----- Original Message -----
Sent: Thursday, May 27, 2010 8:51
PM
Subject: Re: [Nmefman] ANNOUNCEMENT -
FIBROMYALGIA: RECONNECTING TO WHATMATTERS. LOOKING AT THE BIG PICTURE
Lydia, uneasy is a big underatatement. I am
very disturbed that you
would get the organization into this
terrible conflict of interest and
agree to the wrong kind of
messages getting out about FM. Is there
some way to pull this
out of the fire?
Karen
Sent from my iPhone
On 2010-05-24,
at 8:01 PM, Lydia Neilson <ag922@ncf.ca> wrote:
> 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@ncf.ca
> Web: http://www.mefmaction.net
>
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