021 Delay Doctors with M.E. Director, Dr. Nina Muirhead, and Doctors with M.E Honorary Fellow and Action for ME Medical Advisor, Dr. David Strain, discuss ME/CFS, Long Covid, the NICE guideline delay and the need for more education and resources in an interview on BBC Radio 4 Woman’s…

Mayo Clinic: ME/CFS Essentials of Diagnosis and Management Consensus Statement

This comprehensive article, co-authored by Doctors With M.E. Honorary Fellows, Dr. Lucinda Bateman and Professor Anthony Komaroff, summarises best clinical practice recommendations for generalist and specialist health care providers treating adults affected by ME/CFS. The article covers epidemiology, prognosis, etiology and pathophysiology, diagnostic approach with new diagnostic criteria, and management of ME/CFS. The clinicians behind…

bridge over river in city

Public Letter to DHSC, MHRA, HoC, NICE: Call for a ‘Medical Regulatory Agency’

A call for change in the face of long-standing regulatory failure 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…

Honorary Fellow on the new NICE Guideline for ME/CFS: Ten Questions Answered

Your questions regarding the new NICE Guideline announcement this week have been broken down and addressed by Doctors with M.E. Honorary Fellow, Professor Brian Hughes: 1. What’s going on? 2. How is the new guideline different to the old one? 3. Why is the new guideline being welcomed? 4. Why was the old guideline problematic?…

measurement-millimeter-centimeter-meter-162500.jpeg

Revisiting NICE Expert Testimony on trials in ME/CFS: Professor Jonathan Edwards

The following expert testimony was provided to the NICE ME/CFS Guidelines Committee by Professor Jonathan Edwards. It regards the difficulties of conducting trials in ME/CFS and the implications of not accounting for these. The difficulties of conducting intervention trials for the treatment of myalgic encephalomyelitis / chronic fatigue syndrome Summary testimony Therapeutic trials for ME/CFS…

library high angle photro

Revisiting NICE Expert Testimony on ME/CFS education and training: Dr. Nina Muirhead

The following expert testimony was provided to the NICE ME/CFS Guidelines Committee by Doctors with M.E. Director, Dr. Nina Muirhead. It regards the problematic context of lacking information, education and support for health and social care professionals. Information, education and support for health and social care professionals providing care for people with ME/CFS. Summary testimony…