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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 longer be offered to patients and that Cognitive Behavioural Therapy (CBT) is not a treatment or cure for ME/CFS.

Doctors with M.E. (DwME) welcomes and supports this change in treatment recommendations, and we await publication of the final guideline in August 2021. NICE undertook an extensive evidence review and consultation process that involved a wide range of stakeholders, including many clinical experts and patient groups. DwME fully supports NICE’s decision to no longer recommend GET as treatment for ME/CFS. Unstructured exercise or exercise programmes developed for the rehabilitation of patients with other conditions are also not recommended. There is now considerable evidence showing that GET is an ineffective treatment for ME/CFS. Furthermore, there is widespread evidence that GET is harmful – ME/CFS patients suffer a worsening of symptoms and/or chronic deterioration in disease severity after undertaking GET.

We concur that CBT is not a treatment or cure. Psycho-behavioural therapies are premised on a refuted model in which ME/CFS is the result of patients holding on to ‘false illness beliefs’ and is perpetuated by patient’s ‘fear avoidance of exercise’. This ‘biopsychosocial model’ of ME/CFS has arguably led to decades of acrimony between the medical professionals who advocate this approach and patients, which has caused considerable distress to many people living with ME/CFS worldwide. Current scientific understanding demonstrates that ME/CFS is a complex multi-system biological disease that profoundly impacts the lives of sufferers, causing disabling symptoms such as extreme fatigue, pain, cognitive impairment, orthostatic intolerance, sleep disturbance and post- exertional malaise (PEM) /post-exertional symptom exacerbation (PESE). Many patients with the disease stop seeing doctors after encountering disbelief and lack of understanding.

DwME considers the 2021 NICE guideline to be a watershed moment in the history of ME/CFS medical care in the UK. The new guideline supports a change in ME/CFS treatment towards evidence based foundations, away from psychological therapies and adopting a more physiological and patient-centred approach. There is an opportunity for doctors and patients to come together to develop more concordant and productive relationships, whereby GPs and other specialists are supported in offering symptom treatment and compassionate care to people living with ME/CFS.

The removal of GET as a recommended treatment and the downgrading of CBT to being no more than a supportive therapy paves the way for a new era in ME/CFS scientific inquiry and improved clinical care. The Covid-19 pandemic has demonstrated in stark terms that viral illnesses can result in post-viral syndromes that linger for long periods and debilitate patients. There has been huge demand for appropriate ‘Long COVID clinics’ laying bare the gaps in the existing model of care and the shortcomings of psycho-behavioural therapies. DwME will be monitoring research developments in this field. We hope that improved understanding of Postacute COVID-19 Syndrome or ‘Long COVID’, together with the revised NICE guideline for ME/CFS, will act as an impetus for funding bodies to support more high quality biomedical ME/CFS research studies and improved clinical care.

More NICE ME/CFS Guideline 2021 Content

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…

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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…

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…

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…

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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…

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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…