The International Consensus Primer (ICP) is a one-stop user-friendly reference that covers aetiology and pathophysiology of ME/CFS, together with guidance regarding personalised assessment, diagnosis, management and treatment for this complex illness. Included within the guide is a comprehensive clinical assessment and diagnostic worksheet, to enable clear and consistent diagnosis of patients, and treatment guidelines, that…Continue readingInternational Consensus Primer for Medical Practitioners
Tag: Risk
Today we announce the Doctors with M.E. Committees and Working Groups structures. These allow our Registrants to participate on ongoing or ad hoc bases, driven by their interests and events. Compliance, legal, policy and practice management professionals are fundamental to driving change. We have thus introduced Compliance and Policy Affiliate registration status, to ensure that all…Continue readingAnnouncing our Committees and Working Groups
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…Continue readingRapid Response and Expert Comment: NICE Guideline Delay and Accommodation of Unlawfulness
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
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…Continue readingRevisiting NICE Expert Testimony on ME/CFS education and training: Dr. Nina Muirhead
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
Rethinking the Standard of Care for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome This recent report by Friedberg et al. critically examines research claiming that Cognitive Behavioural Therapy (CBT) and Graded Exercise Therapy (GET) are effective and safe treatments for ME/CFS. Analysis reveals unsubstantiated claims of recovery in non-blinded trials, which relied on subjective outcome measures, overly broad…Continue readingRethinking Care for ME/CFS Patients
Genetic risk factors of ME/CFS: a critical review Doctors with M.E. Honorary Fellow, Professor Chris Ponting co-authors a review that highlights the need for large genome-wide association studies, such as the much anticipated DecodeME project. Such studies are required to identify possible genetic risk factors in ME/CFS, as this could improve our understanding and drive…Continue readingGenetic Risk Factors – A Review
Predictors for Developing Severe ME/CFS Following Mononucleosis New research, co-authored by Doctors with M.E. honorary fellow Professor Leonard Jason, attempts to identify why some patients develop severe ME/CFS following Infectious Mononucleosis (IM, Epstein Barr or Glandular Fever) by seeking out possible predisposing risk-factors. Additional gastrointestinal symptoms and abnormal immune markers prior to IM infection appear…Continue readingPredictors for Severe ME/CFS
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