10:18 a.m.
Dear Karen
I do agree with you. I understand the allure but if you don't have very canny staff
working with you, you become a marketing tool. And even then!
I have worked for decades in the non-profit sector, including for a very large
`disease', and my experience is the corporations call the shots - in the nicest but
firmest manner - and organisations and particularly the senior Head Office staff become
very `close'. There is conflict of interest and, in my experience, a narrowing of
opportunities since the company wants your support totally and exclusively. Going
`outside' is definitely frowned upon.
Money raised `for a cure' takes a circuitous path via research grants to bona fide
researchers whose work becomes an issue vis a vis ownership but somehow end up in the
hands of Big Pharma. Successful products are, in fact, developed at the expense of the
patients who then must purchase them from the company that benefited from the aforesaid
research grant, in fact. Quite circular.
I sent the following advice to Lydia and hope the organisation's Directors remember
it:
`There's no magic so my advice would be for the organisation to be very careful in
dealing with your partners. You are going to be living in 2 worlds.
The profit-making sector has totally different goals to ours and one should never forget
that. Organisations in my experience tend to give more than they get because they think
they have to. Not so. You do have to remember to deal with them on an equal
business-like footing no matter what they try or say. It's a matter of
chutzpah.'
`I would like the Network to be working on its own game plan so that, when or if, a
product does become available, we will be prepared to fight for access to it.'
I shall follow this with interest but not enthusiasm and I hope the organisation's
Directors are very, very careful for their own sakes.
Pat Beurteaux
From: k.waisglass(a)rogers.com
To: ag922(a)ncf.ca
Date: Thu, 27 May 2010 20:51:53 -0400
CC: nmefman-contacts(a)lists.ncf.ca
Subject: Re: [Nmefman] ANNOUNCEMENT - FIBROMYALGIA: RECONNECTING TO WHAT MATTERS. 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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Patricia Beurteux