MESSAGE FROM THE CEO
MAY 12th INTERNATIONAL ME/CFS AND FM AWARENESS DAY
Myalgic Encephalomyelitis / Chronic
Fatigue Syndrome (ME/CFS)
and
Fibromyalgia (FM)
Florence Nightingale was
born on that day and her birthdate was chosen by Mr. Tom Hennesay, Founder of
RESCIND, Inc. not only due to her caring and compassion for the sick but also because
she is thought to have been ill with ME/CFS and/or FM. Nevertheless, she continued to look
after others from her bed.
Those of us who are involved
in advocacy, support, education and research for ME/CFS and FM strive to do as
Florence did so that the day will come that those ill can be diagnosed and
treated in the same manner and with the same respect as those with other
illnesses and afflictions.
A 2005 survey by Statistics Canada estimates that over 333,000
Canadians have been diagnosed with ME/CFS and 389,000 with FM. That is not taking
into consideration those who have been misdiagnosed or undiagnosed. ME/CFS and FM affects all age
groups, including children, all racial/ethnic groups and all socioeconomic
levels.
Adults, children and young adults once enjoyed an active and
healthy lifestyle are stricken and almost overnight become chronically
ill. Many have to stop work while
children and young adults leave school and their youth and carefree time of
life has been taken away from them.
When and if it will return is still not determined as research has not
as yet found the answer to what is the cause of those illnesses and therefore
no treatment is available.
Symptoms are treated instead in an effort to reduce its effects.
What is it like to have ME/CFS or FM? Picture yourself getting up in the morning, already at a
disadvantage of not having a proper sleep and a reduced amount of energy. As the day starts, and having no
relation to anything mental or physical you do, your energy begins to drain
from you and with it comes problems speaking, learning difficulties, doing
tasks or activities etc. Where
even a simple brushing of teeth can lead you back to bed.
Think of how it would feel that before you attempt to do anything
you have to weigh the consequences of what you are going to undertake. For each mental or physical action
there is a price to pay. You know
you are up but you don’t know how long you will be up and when the symptoms of
ME/CFS and FM overtake you and you are stopped in your track. When you can do your next task or
activity is up in the air and any plans you make are always on the
understanding that they may have to be aborted at the last minute. That is a day in the life of a person
with ME/CFS and FM.
Take a moment to think of those you know who are ill and treat
them with compassion and understanding.
They cannot take their day for granted and knowing you care and believe
in them may not change the illness but will bring them comfort.
The National ME/FM Action Network is the host of the 10th
international research and
clinical conference for ME/CFS, FM and related illnesses from September 22nd
– 25th, 2011 here in Ottawa, Canada. This is a four-day professional conference consisting of
workshops, meetings, lectures and one day for the general public and
patients.
We need your help to spread the word and your financial assistance
for the costs that come from such a huge undertaking. Bringing the researchers, clinicians and healthcare
providers together from around the world presents the unique opportunity to
share information and scientific knowledge.
Please join us in our quest.
Together we can and will succeed.
May 12th A Day of Action.
Sincerely,
Lydia
For conference details and registration,
pleasee visit http://www.iacfsme.org
and http://www.mefmaction.com