Statement made on 12 May 2022
My Rt Hon Friend the Secretary of State for Health and Social Care (Sajid Javid) has made the following written statement:
Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS) affects the lives of children and adults across the country. It can be an incredibly disabling condition with fluctuating symptoms making it difficult to take part in everyday activities, enjoy a family or social life, access services and engage in work or education – especially for the estimated 25% of people who have severe or very severe symptoms. Whilst there are currently no known cures or treatments for the condition, people with ME/CFS can be supported to manage their symptoms and maximise their quality of life.
Today, on World ME Day, I have two announcements to make to show that the Government is committed to better care and support for people living with ME/CFS and their families.
Firstly, I am pleased to welcome today the publication of the top ten (plus) research priorities for ME/CFS, published by Action for ME and agreed by the James Lind Alliance Priority Setting Partnership on ME. This partnership included people with lived experience and clinicians working together to reach a consensus. I want to thank Action for ME and everyone who took part in this important work, recognising that for many this would have taken considerable effort.
To support these research priorities, I will co-chair a roundtable with my Department’s Chief Scientific Adviser, Professor Lucy Chappell, to bring together experts on ME/CFS, including people with lived experience to discuss what needs to happen next. The Chief Scientific Adviser has asked the UK Clinical Research Collaboration to convene a subgroup on ME/CFS to work with funders, researchers, charities, and people with ME/CFS to drive high-quality applications for research into ME/CFS and support the research community to build capacity and capability in this field. We are committed to funding research into this important area. Funding for high-quality research into ME is available through existing commitments of HM Government to research and development. The National Institute for Health and Care Research (NIHR) will work with the research community to respond to the priorities as set out in the Priority Setting Partnership, alongside other funding partners.
Secondly, I am announcing the Government’s intention to develop a cross-Government delivery plan on ME/CFS for England, aligning with other devolved nations as appropriate. In particular, we are engaging with the Scottish Government to explore areas of potential shared interest and learning, especially in terms of research into ME/CFS.
This will build on the recommendations of the Priority Setting Partnership, the recently updated guideline for ME/CFS from the National Institute for Health and Care Excellence, and the comprehensive work of the All-Party Parliamentary Group on Myalgic Encephalomyelitis to date.
At the heart of the delivery plan will be two core principles. Firstly, that we do not know enough about ME/CFS, which must change if we are to improve experiences and outcomes. Secondly, we must trust and listen to those with lived experience of ME/CFS.
Following this announcement, officials will work with stakeholders ahead of publishing the delivery plan later this year.
The list of priority research areas, as well as downloadable and audio versions of the project report, can be found at www.psp-me.co.uk.
Press Release 28 October 2021
NICE ME/CFS guideline outlines steps for better diagnosis and management
NICE has today (29 October 2021) published its updated guideline on the diagnosis and management of myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome (ME/CFS).
Press Release 1 September 2021
Cortene Inc. announces publication of its InTiME clinical trial in which a short subcutaneous infusion of its experimental drug, CT38, achieved sustained symptom improvement in ME/CFS. The company intends to test CT38 in Long Covid, the post-acute stage of COVID-19 infection, which is considered by many to be the latest trigger for ME/CFS.
Press Release 23 August 2021
Professor Karl Johan Tronstad at the University of Bergen has supervised a study which found biochemical changes in the blood of ME patients. The results support the hypothesis that the disease involves impaired cellular energy metabolism.
Press Release 14.07.21
Researchers at Griffith University’s National Centre for Neuroimmunology and Emerging Diseases (NCNED) have announced a world first-discovery in the diagnosis and treatment of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS).
Published in the journal Frontiers in Immunology, the researchers found that patients with ME/CFS taking low-dose Naltrexone (LDN 3.0-5.0mg/day) show significant improvements in cell function in a laboratory study using a model of natural killer (NK) cells from patients.
“While previous reports have been anecdotal for the benefits of LDN, no scientific data identifying the cellular mechanism for this potential treatment have been published previously,’’ says NCNED Co-Director Professor Sonya Marshall-Gradisnik.
“This is the first in vitro study confirming the efficacy and therapeutic benefit of LDN for ME/CFS patients by characterising the underlying regulatory mechanisms of LDN treatment involving a calcium (Ca2+) ion channel called TRPM3 and opioid receptor interaction in NK cells.”
Calcium is vital to cellular processes and entry to cells is critically controlled by these calcium channels. NK cells are part of the innate immune system and provide an internationally recognised model for estimating loss of function in calcium signalling systems.
“We now further understand that the pathophysiology of ME/CFS is due to ion channel dysfunction and the interaction of the opioid receptor that causes impaired Ca2+ signalling and Ca2+-mediated cell functions, including immune function,” Professor Marshall-Gradisnik said.
NCNED Co Director Professor Donald Staines said their data supported the hypothesis that LDN has potential as a treatment for ME/CFS by characterising the underlying regulatory mechanisms of LDN treatment.
“This study serves to support the repurposing of marketed drugs and support prospective randomised clinical trials using Naltrexone in treating ME/CFS patients,’’ he said.
The world-first scientific research study was achieved using the gold standard of Patch Clamp electrophysiology (PCE) which examines cellular ion currents in pathophysiology and potential pharmacotherapeutics in selected cells from ME/CFS patients and healthy control volunteers.
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."
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.
- All-Party Parliamentary Group on Myalgic Encephalomyelitis (ME)
"The All-Party Parliamentary Group on Myalgic Encephalomyelitis (ME) seeks to improve health, social care, education and employment opportunities for people with ME and encourage biomedical research into the cause and treatment of ME."
- 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."
"CHROME stands for CHRonic fatigue syndrOME. CHROME uses health information, a few drops of blood, and a urine sample to develop a more thorough understanding of CFS presentation and treatment."
"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."
- Doctors with M.E.
"The global professional association for medical practitioners, scientists and researchers in the field of myalgic encephalomyelitis. The leading international experts in the field of post-viral disease and related conditions."
- 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)."
- HRB Open Research
"HRB Open Research is a platform for HRB-funded researchers to rapidly publish their research outputs in an open and accessible way."
- 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.
- ME/CFS Priority Setting Partnership
"The ME/CFS Priority Setting Partnership aims to identify your top ten research priorities to influence research funding in the future."
- 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."
- Plain Language Medical Dictionary
Application by the University of Michigan Library.
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 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.
- The UK MECFS Biobank
Research group hosted at the London School of Hygiene and Tropical Medicine.
- 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.