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.
Malcolm Hooper is a British pharmacist and emeritus professor of medicinal chemistry at the University of Sunderland. He is best known for his advocacy related to Gulf War syndrome.
Xenotropic murine leukemia virus–related virus (XMRV) is a retrovirus which was first described in 2006 as an apparently novel human pathogen found in tissue samples from men with prostate cancer. Initial reports erroneously linked the virus to prostate cancer and later to chronic fatigue syndrome (CFS), leading to considerable interest in the scientific and patient communities, investigation of XMRV as a potential cause of multiple medical conditions, and public-health concerns about the safety of the donated blood supply.
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.
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.
Whittemore Peterson Institute (WPI) is a 501(c)(3) nonprofit medical research institute dedicated to scientific discovery surrounding complex neuroimmune diseases including chronic fatigue syndrome (CFS) and other similarly presenting illnesses. Founded in 2005, it is currently located within the Center for Molecular Medicine at the University of Nevada, Reno. It was founded in 2005.
Judy Anne Mikovits is an American former research scientist who is known for her discredited medical claims, such as that murine endogenous retroviruses are linked to chronic fatigue syndrome (CFS). As an outgrowth of these claims, she has engaged in anti-vaccination activism, promoted conspiracy theories, and been accused of scientific misconduct. She has made false claims about vaccines, COVID-19, and CFS, among others.
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.
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.
International May 12th Awareness Day, also known as International ME/CFS Awareness Day is held every year to raise awareness of myalgic encephalomyelitis (ME)/chronic fatigue syndrome (CFS), fibromyalgia, multiple chemical sensitivity, Gulf War syndrome and other chronic immunological and neurological diseases (CIND).
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. Recruitment closed on 15 November 2023 and results are expected in 2024.
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.
Andrew Melvin Ramsay (1901–1990) was a British physician, who is known for his research and advocacy on myalgic encephalomyelitis (ME), a chronic disease causing muscle weakness and cognitive dysfunction. Ramsay worked as a consultant at the Royal Free Hospital in London during a mysterious 1955 disease outbreak of what later became known as ME. He studied the disease and similar outbreaks elsewhere. Work by Ramsay showed that although ME seldom caused death, the disease could be highly disabling.
