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 is an opportunity for doctors, practitioners and patients to come together to develop more concordant and productive relationships.”
“The commercial opportunities and implications are also notable, not least for the pharmaceutical and financial services industries.”Doctors with M.E.
We are delighted that the new NICE guideline on ME/CFS has been published. Doctors with M.E. considers the launch of this guideline to be a watershed moment in the history of ME/CFS medical care in the UK, with implications that extend to those Long Covid (PASC) patients who also meet ME/CFS diagnostic criteria. The new guideline discards discredited psychological theories and therapies in favour of a more patient centred approach, driven by improved scientific understanding. It 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 is an opportunity for doctors and patients to come together to develop more concordant and productive relationships, whereby GPs and specialists are supported in offering early diagnosis, relevant investigations, symptom treatment and compassionate care. Misdiagnosis and delays should cease to occur. Harmful Graded Exercise Therapy is discontinued and must not be replaced with renamed or rebranded versions, which would be clinically, scientifically and legally unsustainable. Accounting for systemic exertion intolerance and post exertional symptom exacerbation is at the heart of the science and the new guideline. Work must now begin to:
- Remove outdated and erroneous educational material or policies which contain discredited theories and harmful recommendations
- Develop curriculums and educational material which reflect scientific knowledge
- Training and education to bring clinicians and practitioners up-to-date
- Restructure, commission and/or redesign health care services to properly meet the needs of ME/CFS patients
- Provide adequate social care
- Provide appropriate accommodations at work and in educational settings
We extend our thanks to NICE and to the ME/CFS Guideline Development Committee. Doctors with M.E. stand ready to work with partners and organisations to make all this a reality. There is a long way to go and significant funding, resources and culture change will be needed but at long last, the right care and support for people living with ME/CFS is on the horizon.
Our experts’ comments
“NICE are to be commended for ensuring that this new guideline is based on a rigorous assessment of relevant clinical research. NICE’s verdict on behavioural treatments for ME amounts to nothing less than an utter repudiation. That it comes from an authoritative agency and is based on a thorough empirical review is extremely significant. I hope this updated evidence-based NICE guideline will usher in a new era of clinical practice: one where we follow the science, where clinicians are empowered to challenge bad practice and weak research, and, most importantly, where patients are listened to, respected, and treated with the dignity they deserve.”Prof. Brian Hughes, Honorary Fellow, Doctors with M.E.
Prof. Brian Hughes
Professor of Psychology, Specialist, Evidence-Based Policy and Empiricism, National University of Ireland, Galway, Member, HSE (Ireland) National Working Group on ME, Science Advisory Board, DecodeME, Scientific Advisor, Hope 4 ME & Fibro Northern Ireland, Chair, Global Research Initiative, International Prader-Willi Syndrome Organisation
“I have had the privilege of meeting many people with severe ME/CFS in the homes, rooms and beds to which their disease confines them. They have shared with me the despair of living with the stigma of a disease which may alienate them from friends, families, and the medical services which should support them. To get an idea of the person within, who may barely be well enough to communicate, I have taken cues from photos taken before the onset of ME/CFS, while others have been able to articulate the dreams of those things they would do if not constrained by their bodies.
