DecodeME is an ongoing genome-wide association study searching for genetic risk factors for ME/CFS. With a planned recruitment of 25,000 patients, it is expected to be the largest such study to date. [1] [2] Recruitment closed on 15 November 2023 and results are expected in 2024.
ME/CFS is a chronic medical condition that often causes significant disability, and whose cause is unknown. [3] Genetic studies of ME/CFS have been done before, but without significant findings. The authors of a 2022 study suggested that research with more participants is needed to discover statistically significant differences. [4]
DecodeME aims to perform such a large study. It is being run as a partnership between Action for ME and the University of Edinburgh's MRC Human Genetics Unit, with Chris Ponting as chief investigator, and with £3.2 million in funding from the UK's Medical Research Council and the National Institute for Health Research. [1] The researchers have also worked with Forward ME and a group of patient advocates, the latter of which contributed to the design of the study. [5] [6]
The investigators hope the study's findings will inform further research into the pathology of ME/CFS and potential treatments. They also hope that discovering a genetic connection will help dispel some of the stigma around ME/CFS. [7]
The study announced receipt of funding in June 2020, and recruitment was opened on 12 September 2022. [1] [6] [8] In January 2023, the team wrote that over 17,000 patients had completed the survey, of which almost 9,000 were sent collection kits. [9] On 2 May 2023 they announced that over 10,000 people had been asked to provide samples. [10]
In June 2023, DecodeME made changes to their data analysis methodology that allowed them to invite additional participants to give DNA. [11] Recruitment is expected to close on 15 November. [12] Recruitment for the study closed on 15 November 2023. [13]
DecodeME is a genome-wide association study with a case-control design. Expected recruitment is at least 20,000 patients whose onset was not associated with COVID-19, and 5,000 people with long COVID who were diagnosed with ME/CFS after COVID-19. DNA will be collected by sending patients kits to collect saliva at home and control samples will be obtained from the UK Biobank. [2] [14] There will also be a survey to collect data on symptoms. [8] Results are expected to be published by September 2024. [15] If new risk factors are identified, it may enable further research into potential causes, tests, or treatments. [1] [16]
The ME Association is a UK health charitable organization that provides information, advocacy, and services to persons and families affected by ME/CFS, and raises funds for research into ME/CFS. It has been reported to be one of the two largest UK charities for ME/CFS.
Rintatolimod, sold under the tradename Ampligen, is a medication intended for treatment of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). There is some evidence it may improve some ME/CFS symptoms.
ME Research UK is a medical research charity based in the United Kingdom with the principal aim of commissioning and funding scientific (biomedical) investigation into the causes, consequences and treatment of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). ME/CFS is a debilitating illness which affects between 120,000 and 240,000 people in the United Kingdom alone, but which is not well understood nor, in many cases, properly recognised.
The Solve ME/CFS Initiative is an American nonprofit that does research and advocacy for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), Long COVID, and other post-infectious diseases. Their stated mission is to assist research into ways to diagnose, treat, or cure these conditions. They also advocate for increased awareness, public funding of research, and access to medical care for patients.
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) has a long history with an evolution in medical understanding, diagnoses and social perceptions.
Treatment of ME/CFS is variable and uncertain, and the condition is primarily managed rather than cured.
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is an illness with a long history of controversy. Some professionals within the medical community do not recognize ME/CFS as a genuine condition, nor is there agreement on its prevalence. There has been much disagreement over the pathophysiology of chronic fatigue syndrome, how it should be diagnosed, and how to treat it.
Clinical descriptions of ME/CFS vary. Different groups have produced sets of diagnostic criteria that share many similarities. The biggest differences between criteria are whether post-exertional malaise (PEM) is required, and the number of symptoms needed. The pathology of ME/CFS is unknown, and it can be a difficult condition to diagnose because there is no standard test, many symptoms are non-specific, and because doctors and patients may be unfamiliar with post-exertional malaise. Subgroup analysis suggests that, depending on the applied definition, CFS may represent a variety of conditions rather than a single disease entity.
