8:01 p.m.
Dear Friends:
Some of you may be uneasy about the National ME/FM Action Network
lending our support to a pharmaceutical company, in this case, Eli
Lily, and its involvement with the website
http://www.reconnectingtowhatmatters.ca
The Canadian Pain Coalition, FM-CFS Canada and the National ME/FM
Action Network are able to bring its websites and education and
awareness to more places through this website and reach more people
we otherwise could not reach for a long time.
What we want for both ME/CFS and FMS is treatment, awareness and
research. Before a product comes to the public, it is researched for
a very long time and then was researched for Fibromyalgia. Before
the pharmaceutical companies got interested, no one heard about
Fibromyalgia. Now commercials about pain include Fibromyalgia.
What is important is that once the pharmaceutical gets interested in
an illness, the illness gets more accepted by the doctors they
visit. Pharmaceutical representatives visit doctors' offices
and present their products for treatments for illness. Many doctors
are skeptical but once a treatment is available, the doctor now will
pay more attention, becomes aware and will spread the news with other
doctors. As commercials are now made, patients who have gone without
diagnosis will now have more information than they did previously and
more likely to go see their doctor with more knowledge as to what
they may be suffering with.
In 2003, when we got the panel of doctors together in Toronto for
both the Working Case Clinical Definition, Diagnostic and Treatment
Protocols, Consensus Documents were established in 3 days of a panel
for Fibromyalgia and one for ME/CFS. Both those panels were
experienced doctors.
We were unable to get financial help from the government or any other
source to bring those doctors to Canada for these documents. The
Canadian Definition has become known as the best of its kind for
diagnosing and treatment. The summary ME/CFS Overview has been
printed in other languages and is now also available on the Public
Health Agency website.
The reason we were able to bring these doctors to Canada and some
came from Europe as well as from the U.S. and other parts of Canada
was because a pharmaceutical company, Crystaal at that time, believed
that a clinical definition and diagnostic and treatment protocols
were important and believed in the National ME/FM Action
Network. They paid for the transportation, hotels and meals and
everything else the doctors needed. Everything was professionally
done and not once was any product pushed. They are not permitted to do so.
This same definition was used by the Whittemore Peterson Institute in
the XMRV blood sample research. This research opened up the doors
and awareness to more research which is still continuing. This
definition could not have been used if we did not have the means of
bringing the doctors to Canada for that research and consensus.
There are also many provinces i.e. Saskatchewan, Manitoba, the
Atlantic Provinces and the Yukon Territories where people are not
being diagnosed and not getting any help or support. By holding
patient sessions and by pharmaceutical companies visiting doctors'
offices, all that can change and the more exposure our illnesses
have the more acceptance and research.
It is important to remember the big picture and how best to spread
awareness, understanding, education and research.
Lydia
Lydia E. Neilson, M.S.M.
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
E-mail: ag922(a)ncf.ca
Web: http://www.mefmaction.net