6:29 p.m.
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
Lydia
Lydia E. Neilson, M.S.M. , Founder
Chief Executive Officer
NATIONAL ME/FM ACTION NETWORK
512 - 33 Banner Road
Nepean, ON K2H 8V7 Canada
Tel. 613.829.6667
Fax 613.829.8518
Email: mefmaction(a)ncf.ca
www.mefmaction.com
NATIONAL ME/FM ACTION NETWORK - HOST OF THE IACFS/ME INTERNATIONAL RESEARCH & CLINICAL
CONFERENCE - OTTAWA, CANADA
SEPTEMBER 22 - 25, 2011
Visit: www.iacfsme.org