National Alliance for Myalgic Encephalomyelitis
The National Alliance for Myalgic Encephalomyelitis (NAME-US) is a small American patient advocacy group lobbying for improved disease definition.
Aims[edit | edit source]
- To increase awareness of the urgent need for formal recognition of ME as a disabling neuroimmune disease
- To increase awareness of the need for a research definition based on hard evidence of multiple body system abnormalities, not on degrees or variations of "fatigue," or a within broad category of fatiguing and psychological illnesses.
- To advocate for the implementation of the Myalgic Encephalomyelitis: International Consensus Criteria and the Nightingale definition of Myalgic Encephalomyelitis (ME) not only here in the U.S, but worldwide, to make these valuable documents available to all health care professionals, and to support their operationalizing to an international research definition.
- Through the above actions, bring the internationally used and correct term, ME, into common usage and familiarity in every medical establishment and household in the U.S. This disease needs to be distinguished from CFS, for the benefit of both ME patients and those diagnosed with CFS that do not fit ME definitions. Some treatments for cfs can be seriously harmful for those with clearly defined ME, and some CFS patients are prematurely (mis)diagnosed without thorough screening for ME or other serious but treatable illnesses, and everyone in this country and abroad - medical practitioners and general public alike - needs to be aware of these facts.
Notable people[edit | edit source]
The co-founders of NAME-US are Steven Du Pre and Lois Ventura.
History[edit | edit source]
NAME-US.org was created in 2006 by long-time, severely affected patients in the US.
Online presence[edit | edit source]
References[edit | edit source]
Myalgic encephalomyelitis (ME) - A disease often marked by neurological symptoms, but fatigue is sometimes a symptom as well. Some diagnostic criteria distinguish it from chronic fatigue syndrome, while other diagnostic criteria consider it to be a synonym for chronic fatigue syndrome. A defining characteristic of ME is post-exertional malaise (PEM), or post-exertional neuroimmune exhaustion (PENE), which is a notable exacerbation of symptoms brought on by small exertions. PEM can last for days or weeks. Symptoms can include cognitive impairments, muscle pain (myalgia), trouble remaining upright (orthostatic intolerance), sleep abnormalities, and gastro-intestinal impairments, among others. An estimated 25% of those suffering from ME are housebound or bedbound. The World Health Organization (WHO) classifies ME as a neurological disease.