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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…Continue readingRevisiting NICE Expert Testimony on trials in ME/CFS: Professor Jonathan Edwards

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Education

Reference Text: ME/CFS/PVFS – An Exploration of the Key Clinical Issues

The “Purple Book” – a benchmark text for clinicians and practitioners This guide, co-authored by Doctors with M.E. Honorary Fellow Dr. Charles Shepherd and Consultant Neurologist Dr. Abhijit Chaudhuri, provides a comprehensive review of research, diagnosis, symptoms, and all aspects of management regarding ME/CFS/PVFS. It is an essential evidenced-based summary for all health professionals and…Continue readingReference Text: ME/CFS/PVFS – An Exploration of the Key Clinical Issues

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Education

Learning from a medic’s own journey

Doctor with M.E.: My Journey with “Chronic Fatigue Syndrome” Doctors with M.E. Founder Dr. K.N. Hng shares her story of learning and suffering from ME/CFS in this engaging, thought provoking and concise book. With humanity, wit, and links to a variety of resources, she brings her own journey as a medic to life. A must…Continue readingLearning from a medic’s own journey

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Education

Wellcome Trust Funded Video Education Project

Dialogues for a Neglected Illness Dialogues for a neglected illness is a new Wellcome Public Engagement Fund project led by Natalie Boulton and Josh Biggs, with involvement by a number of medical and scientific professionals. Dr Luis Nacul, Dr Eliana Lacerda and Caroline Kingdon from the Cure ME team at the London School of Hygiene…Continue readingWellcome Trust Funded Video Education Project

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Education Education/CPD Material

CPD Module 1hr – Case Studies on Myalgic Encephalomyelitis / Chronic Fatigue Syndrome

A free online CPD module by Doctors with M.E. Director Dr Nina Muirhead is now available. The module is composed of 10 clinical cases that will challenge and improve your clinical knowledge and patient management for ME/CFS. This CPD module is endorsed by all major charities globally, with additional funding for distribution by the Scottish…Continue readingCPD Module 1hr – Case Studies on Myalgic Encephalomyelitis / Chronic Fatigue Syndrome

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Compliance

Jurisdictions and markets (UK and international)

Although the jurisdictional focus is the United Kingdom, direct equivalence can be found in other jurisdictions and markets. The policy, contractual and legal requirements on medical practice and indemnification provision follow a similar structure in most locales: neither official edict, professional body, private contract, the habitual nature of unlawful care nor eminently misinformed obfuscation can…Continue readingJurisdictions and markets (UK and international)

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Compliance

Obligation to not negate ME/CFS legal status

The absolute clarity of the legal status of ME/CFS is of immediate risk management importance, due its statutory, policy and third-party contractual implications frequently being ignored. These stem from habitually unlawful clinical judgement and arbitrarily discriminative administrative treatment that fail to account for the clarity of classification and associated lawful obligations. The absolute clarity of…Continue readingObligation to not negate ME/CFS legal status

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Compliance

Unlawful clinical judgement (flu and covid vaccination examples)

The law does not allow clinical judgement to be discriminatory or to breach duties of care – a normally uncontroversial statement with an unusual degree of unmanaged consequences for this field of disease. The law does not allow clinical judgement to be discriminatory or to breach duties of care – a normally uncontroversial statement with…Continue readingUnlawful clinical judgement (flu and covid vaccination examples)

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Compliance

Tests of clinical judgement lawfulness

Informed by the scientific, statutory and policy contexts outlined above, the following simple tests of clinical judgement lawfulness further outline lawful policy implementation requirements, mitigating the elevated probability of normalised unlawful clinical judgement in this context. Contrary conclusions constitute unlawful discriminatory implementation of policy, an arbitrary evasion of clear wording, thus discriminating on the very…Continue readingTests of clinical judgement lawfulness

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Compliance

Expertise procurement risk and reputational risk – medical and legal

Care should be taken to reassess existing expertise sources in the field of post-viral disease and to distinguish between 1) the marketability or familiarity of expertise versus 2) disproportionate risk of divergence from legally sustainable standards. It is rare for institutionalised medical norms to exclude scientific consensus to the degree witnessed in this field. This…Continue readingExpertise procurement risk and reputational risk – medical and legal