European ME Alliance Norway

Ellen Piro

IACFS Special Service Award

Ottawa, Canada

September 2011

September 2011

EMEA Norway member Norwegian ME Association is holding its next ME/CFS conferences
on 18th and 19th October in Oslo and Bergen, respectively.

The nomination by another incredible Norwegian ME advocate, Eva Stormorken, is below

Award Nomination - Special Service Award

I hereby nominate Ellen Vivian Piro for the Special Service Award. The reasons for this award nomination are as follows.

Ellen Piro has been a pioneer in the field of ME in Norway for almost a quarter of a century.  She has worked hard to influence politicians, health professionals and health authorities. As a determined and professional leader she has accomplished important victories for the Norwegian ME patients. Main outstanding achievements: Firstly, she has made ME known to health professionals, politicians and the public; secondly, a major victory occurred in 1995 when she managed to get 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); and thirdly, her contribution in the process of getting the Norwegian Labour and Welfare Administration to codify a set of rights regarding unemployment and disability benefits for people with ME, published in an administrative guideline in 1999.

Ellen Piro became acutely ill with ME in January 1987. Since then she has dedicated her life to help, support and educate others. In the fall the same year, literally from her bed, Piro founded the Norwegian ME Association, an advocacy group aiming at helping people with ME and their care givers, improving health care services, social rights, legal rights, and enhance public awareness.

From she founded the association and until she decided to step down at the age of 70, on December 31st, 2010, she took on any job or task, in the years it took to build the organization, whether it was being the leader, secretary, ombudsman for patients, mentor, adviser, coordinator, press contact, having telephone call duty etc. It was never a nine-to five job but rather around the clock commitment during all these years. This has to be seen in the light of her severe illness, which makes the contribution even more admirable and deserving of the prestige of the award.

The first office was “in bed”, but now the main office is located in the centre of Oslo. Ellen Piro has been the editor and lead author of the organizations’ newsletter in all these years, translated and helped translating medical information to the benefit of non-English speaking Norwegian citizens to educate anyone who is affected in one way or another. During the growth of the association, both number of members and subdivisions have steadily increased. In nearly every county there is now a subdivision and one or more local support groups. In order to educate health professionals and patients she has been in charge of member teams in organizing medical conferences in different parts of Norway. Only one conference will be mentioned here, namely the International Biomedical Conference in Oslo, October 2007, when the board members of IACFS/ME decided to have their board meeting in Norway and also kindly offered to speak at the Norwegian ME Association’s conference. This two-day conference turned out to be a great success; full house both days, and the presence of a Member of Parliament.

In addition to her leadership, organizational work, and fulfilling the mandate of being a patient representative in the public domain, she supported and helped severely sick ME patients dismissed by the health care system. Literally speaking she has kept many sufferers “alive” with her round the clock service, moral support to keep up hope, practical assistance as well as attendance with patients during meetings with health professionals.  She has done an outstanding job, always in a polite and caring manner, and in a very unselfish way.  Ellen Piro has built her work on personal strengths and experience, the experience of other ME sufferers, their care givers’, and science-based knowledge to the benefit of thousands of people in Norway and elsewhere. Numerous Norwegian patients and their care givers are extremely grateful for the kind of care they have received on such a personal level.

Ellen Piro, the association’s international contact person since founding the Norwegian ME Association and until this day, has attended numerous international conferences to connect with experts worldwide and bring home the latest research findings, subsequently used to educate patients, care givers, health professionals and the public about this severe but poorly understood disease.

In collaboration with persons representing a handful of European countries, she founded the European ME Alliance, an umbrella organization for national ME associations in Europe. Although she is small by stature, her efforts have been huge, and her voice in the media has been strong and clear. She has handled the ever increasing media pressure with determination and proficiency, and as she often expresses: “I know we are right!”

Recently Ellen Piro received His Majesty the King’s Medal, a decoration given for meritorious services, in order words, for her impressive and long standing work related to ME.

I want to express my deepest respect and admiration for what Ellen Piro has accomplished. ME is very well known in Norway today, legal rights are improved and the process of improving the health care services has lately taken a new turn as patients’ voices are finally going to be heard, which hopefully will benefit the lives of the sufferers and their loved ones.

Sincerely yours,

Eva Stormorken RN, CRNA, PhD Student


in Norwegian - click on image below



Last Update: 25 September 2011

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