2021 Compliance News NICE 2021 Opinion Policy Positions Press Releases

The NICE debacle – will NICE survive?

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 such behaviour and accommodations of low standards is in keeping with discriminatory and other unlawful norms in this field. However neither flawed education, guidelines, policy nor ignorance constitute a sustainable defence in this industrialised field of unlawful decision making.

There is no legitimate reason for any further discussion before publication of guidelines which have been formulated through an unusually thorough scientific review process.  ME/CFS professionals and  patients are being held hostage and forced to participate in a highly opaque “roundtable” of questionable purpose, with publication of the completed new ME/CFS guideline conditional upon it.  The grave concern is that a less than satisfactory outcome will be rubber stamped at some unknown point in this process, with claims that scientifically informed professionals and patients have been listened to. In contrast to the meticulous scientific review that came before, and in violation of NICE’s own guiding principles, the lack of transparency in this roundtable process is glaring.

An outlier on the global scientific stage

The new ME/CFS guideline’s removal of Graded Exercise Therapy as a treatment for ME/CFS and downgrading of Cognitive Behavioural Therapy to a supportive role only would bring the UK into step with global best practice and scientific consensus, as outlined by bodies such as the Mayo Clinic, the US IoM/NAM and others.  This progress now risks being derailed by NICE bowing to pressure from establishment bodies.

With continuing scientific advancements, alternative guidelines and educational resources being produced globally, NICE’s failure to immediately publish the findings of its own scientific review stands out.  In the week that NICE “paused” publication of its new ME/CFS guideline, the International Association for CFS/ME (IACFS/ME) held its conference, discussing the latest scientific knowledge in the field, further underscoring the distance between parts of the UK medical establishment and deepening scientific consensus.  A week after the “pause”, the Mayo Clinic Proceedings published the US consensus recommendations, firmly putting psychological and exercise treatments for ME/CFS in the dustbin of history.  Respected scientific coalitions such as the U.S. ME/CFS Clinician Coalition and the European Network on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (EUROMENE) have their own guidelines on ME/CFS, and good quality educational resources are provided by the Bateman Horne Center and the Workwell Foundation, to name but a few. 

“It is time for the UK to join the rest of the scientific community.”

Doctors with M.E. Honorary Fellow Anthony Komaroff of Harvard Medical School summarises the scientific understanding in his JAMA article “Advances in Understanding the Pathophysiology of Chronic Fatigue Syndrome”, while the journal Medicina is producing a special issue on “ME/CFS: Causes, Clinical Features and Diagnosis” which includes articles by Doctors with M.E. Board members and Honorary Fellows.  In exasperation at NICE’s unscientific behaviour, Dr. Ron Davis, founding father of the Human Genome Project and Chair of the Open Medicine Foundation’s Scientific Advisory Board questions NICE’s credibility and comments, “It is time for the UK to join the rest of the scientific community.”

No concern for public safety

NICE’s disregard for patient safety has already caused Doctors with M.E. to call for its replacement and its functions to be merged into the MHRA, to form a new “Medical Regulator”. NICE’s flawed 2007 guideline remains in place while the new one is unpublished, NICE having previously resisted loud calls to withdraw it, or even to suspend the most harmful parts of its recommendations. Sufficient evidence of harms in CFS clinics throughout the country remain unaddressed while NICE delays the publication of its new guideline.  That NICE would allow risks of harm to continue unabated even a day longer than planned was already legally questionable in public health and personal injury terms; it is now further questionable in procedural terms. It is our view that large portions of the 2007 guideline must be ignored as a function of law, due to the unlawful clinical judgement that it directly and indirectly underwrites.

Credibility in the balance

If NICE capitulates to the insistent blind spots of contra-scientific vested interests and further undermines its own scientific review, it not only makes a mockery of the years of hard work, scientific rigour and discipline by its ME/CFS Guideline Development Committee, it also: 

  • chooses low standards, miseducation and discrimination over science,
  • compromises its objectivity and independence,
  • loses credibility,
  • brings UK medical regulation into disrepute,
  • fails in its remit of “producing evidence-based guidance and advice”,
  • raises questions on the point of its scientific review process,
  • and by extension its existence as a government agency.

“With the world watching, NICE would be wise to take stock and consider which side of the science vs. discrimination conflict it stands for.”    

