NICE has today (10 November 2020) published its draft updated guideline on the diagnosis and management of myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome (ME/CFS).
The draft guideline recognises that ME/CFS, which is estimated to affect over 250,000 people in England and Wales, is a complex, multi-system, chronic medical condition where there is no ‘one size fits all’ approach to managing symptoms. It stresses the need for a tailored, individualised approach to care that allows joint decision making and informed choice.
Because of the harms reported by people with ME/CFS, as well as the committee’s own experience of the effects when people exceed their energy limits, the draft guideline says that any programme based on fixed incremental increases in physical activity or exercise, for example graded exercise therapy (GET) should not be offered for the treatment of ME/CFS.
Instead, it highlights the importance of ensuring that people remain in their ‘energy envelope’ when undertaking activity of any kind and recommends that a physical activity programme, in particular, should only be considered for people with ME/CFS in specific circumstances.
The draft guideline also emphasises that cognitive behavioural therapy (CBT) it is not a treatment or cure for ME/CFS. However, as a supportive therapy which aims to improve wellbeing and quality of life, the draft guideline says CBT may be useful in supporting people who live with ME/CFS to manage their symptoms.
Paul Chrisp, director of the Centre for Guidelines at NICE, said: “ME/CFS can cause profound, long-term illness and disability, and much of the distress surrounding it is caused by difficulties in recognising, acknowledging and accepting the condition and its impact. This has been compounded further by a lack of effective treatments, wide variation in access to services, and by controversy over the use of graded exercise therapy and CBT that has served only to alienate many people with ME/CFS and in some cases undermine the confidence of those caring for them.
“The recommendations in this draft guideline have been developed by an independent committee that was guided not just by the clinical evidence, but also by the experience and testimony of people with ME/CFS. The result is a guideline that will provide much needed clarity, set new standards for health professionals and ensure that people with ME/CFS have access to the right care and support.”
Adam Lowe, a lay member of the guideline committee, said: “ME/CFS patients have been voicing their concerns about graded exercise therapy for a long time, and the evidence presented to the committee supported these concerns.
“One of the key points in the draft guideline is that exercise is not a treatment or cure for ME/CFS and should not be presumed to be safe for those with this disabling and often neglected illness. The approach it recommends is a pragmatic one which allows patients to self-manage themselves, within their daily limits, while using readily available interventions to address the most serious of their symptoms first.”
The draft guideline recommends reducing the time from 4 months to 3 months that a person needs to have persistent symptoms before a diagnosis of ME/CFS can be confirmed. It says that people should then be directed to a specialist team (in the case of children this should be a paediatric specialist team) experienced in the management of ME/CFS to confirm their diagnosis and develop a personalised management plan. This will enable people to access care earlier and could potentially improve longer term outcomes.
Press Release 22.06.20
Funding for the world’s largest genetic study into myalgic encephalomyelitis (ME), led by a partnership of patients and scientists, has been announced today.
Despite its high cost to patients, the economy, the NHS and society, very little is known about the causes of ME, also diagnosed as chronic fatigue syndrome (CFS, or ME/CFS), including how to treat it effectively.
Now, thanks to £3.2 million funding, awarded jointly by the Medical Research Council and National Institute for Health Research, work can begin on DecodeME, the ME/CFS DNA study that hopes to reveal the tiny differences in a person’s DNA that may affect their risk of developing ME/CFS, and the underlying causes of the condition.
DecodeME will look at samples from 20,000 people with ME/CFS, in the hope that the knowledge discovered will aid development of diagnostic tests and targeted treatments.
ME/CFS affects an estimated 250,000 people in the UK, of all ages, and from all social and economic backgrounds. Post-exertional malaise, an adverse reaction to levels of exertion that many might consider trivial, is often considered to be the defining symptom - this can leave patients suffering from symptoms including extreme levels of fatigue, pain, inability to process information, and light and noise sensitivities. One in four people with ME/CFS are so severely affected they are house- and frequently bed-bound.
Andy Devereux-Cooke, one of the patients leading DecodeME, says: “As someone living with ME/CFS, I'm well aware that the patient community has waited a long time for a study such as this one that has such a strong, genuine element of patient involvement. All of us involved with this research project hope that it can start to address the totally unwarranted stigma and lack of understanding that so many patients with ME/CFS face on a daily basis."
