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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

a boy sitting between the lying women

ME/CFS Clinical Tool – Measuring Family Quality of Life Impact

Striking evidence for how to improve standards of holistic care and service provision The FROM-16 validated quality of life tool is a pragmatic addition to the frontline clinical toolbox, allowing for holistic decision making to be made regarding care and broader service provision. Doctors with M.E. Director Dr. Nina Muirhead presents new findings with her…

La guía NICE EM/SFC aplicada a la práctica en atención primaria

Traducido por / Translated by Dr. Esther GarcésDoctors with M.E. Associate, Family Physician and RadiologistMédico especialista en Medicina Familiar y Comunitaria y Médico especialista en Radiodiagnóstico Contenido Descripción General La Encefalomielitis Miálgica (EM) —también conocida como Síndrome de Fatiga Crónica (SFC)— es una enfermedad orgánica crónica, compleja y multisistémica con consecuencias, a menudo, devastadoras. Se…

ME/CFS: What Psychiatrists need to know

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…

Getting compliant with NICE guideline – the patient experience requirement

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…

What does good practice look like? Patients chip in

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…

Dari garis panduan kepada praktikal: Implikasi NICE ME/CFS buat doktor-doktor pakar perubatan keluarga (GP)

Sumber asal diterbitkan dalam Bahasa Inggeris pada 15/1/2022. Diterjemahkan oleh / Translated byDr Hannah Nazri MBChB, BSc (Hons), MSc (Oxon)Doctors with M.E. Associate, clinician scientist, entrepreneur, and women’s rights & education advocate.Instagram | Twitter | LinkedIn | Blog Kandungan Gambaran keseluruhan Myalgic Encephalomyelitis (ME), juga dikenali sebagai Sindrom Kelesuan Kronik (Chronic Fatigue Syndrome – CFS),…

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Facilitators to better ME Care

It is widely acknowledged that barriers to good care for ME/CFS patients exist due to the lack of biomarker, disease specific treatments and poor medical education about this disease. There is also inherent cultural bias against invisible illness and illnesses affecting predominantly women.  We sought the opinions of 656 volunteers who took the time and…

Mise en pratique : Ce que l’EM/SFC signifie pour les médecins généralistes, selon les préconisations du NICE

Publié initialement en anglais le 15/01/2022. Veuillez nous excuser, nous sommes conscients qu’il y a un problème de ponctuation. Nous faisons notre maximum pour le résoudre au plus vite. Traduit par Millions Missing France Contenu Vue d’ensemble L’encéphalomyélite myalgique (EM), également connue sous le nom de syndrome de fatigue chronique (SFC), est une maladie biologique…

Myalgic Encephalomyelitis: Northern Ireland Educational Webinar Series

We are pleased to announce that the M.E. (Myalgic Encephalomyelitis) Educational Webinar Series organised by partner organisation Hope 4 ME & Fibro Northern Ireland and hosted by the Health and Social Care Clinical Education Centre of Northern Ireland is now available for public viewing. Featuring experts and speakers from Hope 4 ME & Fibro N.I.,…

Putting it into Practice: What NICE ME/CFS means for GPs

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,…