Ellen Vivian Piro is a devoted patient advocate in Norway who lives with myalgic encephalomyelitis (ME). She founded Norges ME Forening (Norwegian ME Association), an advocacy group, aimed at helping people with ME and their care givers, improving health care services, social rights, legal rights, and enhance public awareness. Ellen Piro became severely ill with ME in January 1987 after an acute onset of a flu-like illness resulting in her being bedbound for a period.
Her list of accomplishments are many:
- worked to increase awareness of ME to health professionals, politicians and the public,
- founded Norges ME Forening and served as its president for many years,
- translated information about ME into Norwegian for non-English speaking Norwegians,
- succeeded in having the National Health System officially recognize ME as a distinct disease in the Norwegian Edition of the International Classification of Diseases, ICD-10, G93.3 (Neurology) in 1995,
- contributed to the effort to have the Norwegian Labour and Welfare Administration codify a set of rights regarding unemployment and disability benefits for people with ME, which was published in an administrative guideline in 1999,
- helped organize medical conferences in different parts of Norway,
- collaborated in the founding of European ME Alliance, an umbrella organization for national ME associations in Europe.
Awards[edit | edit source]
- 2011, IACFS/ME Special Service Award - for outstanding personal effort and contribution to the CFS/ME community
Talks and interviews[edit | edit source]
- 2007, Speaker at the 2nd Invest in ME International ME Conference on "NICE Guidelines – Experiences from Norway"DVD available
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.