The Lightning Process (LP) is a three-day personal training programme developed and trademarked by British osteopath Phil Parker. It makes unsubstantiated claims to be beneficial for various conditions, including chronic fatigue syndrome, depression and chronic pain.
Graded exercise therapy (GET) is a programme of physical activity that starts very slowly and gradually increases over time, intended as a treatment for chronic fatigue syndrome. Most public health bodies, including the CDC and NICE, consider it ineffective, and its safety is disputed. However, GET still enjoys support among a minority of clinicians and organizations.
David Sheffield Bell is an American physician who has done extensive research on the clinical aspects of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). He has also conducted evaluations and research in pediatric ME/CFS and written numerous articles about the condition.
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a debilitating long-term medical condition. People with ME/CFS experience lengthy flare-ups of the illness following relatively minor physical or mental activity. This is known as post-exertional malaise (PEM) and is the hallmark symptom of the illness. Other core symptoms are a greatly reduced ability to do tasks that were previously routine, severe fatigue, and sleep disturbances. The baseline fatigue in ME/CFS does not improve much with rest. Orthostatic intolerance, memory and concentration problems, and chronic pain are common. About a quarter of people with ME/CFS are severely affected and unable to leave their bed or home.
Ronald Wayne "Ron" Davis is professor of biochemistry and genetics, and director of the Stanford Genome Technology Center at Stanford University. Davis is a researcher in biotechnology and molecular genetics, particularly active in human and yeast genomics and the development of new technologies in genomics, with over 30 biotechnology patents. In 2013, it was said of Davis that "A substantial number of the major genetic advances of the past 20 years can be traced back to Davis in some way."
Jennifer Brea is an American documentary filmmaker and activist. Her debut feature, Unrest, premiered at the 2017 Sundance Film Festival and received the US Documentary Special Jury Award For Editing. Brea also co-created a virtual reality film which premiered at Tribeca Film Festival.
Rosamund Vallings is a medical doctor, known as one of the leading authorities on Chronic Fatigue Syndrome (ME/CFS) in New Zealand.
Post-exertional malaise (PEM), sometimes referred to as post-exertional symptom exacerbation (PESE), is a worsening of symptoms that occurs after minimal exertion. It is the hallmark symptom of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and common in long COVID. PEM is often severe enough to be disabling, and is triggered by ordinary activities that healthy people tolerate. Typically, it begins 12–48 hours after the activity that triggers it, and lasts for days, but this is highly variable and may persist much longer. Management of PEM is symptom-based, and patients are recommended to pace their activities to avoid triggering PEM.
The Open Medicine Foundation (OMF) is a US-based charity that funds research into the illnesses myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), fibromyalgia, post-treatment Lyme disease syndrome, and long COVID.
A 2-day CPET is a cardiopulmonary exercise test given on two successive days to measure the effect of post-exertional malaise (PEM) on a patient's ability to exercise. PEM is a cardinal symptom of myalgic encephalomyelitis/chronic fatigue syndrome and is common in long COVID as well.
Post-acute infection syndromes (PAISs) or post-active phase of infection syndromes are a group of medical conditions characterized by chronic illness triggered by an infection. They are sometimes referred to as infection-associated chronic illnesses as well. While it is commonly assumed that people either recover or die from infections, illness is a possible outcome as well. Examples include long COVID, chronic fatigue syndrome (ME/CFS), and post-Ebola virus syndrome. Common symptoms include post-exertional malaise (PEM), severe fatigue, neurocognitive symptoms, flu-like symptoms, and pain. The pathology of most of these conditions is not understood and management is generally symptomatic.
Carmen Scheibenbogen is a German professor, doctor and acting director of the Institute for Medical Immunology of the Charité university hospital in Berlin. She specialises in hematology, oncology and immunology. She leads the Outpatient Clinic for Immunodeficiency and the Fatigue Centre at the Charité hospital. She is one of the few doctors specialised in myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) in Germany, and also researches Long COVID.