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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 released its 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

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 organic illness with often devastating consequences. It can affect different aspects of life for both people with ME/CFS and their families and carers, including work and education, activities of daily living, family life, social life and emotional wellbeing.…

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ME/CFS: The urgent need for improved generalist medical education

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NICE 2021: A Triumph of Science over Discrimination

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

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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…

Mayo Clinic: ME/CFS Essentials of Diagnosis and Management Consensus Statement

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…

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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…