Partnering with the MRC Human Genetics Unit at the University of Edinburgh and the London School of Hygiene & Tropical Medicine, it’s being led by the ME/CFS Biomedical Partnership. This collaboration of researchers, people with ME/CFS, carers and advocates has grown out of the UK CFS/ME Research Collaborative (CMRC), established in 2013 by Prof Stephen Holgate, MRC Clinical Professor of Immunopharmacology at the University of Southampton.
Principal Investigator Prof Chris Ponting, MRC Human Genetics Unit, University of Edinburgh, says: “Our focus will be on DNA differences that increase a person’s risk of becoming ill with ME/CFS. We chose to study DNA because significant differences between people with, and without, ME/CFS must reflect a biological cause of the illness. It is our hope that this study will transform ME/CFS research by injecting much-needed robust evidence into the field.”
People with ME/CFS across the UK will be asked to volunteer to take part in DecodeME, which they can do from home, confirming they meet the selection criteria via a patient questionnaire already being used by the CureME Biobank. Participants will be mailed a collection kit and asked to send back a saliva or “spit-and-post” sample. These will be compared with samples from healthy controls.
Sonya Chowdhury, Chief Executive, Action for M.E., and Chair of the study Management Group, says: “Simply put, we cannot do this without the determination and support of people with ME/CFS. Recruiting the 20,000 people we need is challenging – but absolutely achievable, by working in partnership with the CureME Biobank, charities, patient advocates, local support groups and others. People with ME/CFS can register their interest right now on the DecodeME website.”
The samples will enable the Partnership to undertake the world’s largest genome-wide association study (GWAS) of ME/CFS. Such studies have already helped to uncover the biological roots of many other complex diseases, including the identity of genes involved in Type II Diabetes, and the microglia (immune cells of the brain) that play a key role in Alzheimer’s Disease.
Co-Principal Investigator Dr Luis Nacul, CureME Biobank, London School of Hygiene & Tropical Medicine, says: “Unlocking the genetic susceptibility to ME/CFS is a key part of understanding what causes ME/CFS and the disease mechanisms involved. This, in conjunction with other biomedical research into ME/CFS, should finally pave the way to better diagnosis and the development of specific treatments for this debilitating disease.”
Professor Fiona Watt, Executive Chair of the Medical Research Council, which is helping to fund DecodeME, said: “This project is very significant in its scale and ambitions. It is one of the biggest studies into potential genetic connections to ME/CFS and I would like to congratulate Prof Chris Ponting and his colleagues on this award. It signals the shared commitment of funders, researchers and patients to work together to gain new insights into ME/CFS.”
Dr Louise Wood, joint head of the National Institute for Health Research, said: “I am pleased to see the research teams in Edinburgh and the London School of Hygiene & Tropical Medicine, and patient groups, come together to take forward this important project which seeks to shine a light on the causes of ME/CFS for the benefit of people living with this debilitating condition. Patient involvement – one of NIHR's key values – has been embedded throughout, bringing huge relevance and value to the project."
The study is scheduled to begin in September, with recruitment of participants from March 2021. Anyone with ME/CFS aged 16 years or over who wants to take part in the DecodeME study can register here.
I highly recommend the following research links and resources. You can also keep updated with current research studies on the M.E. Support Facebook Page. The information provided is for educational purposes only.
- Advances in ME/CFS Research and Clinical Care
A series of 24 papers on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, published in 2018-2019, in the online journals Frontiers in Neurology and Frontiers in Pediatrics.
- Bateman Horne Center
"The Bateman Horne Center (BHC) is a non-profit, interdisciplinary Center of Excellence where clinical care, research, and education meet to collectively advance the diagnosis and treatment of myalgic encephalomyelitis/chronic fatigue Syndrome (ME/CFS), fibromyalgia (FM), and other related comorbidities."
- Be Part of Research
Website run by the National Institute for Health Research (NIHR) designed to help people find and contact research studies taking place in the UK.
- Center for Solutions for ME/CFS
"Research center at Columbia University, committed to understanding the pathogenesis of ME/CFS."
"The world's largest collection of open access research papers."
International research news mailing list.
"Join the ME/CFS Biomedical Partnership to help create the world's biggest study of the causes of ME/CFS."
- Dialogues for a neglected illness
"Dialogues for ME/CFS is a new project being made with an award from the Wellcome Public Engagement Fund. When complete it will consist of a website with about a dozen new short videos, accompanied by links to existing educational materials and references."
- Emerge Australia Research Digest
This free research digest is delivered straight to your inbox every fortnight on a Friday afternoon.
"Euromene is a COST-funded project that aims to establish an Europe-wide network of practitioners conducting research into ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome)."
