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…Continue readingPublic Letter to RCPCH: DwME Associate and Neurodisability Paediatrician Dr. Ben Marsh calls for explanation
Tag: NICE 2021
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…Continue readingThe NICE debacle – will NICE survive?
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…Continue readingDoctors with M.E. Honorary Fellow and founding father of the Human Genome Project comments on the NICE pause – “it is time for the UK to join the rest of the scientific community”
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…Continue readingGlobal scientific communities and clinicians urge NICE to publish ME/CFS guideline now
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…Continue readingBBC Radio 4: Doctors with M.E. feature on flagship Woman’s Hour
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…Continue readingPublic Letter to DHSC, MHRA, HoC, NICE: Call for a ‘Medical Regulatory Agency’
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
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…Continue readingHonorary Fellow comments on the BMJ and NICE Guideline Committee Resignations