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
Full text
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
CC:
Emily Arkell
Director of Research & Quality Improvement
RCPCH (by email)
Dr Charles Shepherd
Honorary Medical Advisor
ME Association (by email)
Dr Nina Muirhead
Dermatology Surgeon
Director, Doctors with ME (by email)
Dr. Ben Marsh
Associate
Consultant Paediatrician, Neurodisability Specialist, Clinical Director of Community Paediatrics (Retired)
More NICE ME/CFS Guideline 2021 Content
Striking evidence for how to improve standards of holistic care and service provision The FROM-16 validated quality of life tool is a pragmatic addition to the frontline clinical toolbox, allowing for holistic decision making to be made regarding care and broader service provision. Doctors with M.E. Director Dr. Nina Muirhead presents new findings with her…
Traducido por / Translated by Dr. Esther GarcésDoctors with M.E. Associate, Family Physician and RadiologistMédico especialista en Medicina Familiar y Comunitaria y Médico especialista en Radiodiagnóstico Contenido Descripción General La Encefalomielitis Miálgica (EM) —también conocida como Síndrome de Fatiga Crónica (SFC)— es una enfermedad orgánica crónica, compleja y multisistémica con consecuencias, a menudo, devastadoras. Se…
Psychiatry and Psychology Working GroupDr Crowder BSc (hons) MB ChB FRANZCP, Associate, DwMEYochai Re’em, M.D., Associate, DwME | Website | Twitter What is ME/CFS? ME/CFS is a chronic, complex, multi-system biological illness with often devastating consequences. It affects all age groups including children, and all social classes. About 75% of sufferers are female. It has…
Section 1.16 of the NICE ME/CFS Guideline requires that health and social care providers ensure that all staff delivering care to people with ME/CFS have an understanding of the patient experience. Doctors with M.E. asked the CFS/ME Research Collaborative Patient Advisory Group (CMRC PAG) what patients make of the new NICE guideline. They shared the…
When faced with a life changing, devastating chronic illness with no cure in a young person, doctors often don’t know what to do. Doctors with M.E. has produced guidance for GPs, but what do patients want? We asked patients to share examples of when doctors got it right. It is heartening to read this collection…
Sumber asal diterbitkan dalam Bahasa Inggeris pada 15/1/2022. Diterjemahkan oleh / Translated byDr Hannah Nazri MBChB, BSc (Hons), MSc (Oxon)Doctors with M.E. Associate, clinician scientist, entrepreneur, and women’s rights & education advocate.Instagram | Twitter | LinkedIn | Blog Kandungan Gambaran keseluruhan Myalgic Encephalomyelitis (ME), juga dikenali sebagai Sindrom Kelesuan Kronik (Chronic Fatigue Syndrome – CFS),…
It is widely acknowledged that barriers to good care for ME/CFS patients exist due to the lack of biomarker, disease specific treatments and poor medical education about this disease. There is also inherent cultural bias against invisible illness and illnesses affecting predominantly women. We sought the opinions of 656 volunteers who took the time and…
Publié initialement en anglais le 15/01/2022. Veuillez nous excuser, nous sommes conscients qu’il y a un problème de ponctuation. Nous faisons notre maximum pour le résoudre au plus vite. Traduit par Millions Missing France Contenu Vue d’ensemble L’encéphalomyélite myalgique (EM), également connue sous le nom de syndrome de fatigue chronique (SFC), est une maladie biologique…
We are pleased to announce that the M.E. (Myalgic Encephalomyelitis) Educational Webinar Series organised by partner organisation Hope 4 ME & Fibro Northern Ireland and hosted by the Health and Social Care Clinical Education Centre of Northern Ireland is now available for public viewing. Featuring experts and speakers from Hope 4 ME & Fibro N.I.,…
Contents Overview Myalgic Encephalomyelitis (ME), also known as Chronic Fatigue Syndrome (CFS), is a chronic, complex, multi-system biological illness with often devastating consequences. It affects all age groups including children and all social classes. About 75% of sufferers are female. It has a worse quality of life score than many other serious illnesses including cancer,…