4:04 p.m.
Karen,
Please explain yourself to the organization, why would you have such a disturbance and
consider there is a conflict of interest and the wrong messages are getting out about
FM.?
Nobody has been more involved with the public awareness campaign about fibromyalgia than I
have. I have personally hosted two public awareness concerts, had my name dropped in the
House of Commons by an MP for being responsible for his knowledge regarding this
debilitating illness through a radio station in Newfoundland and Labrador, worked
tirelessly for the past twenty years raising public awareness and told by my gp that I was
the most knowledgable person he could think of regarding Fibromyalgia.
With the help of FM Canada, I toured the province of PEI and last two years toured the
atlantic provinces trying to raise public awareness. .
If the pharmaceuticl companies can spare some of their wealth to raise public awareness
and educate people and health care workers about this debilitating illness then my
blessings to them.
Nobody gets forced to take their medications. I take none myself, so with the right
educational programs, etc, etc, I believe it will be a a win win situation for everyone.
We are getting very tired and not getting far with our effforts..we need help...
---- Karen Waisglass <k.waisglass(a)rogers.com> wrote:
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(a)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(a)ncf.ca
> Web: http://www.mefmaction.net
> _______________________________________________
> Nmefman-contacts mailing list
> Nmefman-contacts(a)lists.ncf.ca
> http://lists.ncf.ca/mailman/listinfo/nmefman-contacts
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