- Free Medical Journals
"Over the next years, the most important medical journals will be available online, free and in full-text. The unrestricted access to scientific knowledge - the new standard in medical publishing - will have a major impact on medical practice."
"Forward-ME consists of a fairly broad spectrum of charities and voluntary organisations invited by the Countess of Mar to meet from time to time. The Aim of Forward-ME is to promote effective joint working by ME and CFS organisations to maximise impact on behalf of all people with ME and CFS in the UK."
- Fund for Osteopathic Research into M.E.
Research into the osteopathic relief of symptoms of M.E.
- Google Scholar
This search engine helps you find relevant work across the world of scholarly research.
- Health Rising
"Health Rising provides the latest treatment and research information for fibromyalgia and chronic fatigue syndrome (ME/CFS)."
- Index of ME/CFS Published Research
This comprehensive online publication by the ME Association is updated at the end of each month.
- International Association for Chronic Fatigue Syndrome & Myalgic Encephalomyelitis
"The International Association for Chronic Fatigue Syndrome/ Myalgic Encephalomyelitis (IACFS/ME) is an international, non-profit organization of clinicians, scientists, professionals, patients, and advocates dedicated to the care and research of people affected by myalgic encephalomyelitis/ chronic fatigue syndrome (ME/CFS), fibromyalgia, and other related conditions. We publish a peer-reviewed medical journal (Fatigue: Biomedicine, Health, and Behavior), organize international conferences, educate professionals and the public about ME/CFS, and promote science-based care, research, and public health policies."
"An interactive data portal providing access to research results across many biological disciplines from studies that are focused on advancing our understanding Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS)."
- Margaret Williams
Articles on M.E./CFS by Margaret Williams and Professor Malcolm Hooper, with contributions from Eileen Marshall and others.
- ME/CFS Alert
ME/CFS Alert is a YouTube channel run by Deborah Waroff and Llewellyn King.
- Medical News Today
"The Internet's leading independent medical news website. Publishing daily medical news on thousands of health topics."
"Get the latest medical news, clinical trial coverage, drug updates, journal articles, CME activities & more on Medscape."
- ME/CFS Research Review
"Simon McGrath explores the big biomedical stories."
- M.E. Organisations
Organisations around the world are working to find the cause of Myalgic Encephalomyelitis and develop treatments.
A crowdsourced encyclopedia of Myalgic Encephalomyelitis, Chronic Fatigue Syndrome and related diseases.
- ME Research
"We contact researchers all over the world to find ME research studies that are recruiting participants."
- ME Research UK
"ME Research UK is a medical research charity based in the United Kingdom with the principal aim of commissioning and funding scientific investigation into the causes, consequences and treatment of myalgic encephalomyelitis/chronic fatigue syndrome."
- National Advisory Advocacy Council For ME/CFS Research
"We connect people with a passion for further understanding of ME/CFS through research and the translation of robust findings to healthcare practice and consumer self-management for improved quality of life."
- Nightingale Research Foundation
"The Nightingale Research Foundation is a Canadian registered charitable organization dedicated to the study and treatment of Myalgic Encephalomyelitis (M.E.) and related illnesses."
- Open Medicine Foundation
"Established in 2012, Open Medicine Foundation (OMF) leads the largest, concerted worldwide nonprofit effort to diagnose, treat, and prevent ME / CFS and related chronic, complex diseases such as Post Treatment Lyme Disease Syndrome (PTLDS), Fibromyalgia and Post COVID."
PubMed is a free search engine accessing primarily the MEDLINE database of references and abstracts on life sciences and biomedical topics.
- Science for ME
"Where Science and the ME/CFS Community Meet"
"An interactive search tool for navigating biospecimens available for research purposes from studies of myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS)."
- Simmaron Research
"Simmaron Research, Inc. is a Nevada-based nonprofit organization dedicated to advancing scientific research, potentially leading to the discovery of diagnostic markers and effective treatments that will ultimately improve the quality of life for people suffering from CFS/ME and related neuroimmune disorders."
- The UK MECFS Biobank
Research group hosted at the London School of Hygiene and Tropical Medicine.
- The ME Global Chronicle
This is a free PDF magazine that gathers reports about scientific research, editorial writing, M.E. news from around the world, personal stories and creative contributions from those living with or around M.E.
- Virology Blog: Trial By Error
Written by journalist David Tuller about ME/CFS with a particular focus on the UK PACE trial.
- You + M.E. Registry and Biobank
The You + M.E. Registry and Biobank is a project of the Solve ME/CFS Initiative established in 2020 as a patient-centered research resource.