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 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.
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. 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.
Doctors with M.E. awaits notification of next steps with anticipation and will be fully engaged directly with our partners and advising individual cases where necessary.
About Doctors with M.E.
Doctors with M.E. is the global professional association for medical practitioners, scientists and researchers in the field of myalgic encephalomyelitis, the leading international experts in the field of post-viral disease and related conditions. Our mission is to improve patient outcomes worldwide by empowering medics, scientists and policymakers with up-to-date practices and scientific rigour, fostering collaboration between professionals, the industries they serve, patients and the public. We build a future where every surgery, hospital, agency, insurance provider and employer is enabled with accurate information that supports their patients, clients, shareholders and wider stakeholders.