“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
Introduction
Dr Ben Marsh is a patient representative on the JLA Priority Setting Partnership Steering Group and was a consultant paediatrician before being diagnosed with ME/CFS.
“My name is Ben, I developed ME, following an episode of Viral Pericarditis in 2017. Due to the impact of the condition, I have had to give up work as a Consultant Paediatrician with specialisation in Neurodisability and Clinical Director of Community Paediatrics at a large city hospital trust. I also have a degree in Psychology.
“During my practice I was trained in and engaged in a range of clinical, scientific, and qualitative research and always aimed for best evidence, best practice. I hope to bring experience as a doctor and as a patient with now Moderate ME, who has engaged with current recommended therapies, to the Steering Group.”
Dr Ben Marsh
He has written to the President of The Royal College of Paediatrics and Child Health (RCPCH) to ask why it supported the delay in publication of the long-awaited NICE guideline for ME/CFS and with his permission, we have reproduced the letter below.
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.
Yours Sincerely,
Ben
Dr Ben Marsh MBBS BSc(hons) MRCPCH