The guideline recognises that people with ME/CFS may have experienced prejudice and disbelief from people who do not understand their illness. It makes it clear that people with severe ME/CFS, whose needs are both complex and diverse, need multidisciplinary input and care coordination, and this may require regular home visits. Key to the successful implementation of this new guideline will be primary care practitioners working within multidisciplinary teams with expertise in ME/CFS. Practitioners should be guided by continuing input from people with the disease, so that future services fully meet the needs of people with ME/CFS, particularly those most severely affected. The guideline promises that people with ME/CFS will be treated with respect and compassion, ensuring that the care they receive is safe and of the highest standard, and is delivered appropriately according to the needs of the individual.“Caroline Kingdon, Doctors with M.E. Honorary Fellow, NICE ME/CFS GDC Full Committee Member
Research Fellow, Centre for the Evaluation of Public Health Interventions, Faculty of Infectious and Tropical Diseases, London School of Hygiene and Tropical Medicine, Lead, UK ME/CFS Biobank, [email protected], Committee Member, NICE ME/CFS Guideline Development Committee, Registered Nurse
“As I first highlighted in 2011, in a paper which collated data from a number of countries, ME/CFS patient surveys have consistently found harms associated with graded exercise therapies and to a lesser extent, CBT. In a subsequent paper, I was part of the team that reported that the English NHS ME/CFS services placed little or no focus on the potential for treatment-related harm in their written information for patients and for staff. The lack of focus on harms within such services, combined with a lack of formal UK ‘yellow card’ surveillance for nonpharmacological interventions, led to a perfect storm of not picking up on adverse events associated with such therapies, despite accumulating patient reports of harm. This blind spot was also fed by testimonial injustice, where patients with ME/CFS have had difficulty having their experiences listened to and believed. It is to be hoped that, with the new guidelines, fewer patients will be harmed by such graded activity approaches with more care being taken to ensure patients are remaining within their energy envelopes.”Tom Kindlon, Honorary Fellow, Doctors with M.E.
Independent Researcher, Assistant Chairperson, Irish ME/CFS Association, twenty six peer-reviewed journals publications, inc. co-author of ground-breaking research revealing the lax state of medical norms and the very low quality of the underlying research
“On the back of the NICE review of ME/CFS treatments and patient care it is important sustainable funding is now provided for research. A dysbiotic microbiome, evidence of low grade infection, energetic failure, autonomic dysfunction have emerged as components of ME/CFS. Larger more in depth patient studies are now required with substantial government funding. Studies should not be carried out in isolation but in combination with other similar patient groups including Long Covid, Chronic Lyme Disease and Fibromyalgia. Long term investment in both patients and researchers is needed if we are to unravel these complex conditions.”Dr. Karl Morten, Honorary Fellow, Doctors with M.E.
Dr. Karl Morten
Director and Mitochondrial Scientist, Morten Group – Oxford, Director of Graduate Studies, Nuffield Department of Obstetrics and Gynaecology, John Radcliffe Hospital, Oxford University
“People with ME have had to live with a NICE guideline for almost 15 years that was unfit for purpose – because it recommended treatments that were either ineffective or harmful. After a very through review of all the evidence – from clinical trials, experts and patients – we now have a new guideline that has reversed these recommendations and should be widely welcomed by people with ME.
The next challenge involves educating and training all health professionals on how to diagnose and manage ME and setting up a full network of hospital-based referral services where GPs can refer for further help.”Dr. Charles Shepherd, Honorary Fellow, Doctors with M.E.
Dr. Charles Shepherd
Honorary Medical Adviser to the UK ME Association, Frequent government advisor, Co-author, Leading ME Clinical Reference Book, Committee Member, NICE ME/CFS Guideline Development Committee
“For many years severely affected ME sufferers have known that CBT and GET are not magic cures, as if they were, everyone would have been cured and there would be have been no controversy.
As a paediatrician who has had to defend many innocent families of children and young persons with ME from safeguarding proceedings, I hope that the guidelines will finally put a stop to this injustice, and that no longer will young people with ME be labelled as having “Medically Unexplained Symptoms” or being “Perplexing Presentations” as an excuse to refer to social services. Children and young people with ME deserve a firm positive diagnosis from their paediatricians. This will protect them from undue pressures, and lead to appropriate support and help.”Dr. Nigel Speight, Honorary Fellow, Doctors with M.E.
Dr. Nigel Speight
Paediatric Physician, Co- Author, International Consensus Criteria, Co-Author, Pediatric Primer in Frontiers in Pediatrics, Advisor, 25% ME Group, Researcher
“The Guideline should drive better acceptance of ME as a serious medical condition and encourage doctors to personalise care based on individual needs. It is a real opportunity for doctors to transform the care patients receive.”Dr. David Strain, Honorary Fellow, Doctors with M.E.
