| 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 31 st,
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
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