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 role in recent unprecedented interventions, which have prominently undermined a multi-year and rigorously evidence based NICE process. The RCPCH’s pursuit of a delay in publication of the long-awaited NICE guideline for ME/CFS comes in the face of sufficient evidence of harm and the scientific consensus.
“For the college to be so prominent in seeking and supporting such an unprecedented step, of undermining a robust, thoroughly developed, evidence reviewed guideline, without any public explanation or statement is concerning…” .Dr. Ben Marsh, Doctors with M.E. Associate, Neurodisability Paediatrician
12th October 2021
Dear Dr Kingdon,
Re: RCPCH response to new NICE ME/CFS guideline
I am writing today, as a RCPCH member, to ask for clarity and transparency from the college, with regards to their input to and media communications regarding the new NICE guidelines for ME/CFS.
As you know, these were due for publication in August, the publication date was then ‘paused’ after the RCPCH and others contacted NICE. The reasons for this request have not been publicly explained.
At the time of the ‘pause’ to the publication of the guideline, the RCPCH was publicly and prominently enthusiastic about the delay, quoted in the Guardian, BBC and elsewhere, including the Times only last week, as being, “very pleased” about the pause.
There was a lack of any formal statement or even official acknowledgement of the pause or any explanation of the pleasure in the pause, released or on the RCPCH website, unlike the Royal Colleges of Physicians.
With an apparent lack of wide consultation on the RCPCH position regarding the draft guidelines released in November 2020 and the only link to information on ME/CFS on the RCPCH website being to the 2007 guidelines, I am concerned and requesting clarification as to how the college came to and acted so strongly on, an opinion on the draft guidelines that warranted a request to stop their publication.
The NICE guideline was produced following a three year process, informed by extensive review of scientific evidence, using the same rigorous methodology as all their other guidelines and hearing from many stakeholders (including RCPCH) to produce a new, more evidence based guideline.
However, in an extraordinary deviation from due process and its own clear procedures, just hours before publication, the release was ‘paused’, due to representations made by RCPCH and others.
For the college to be so prominent in seeking and supporting such an unprecedented step, of undermining a robust, thoroughly developed, evidence reviewed guideline, without any public explanation or statement is concerning.
Surely medical advice and recommendations must follow robustly reviewed evidence and not be influenced by individual practitioners’ opinions? As well as prolonging the use of therapies now adjudged to be unhelpful and, in some cases, reportedly harmful, the delay in publication of the guideline has undoubtedly had an impact on children and their families already affected and in some cases reportedly worsened by them.
The lack of any formal or detailed statement, or explanation of the RCPCHs actions has sadly only added to the impact on children and their families. The matter was also raised in the House of Lords on 12th October.
NICE have organised a ‘roundtable’ discussion on 18th October, with the aim of ‘reaching a swift decision on the future publication of the guideline’ and ‘to ensure that the final guideline will be effectively implemented across the system’ (NICE statement of 12th October). I understand this includes the college, I request that the RCPCH aims to be more open, clear, and transparent with regards to their objections to the guideline and evidence supporting them.
Please could I also ask for consideration that the colleges aim should be to publicly support and maintain confidence in the NICE process, support publication and focus on helping paediatricians and allied health professionals in this area adapt their clinical practice to incorporate the new comprehensive and evidence based guidelines as developed.
Dr Ben Marsh MBBS BSc(hons) MRCPCH
Director of Research & Quality Improvement
RCPCH (by email)
Dr Charles Shepherd
Honorary Medical Advisor
ME Association (by email)
Dr Nina Muirhead
Director, Doctors with ME (by email)
Dr. Ben Marsh
Consultant Paediatrician, Neurodisability Specialist, Clinical Director of Community Paediatrics (Retired)
More NICE ME/CFS Guideline 2021 Content
Doctors with M.E. stands ready to work with partners and organisations to bring medical education up-to-date and assist in developing the right services for ME/CFS patients. “The new guideline represents a positive and total paradigm change, uniting around the science, official disease classification and medico-legal compliance implications.” “This translation of scientific knowledge into clinical practice…
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…
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…
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…
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…
This comprehensive article, co-authored by Doctors With M.E. Honorary Fellows, Dr. Lucinda Bateman and Professor Anthony Komaroff, summarises best clinical practice recommendations for generalist and specialist health care providers treating adults affected by ME/CFS. The article covers epidemiology, prognosis, etiology and pathophysiology, diagnostic approach with new diagnostic criteria, and management of ME/CFS. The clinicians behind…
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…
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…
Your questions regarding the new NICE Guideline announcement this week have been broken down and addressed by Doctors with M.E. Honorary Fellow, Professor Brian Hughes: 1. What’s going on? 2. How is the new guideline different to the old one? 3. Why is the new guideline being welcomed? 4. Why was the old guideline problematic?…
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…