Doctors with M.E. repeats its call for NICE’s incorporation into the MHRA to form a new regulator.  This would allow proportionate and reasonable safety standards to be applied to non-pharmacological therapies, at long last safeguarding not just ME/CFS patients but all patients including Long Covid patients, from misguided assumptions of safety until proven otherwise coupled with zero surveillance for harm.  The new ME/CFS guideline must not be altered or its publication cancelled or further delayed, or NICE risks all the above consequences.  With the world watching, NICE would be wise to take stock and consider which side of the science vs. discrimination conflict it stands for.

More NICE ME/CFS Guideline 2021 Content

Rights and Obligations in ME/CFS: Overcoming normalised disregard for standards

Doctors with M.E. proposes a simple solution to ensure success of the UK’s ME/CFS Delivery Plan. Following the then Secretary of State for Health and Social Care Sajid Javid’s announcement of a cross-nation delivery plan for ME/CFS, work has been underway at the Department of Health and Social Care to identify issues and find solutions.…

Normalised Medical Rule Breaking and the UK DHSC ME/CFS Review

Replacing Working Group Glass Ceilings with Enforceable Minimal Standards (clickable video chapters below and on YouTube site) Further to our recent statement regarding major UK announcements, the above presentation provides the solution to concerns about new DHSC ME/CFS Delivery Planning mechanisms and final implementation. Current glass ceilings will limit success of this new process and…

BMJ Rapid Response on Unpaid Carers

Doctors with M.E Director and colleagues respond regarding the ignored importance of unpaid carers Doctors with M.E. Director, Dr. Nina Muirhead, has co-authored a BMJ Rapid Response regarding the topic of unpaid carers of people with ME. This important factor is largely ignored by the 2021 NICE ME/CFS Guidelines, the recent APPG report and the…

Statement on UK DHSC Announcements and the APPG Rethinking ME Report

Doctors with M.E. warmly welcomes the UK Secretary of State for Health and Social Care’s recent inauguration of cross-nation delivery planning processes with his Chief Scientific Officer, Professor Lucy Chappell. Sajid Javid’s intervention on social media in the case of Maeve O’Neill was strikingly poignant, touching the hearts of many patients, carers and medics. We…

ME/CFS: What Psychiatrists need to know

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…

Getting compliant with NICE guideline – the patient experience requirement

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…

What does good practice look like? Patients chip in

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…

Putting it into Practice: What NICE ME/CFS means for GPs

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,…

NICE 2021: A Triumph of Science over Discrimination

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…

DwME recognises research scientist Caroline Kingdon with post-viral clinical expert Dr. William Weir

Doctors with M.E. recognise the contributions to clinical practice, research literature and scientific innovation of our latest Honorary Fellows, Caroline Kingdon and Dr. William Weir. Their contributions have accelerated the quality of empirical work and grounded the literature in frontline clinical relevance. This experience has most recently culminated in their roles as full Committee Members…

girl leaning her head on her hand while closing her eyes

Public Letter to RCPCH: DwME Associate and Neurodisability Paediatrician Dr. Ben Marsh calls for explanation

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…

Doctors 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. 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…

Global scientific communities and clinicians urge NICE to publish ME/CFS guideline now

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…

BBC Radio 4: Doctors with M.E. feature on flagship Woman’s Hour

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…

bridge over river in city

Public Letter to DHSC, MHRA, HoC, NICE: Call for a ‘Medical Regulatory Agency’

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…

Rapid Response and Expert Comment: NICE Guideline Delay and Accommodation of Unlawfulness

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…


Revisiting 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 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…

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Revisiting NICE Expert Testimony on ME/CFS education and training: Dr. Nina Muirhead

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…

Honorary Fellow comments on the BMJ and NICE Guideline Committee Resignations

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…

DwME joins call for NICE to maintain scientific process

Further to our position statement on the 2021 NICE guideline update, Doctors with M.E. has joined the call for NICE to ensure that unconsulted changes are not injected, as these would avoid scrutiny by the scientific community. DwME considers the 2021 NICE guideline to be a watershed moment in the history of ME/CFS medical care…

Position Statement: 2021 NICE Guideline Update

On the 10th of November 2020, the National Institute for Health and Care Excellence (NICE) published its draft updated guideline on the diagnosis and management of myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome (ME/CFS). NICE has updated its 2007 recommendations on the use of psycho-behavioural treatments for ME/CFS, concluding that Graded Exercise Therapy (GET) should no…