Ellen Piro
From MEpedia, a crowd-sourced encyclopedia of ME and CFS science and history
Ellen Vivian Piro is an ME patient and a devoted patient advocate in Norway. 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 and was bedbound for a period.[1]
Her list of accomplishments are many[2]:
- she has increased awareness of ME to health professionals, politicians and the public,
- she founded Norges ME Forening and served as its president for many years,
- she translated information about ME into Norwegian for non-English speaking Norwegians,
- in 1995, she got the National Health System to officially recognize ME as a distinct disease in the Norwegian Edition of the International Classification of Diseases, ICD-10, G93.3 (Neurology),
- she 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,
- she helped organize medical conferences in different parts of Norway
- she 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 Photo of Ellen with award[3]
- 2011, His Majesty the King’s Silver Medal for her work with ME Photo of Ellen with medal[4]
Talks and Interviews[edit | edit source]
- 2007, Speaker at the 2nd Invest in ME International ME Conference on NICE Guidelines – Experiences from Norway[5] DVD available