Dr. David Strain
Long Covid Lead and Co-Chair Medical Academic Staff Committee, British Medical Association, Medical Advisor, Action for ME, Senior Clinical Lecturer, University of Exeter, Honorary Consultant, UK NHS
“Sanity prevails”Dr. William Weir, Honorary Fellow, Doctors with M.E., NICE ME/CFS GDC Full Committee Member
Dr. William Weir
Infectious Disease Physician, Harley Street, London, Retired NHS Consultant, Royal Free Hospital, Committee Member, NICE ME/CFS Guideline Development Committee, Researcher
“As a patient with Long Covid and ME, and also as an advocate for both patient communities, I welcome the removal of Graded Exercise Therapy from the 2021 NICE guideline on Myalgic Encephalomyelitis. Finally, science has prevailed and the patient voice has been listened to. Hopefully, the neglect and abuse of patients with this debilitating condition will stop. It is imperative that clinicians dealing with these patients receive appropriate education and training, and that the medical school curriculum is revised to include post viral illnesses with emphasis on their biomedical nature. It is no longer acceptable for these conditions to be labelled as psychological. Indeed it never was, but the views of powerful influencers within the establishment have held patients and clinicians to ransom.
Now we can put those days behind us, advance the care of patients with ME, and conduct meaningful research into causes and treatments. There has never been a greater urgency to do this, given the looming spectre of hundreds of thousands of Long Covid sufferers developing ME.”Dr. Asad Khan, Associate, Doctors with M.E.
Dr. Asad Khan
Consultant in Respiratory Medicine, Sleep and Long-Term Ventilation, Manchester University Hospitals, Fellow, Royal Australasian College of Physicians, Fellow, Royal College of Physicians of Edinburgh, PGCertClinEd (Auckland)
“The publication of the new NICE guideline for ME/CFS is really good news for children and families now and in the future affected by this cruel illness. Good sense and good science has prevailed to remove ineffective & harmful treatments and focus on understanding and supporting young people with this ghastly disease.
It is so important that professional bodies now concentrate on helping doctors and health care professionals adapt their clinical practice to incorporate the new comprehensive and evidence based guideline as developed.“Dr. Ben Marsh, Associate, Doctors with M.E.
Dr. Ben Marsh
Consultant Paediatrician, Neurodisability Specialist, Clinical Director of Community Paediatrics (Retired)
“The removal of Graded Exercise Therapy as a recommended treatment for patients with ME is a momentous step in the right direction. I share the relief of the scientists, people living with ME, and patient support groups, who have advocated for management of people with ME to be appropriate, safe, and evidence-based. They have now had their concerns recognised by NICE. Let us now hope the medical community will align care for patients with ME with this updated NICE guideline, move away from the notion that this physical illness can be treated by behavioural or psychological therapies, and turn their focus to biomedical research, ultimately leading to medical treatments. Furthermore, Long Covid causes many to experience chronic post-viral fatigue and Post Exertional Malaise, in common with people with ME. People living with Long Covid, and all healthcare professionals, must therefore be aware of this important change in guidance on managing ME, which is highly relevant to Long Covid.”Dr. Shaun Peter Qureshi, Associate, Doctors with M.E.
Dr. Shaun Peter Qureshi
Palliative Medicine Physician, BSc(Hons), MBChB, MD, MRCP(UK), Previously Clinical Fellow in Medical Education, University of Edinburgh
“The official removal of Graded Exercise Therapy as treatment for ME/CFS is an important moment in UK history. It is a long overdue recognition of the harms of this therapy which is based on unfounded theories of patient beliefs causing illness.
Talking therapies which help patients cope with the losses and limitations of chronic illness are also not curative and cannot be based on the unfounded beliefs of the past. To ignore this scientific fact would amount to unlawful medical gaslighting.
