11:10 a.m.
I do not understand this "terrible conflict of interest" or what the "wrong
kind of messages getting out about FM" are. Is the conflict of interest
simply that Lilly is part of the website (a sponsor)? As Lydia has pointed
out, having a major drug company part of this probably provides resources,
many of which are not monetary, that we could not have had without them.
Drug company representatives are in doctor's offices frequently. They know
how to talk to physicians and what doctors are thinking about ME and FM.
They know where the lack of knowledge lies and the attitudes. I think they
are a valuable resource far beyond the money.
I do not see blatant advertising on the site although I have not clicked on
every possible link. The only thing that made me somewhat concerned was
their Privacy Policy but what website do you go to that does not collect
info on you through cookies. Beyond that you do not have to give any info.
At least Lilly is up front and tells us what they are doing.
Do you think having Crystaal involved in the development of the Working Case
Clinical Definition, Diagnostic and Treatment
Protocols, Consensus Documents was a conflict of interest as well? As Lydia
pointed out, this would not have been possible without a pharmaceutical
company involved. The very fact that 2 pharmaceutical companies have now
been involved shows that we are not biased and promoting any one company. I
am assuming that if some other company wanted to become involved they would
be welcome as well?
I have attended Grand Rounds at our hospital. These are information sessions
on various health problems giving the newest info on the problem and new
treatments. At our hospital at least, these are all paid for by one drug
company or another. As I recall, other than a small sign on the lunch buffet
table saying "sponsored by..." there is no other advertising and the
company's own drug for that problem is not pushed. In fact for most I have
attended I could not even tell you what drug company sponsored it. If that
is how the ME/CFS info sessions work I have absolutely no concerns. We could
not afford to do them without the financial support.
I have not read everything on the website but have not seen a "wrong
message". If there is something of concern, I would like to know what it is.
I assume that if there is some wrong message about FM that the majority
agree is a wrong message, (does this apply to CFS as well?) there would be
an opportunity to correct the message.
I can only imagine the hours of work the network board have put into this on
our behalf. I can also only imagine the long discussion/debate (and possibly
sleepless nights) on the pros and cons of whether our Network should be
involved in this. If this is the decision that was made by the board I fully
respect their decision. From what I have seen so far I support the National
ME/FM Action Network's involvement in this project and thank Lydia and
others for their involvement in the project on our behalf.
By the way, I am not on the Network board, am not a doctor, and do not work
for a drug company. I had to quit work about 2 years ago due to being
disabled by ME and FM.
Paul Wagler
----- Original Message -----
From: "Karen Waisglass" <k.waisglass(a)rogers.com>
To: "Lydia Neilson" <ag922(a)ncf.ca>
Cc: <nmefman-contacts(a)lists.ncf.ca>
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(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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