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
Replacing Working Group Glass Ceilings with Enforceable Minimal Standards (clickable video chapters below and on YouTube site) Further to our recent statement regarding major UK announcements, the above presentation provides the solution to concerns about new DHSC ME/CFS Delivery Planning mechanisms and final implementation. Current glass ceilings will limit success of this new process and…
Doctors with M.E Director and colleagues respond regarding the ignored importance of unpaid carers Doctors with M.E. Director, Dr. Nina Muirhead, has co-authored a BMJ Rapid Response regarding the topic of unpaid carers of people with ME. This important factor is largely ignored by the 2021 NICE ME/CFS Guidelines, the recent APPG report and the…
Doctors with M.E. warmly welcomes the UK Secretary of State for Health and Social Care’s recent inauguration of cross-nation delivery planning processes with his Chief Scientific Officer, Professor Lucy Chappell. Sajid Javid’s intervention on social media in the case of Maeve O’Neill was strikingly poignant, touching the hearts of many patients, carers and medics. We…
Psychiatry and Psychology Working GroupDr Crowder BSc (hons) MB ChB FRANZCP, Associate, DwMEYochai Re’em, M.D., Associate, DwME | Website | Twitter What is ME/CFS? ME/CFS is a chronic, complex, multi-system biological illness with often devastating consequences. It affects all age groups including children, and all social classes. About 75% of sufferers are female. It has…
Section 1.16 of the NICE ME/CFS Guideline requires that health and social care providers ensure that all staff delivering care to people with ME/CFS have an understanding of the patient experience. Doctors with M.E. asked the CFS/ME Research Collaborative Patient Advisory Group (CMRC PAG) what patients make of the new NICE guideline. They shared the…
When faced with a life changing, devastating chronic illness with no cure in a young person, doctors often don’t know what to do. Doctors with M.E. has produced guidance for GPs, but what do patients want? We asked patients to share examples of when doctors got it right. It is heartening to read this collection…
Contents Overview Myalgic Encephalomyelitis (ME), also known as Chronic Fatigue Syndrome (CFS), is a chronic, complex, multi-system biological illness with often devastating consequences. It affects all age groups including children and all social classes. About 75% of sufferers are female. It has a worse quality of life score than many other serious illnesses including cancer,…
Doctors with M.E. stands ready to work with partners and organisations to bring medical education up-to-date and assist in developing the right services for ME/CFS patients. “The new guideline represents a positive and total paradigm change, uniting around the science, official disease classification and medico-legal compliance implications.” “This translation of scientific knowledge into clinical practice…
DwME recognises research scientist Caroline Kingdon with post-viral clinical expert Dr. William Weir
Doctors with M.E. recognise the contributions to clinical practice, research literature and scientific innovation of our latest Honorary Fellows, Caroline Kingdon and Dr. William Weir. Their contributions have accelerated the quality of empirical work and grounded the literature in frontline clinical relevance. This experience has most recently culminated in their roles as full Committee Members…
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 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 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…
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…
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…
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…
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…
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…
Is it just me, or is the BMJ’s take on those NICE guideline committee resignations maybe a little biased? The BMJ are reporting that four members of NICE’s guideline committee on ME/CFS have stood down. One is the medical advisor of the ME Association, who stated yesterday that he found it too difficult to combine…
Further to our position statement on the 2021 NICE guideline update, Doctors with M.E. has joined the call for NICE to ensure that unconsulted changes are not injected, as these would avoid scrutiny by the scientific community. DwME considers the 2021 NICE guideline to be a watershed moment in the history of ME/CFS medical care…
On the 10th of November 2020, the National Institute for Health and Care Excellence (NICE) published its draft updated guideline on the diagnosis and management of myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome (ME/CFS). NICE has updated its 2007 recommendations on the use of psycho-behavioural treatments for ME/CFS, concluding that Graded Exercise Therapy (GET) should no…