Now proper funding and resources must be made available in order that services which properly meet the needs of ME/CFS patients are developed, including the provision for greater access such as telephone or video consultations, home visits and proper accommodations when patients are admitted to hospital. Doctors with M.E. stand ready to help health care providers develop such services.”Dr. K.N. Hng. Founder, Doctors with M.E.
Dr. K.N. Hng
ST7 General Internal Medicine and Gastroenterology (Ret)
Author of ‘Doctor with M.E.: My journey with “Chronic Fatigue
“The 2021 NICE guidelines are an exciting opportunity for medical educators. Now is the time to review and re-write ME/CFS teaching materials, and take down harmful theories that ME/CFS patients can cure themselves by controlling their thoughts and feelings and/or by undergoing graded exercise therapy. The scientific research and patient narrative will shape new evidence-based medical education as the paradigm shift gains momentum. Clinicians can avoid patient harm by improving ME/CFS recognition and support.
My advice following the 2021 ME/CFS guidelines: listen to and believe in your patient, make a diagnosis, provide accessible, supportive, compassionate care and keep up-to date with education.”Dr. Nina Muirhead, Director, Doctors with M.E.
Dr. Nina Muirhead
Dermatology Surgeon, Chair of CFS/ME Research Collaborative Medical Education Working Group, Forward ME representative, Expert Witness, UK National Institute of Health and Care Excellence.
“Scientists must continue to research the biological facets of this disease, including causes and bio-physiological dysfunction brought about by ME/CFS. Whilst this work is ongoing, doctors and allied health professionals must look to support patients manage and ameliorate symptoms.
This new guideline marks a departure from biopsychosocial outdated models of ME/CFS to one that recognises the clinical features of this disease, its impact on people living with ME/CFS and the importance of doctors and patients working collaboratively to achieve the best outcomes possible.”Dr. Keith Geraghty, Director, Doctors with M.E.
Dr. Keith Geraghty
Honorary Research Fellow, Centre for Primary Care and Health Services Research, Faculty of Biology Medicine and Health, University of Manchester, Co-lead, NICE GDG commissioned Severe ME Research Group
“The lack of controversy in the science was a given, unless we debase the definition of science. We welcome that UK medical guidelines now account for the legal centrality of the demonstrable scientific consensus, formal disease classification and all of their medico-legal compliance implications. The commercial implications and opportunities are also notable, not least for the pharmaceutical industry.
The catchup of medical belief systems, norms and professional standards with the science will reverberate globally and across industries. Including within the indemnity, life, critical illness and health insurance sectors. The practical and legal impact of this on employment, social work and education contexts also cannot be underestimated. We stand ready with our partners in this unusually clear legal and scientific context to offer simple solutions to all stakeholders and each of their organisational departments.“Dr. Richard Ramyar, Chair and Strategy Advisor, Doctors with M.E.
Dr. Richard Ramyar
Chair and Strategy Advisor
Strategy, Policy and Compliance Consultant, Financial Economist, Technologist and Visiting Scholar at the London Institute of Banking and Finance
Press releases and detailed media response
As a proud member organisation of Forward ME, Doctors with M.E. are co-authors of the following distributed press releases and detailed response.
Compliant educational resources can be found in our Education section, including CPD resources.
individual cases globally (pre pandemic)
Long Covid prevalence rates that meet ME diagnostic criteria are not yet quantified
healthcare worker cases globally (pre pandemic)
Long Covid prevalence rates that meet ME diagnostic criteria are not yet quantified
article assessment corroborating regulatory failure of medical norms
US Institute of Medicine assessment of ME systemic exertion intolerance
regulatory failure of medical norms
BPS papers ranked 87% very low quality, 13% low quality in UK NICE assessment
More NICE ME/CFS Guideline 2021 Content
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.…
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…
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…
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…
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…
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,…
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…
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 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…
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…
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…
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…
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…
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…
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…
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…
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…
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…