May 12th is International Awareness Day
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A blue ribbon represents ME/CFS.
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May 12, 2010 marks the 18th anniversary of
International Awareness Day for ME/CFS and FMS
"If a cause and cure are to be found for ME/CFS, FM, MCS and related
illnesses in the near future, government and medicine must be made fully aware
of their scope and impact. Despite the
efforts of a number of dedicated groups and individuals, there are still vast
pockets of ignorance and misunderstanding. To this day, many patients run
directly into a medical establishment that, in general, knows very little about
these serious threats to human health. It is therefore crucial that all those
affected by the illnesses make their voices heard, especially on May 12th of
each year." [RESCIND,
INC. org]
How the International Awareness Day Began
The idea of an International Awareness Day originated with Tom Hennessy, the founder of RESCIND, Inc. (Repeal Existing
Stereotypes about Chronic Immunological and Neurological Diseases). Mr.
Hennessy is based in the U.S.
but understood that it needed to be an International event. In 1992, he designated May
12 as the International Awareness Day for the spectrum of illnesses he called
Chronic Immunological and Neurological Diseases (CIND).
Why May 12th was Chosen
May
12 was chosen as it coincided with the birth date of Florence Nightingale, the
English army nurse who inspired the founding of the International Red Cross. Nightingale
became chronically ill in her mid-thirties with a Myalgic Encephalomyelitis/Chronic
Fatigue Syndrome (ME/CFS)-like illness. She was often bedridden for the last 50
years of her life. Despite suffering from a debilitating illness, she managed to found
the world's first School
of Nursing.
Chronic Immunological and Neurological Diseases (CIND)
Mr.
Hennessy included ME/CFS (also known as Chronic Fatigue and Immune Dysfunction
Syndrome -- CFIDS), Fibromyalgia, Multiple Chemical Sensitivity and Gulf War
Syndrome under the CIND umbrella. These illnesses, characterized by
cognitive problems, chronic muscle and joint pain, extremely poor stamina, and
numerous other symptoms, afflict people around the world in alarming numbers.
Support From International Organizations
From
the beginning in 1993, various ME/CFS organizations were behind the idea.
Early support came from a UK
group called BRAME (Blue Ribbon Awareness for the awareness of Myalgic
Encephalomyelitis). They highlighted the May 12th International Awareness
Day at a World Medical Conference on ME/CFS in 1995. This was instrumental
in the campaign being adopted internationally for ME/CFS.
Efforts by Fibromyalgia organizations took a little longer and efforts by MCS
groups have been limited. National FM efforts in the United States started in 1997 with
the National Fibromyalgia Association (NFA). Multiple Chemical Sensitivity and
Environmental Sensitivity groups have for the most part not taken up the day,
although there have been some in the US who have used the month of May to raise
awareness for Multiple Chemical Sensitivity and Toxic Injury Awareness.
National ME/FM Action Network
The National ME/FM Action Network was founded in 1993 by Lydia Neilson and
became a Canadian registered charitable organization on June 16, 1993.
Through the efforts of this newly founded organization, May 12th has been Awareness Day in Canada since 1994. For the first
year, it was only for ME/CFS but from 1995 and onward it has been for both
ME/CFS and for FM. On May 12, 1996, Parliament declared a National Awareness Day for
Myalgic Encephalomyelitis / Chronic Fatigue Syndrome and Fibromyalgia. In
2006, the Senate proclaimed May 12 to be a National Awareness Day for
Fibromyalgia and ME/CFS.
In Canada,
May 12 is included in Health Canada's
Calendar of Health Promotion Days as "Fibromyalgia and Chronic Fatigue
Syndrome National Awareness Day". Many
provinces and cities across Canada have proclaimed May 12 ME/CFS and
Fibromyalgia Awareness Days and many individual support groups have organized
May 12 Awareness activities.
Some
organizations have an International ME/CFS Awareness Day (May 12), others have
a week (this year, May 9-15), still others, such as the newly formed European
ME Alliance which includes 9 European countries, use the whole month of
May. Awareness activities also occur in Australia
and New Zealand.
Purpose of Day
Purpose of Day and Need for Action ME/CFS & Fibromyalgia Awareness Day
activities are designed to increase public awareness of ME/CFS and Fibromyalgia and
chronic pain illnesses, as well as to assist patients, patient support groups and
organizations in educating the general public, healthcare and legal professionals, government officials, and
legislative bodies.
Need for Action
Spreading awareness of ME/CFS, Fibromyalgia and MCS and related conditions is important. You
only need to have a look at the Statistics published in the Special Edition of
our Spring-Summer 2009 Quest newsletter. This data was compiled by
Margaret Parlor, President of National ME/FM Action Network and former
statistician with the Federal government for 25 years. It highlights the profile and impact of 23 chronic illnesses and
indicates high levels of impairment, socio-economic disadvantage, and unmet health delivery needs for
ME/CFS, FMS and MCS.
Tom Hennessy
In 2008, Cort Johnson of Phoenix Rising (http://aboutmecfs.org ), interviewed
Tom Hennessy Jr. about his role in the founding of May 12 and RESCIND, Inc. As Cort
notes, Tom was a former advertising executive and is a very articulate
advocate. He developed RESCIND (http://www.rescindinc.org/) as a
virtual lobbying group. Unfortunately Tom has been disabled for many
years with a horrendous case of ME/CFS and, to add insult to injury, he
was critically injured in a car accident in Florida in 2009 and is still recovering in a
nursing home.
Social Media Groups
The development of social media provides new opportunities to share
information about these illnesses and new groups have been formed to take advantage of these
opportunities. Here are some social media groups:
One of
their activities this year is a Facebook event to display a blue ribbon as your
avatar on May 12th 2010
http://www.facebook.com/event.php?eid=831259710
Ribbons
Ribbons are used by many groups as symbols of support or awareness. The
ribbon colour used for ME/CFS is blue, for Fibromyalgia it is purple and for
MCS it is green. In all cases, the ribbon colour is not
unique to the cause but is used for other causes as well. Green ribbons have
been adopted by those with Multiple Chemical Sensitivity and those with
Environmental sensitivity. As well as for other causes, this colour
ribbon is also used for Environmental protection and for Lyme disease
awareness. One MCS campaign, originating
in Hawaii, in
February 2010 with website aptly called the canary report, is using yellow to
represent the canary.
One Person Can Make a Difference – How?
- BECOME a member
of the National ME/FM Action Network and be part of a united voice;
- JOIN your local
support group;
- ASK others what
they know about ME/CFS or FMS when the opportunity arise
- REFUSE to react
to unfairness but help to change the attitude;
- WRITE when
something is in the media which is not accurate or demeans ME/CFS and FMS;
-
CALL and let
your voice be heard when programs talk about ME/CFS or FMS
- REFUSE to be
treated with disrespect by anyone who doesn't believe in your illness;
- ASK for help
when you need it and explain why; and last but not least;
- REMEMBER you are
still you regardless of being ill.