Dear Friends:
Thank you so very much for your supportive replies and I appreciate
your trust which means a lot to me. We do NOT get financial
assistance from the pharmaceutical industries. If we went after
that, we would be rich today and I certainly would be. I have not
nor has the National ME/FM Action Network ever promoted a product but
we do think it is the right of everyone to know what research is
being done and what products are being used, homeopathic or
otherwise. All we do is bring information to all those who seek it.
There are also strict guidelines by the governments that the
pharmaceutical companies have to follow. We joined in name only in
partnership with Eli Lily for its website Fibromyalgia: Reconnecting
to What Matters. It gives us the opportunity to reach more people as
without our involvement, the site will stay go up but without us
having a chance to bring information to the people.
What is particularly important is that a medical professional will
seek out that site looking for information more readily than he/she
would in a medical journal on Fibromyalgia. He/she would not go to a
support group and by being present there we expose that professional
to research and information which we otherwise would not have access to.
We get no financial assistance from any drug company and the funds of
$150,000 that we are trying to raise is to cover the cost of the
conference and will not be kept by us. It is for the facilities
where the conference is to be held, the medical professionals who are
doing the workshop to cover their travel, airfare etc. Without
funds there can be no conference. We also hope to have a French
translator there for the patient conference. We would gladly obtain
funds from other sources but even the ones who do not support our
position are unable to provide us with an alternative. We have
received much positive support for which our Network is grateful.
There was a time that there was no treatment for Fibromyalgia at all
and although we are still only touching the surface of what needs to
be done for the ME/CFS and FMS people, at least now it has started to
pay off after many years of activism by the ME/CFS and FMS
communities. This interest will lead to grants which will lead to
research and that is what is mandatory before a cause and treatment
can be established.
We thoroughly researched the ways that the medical professionals or
others in the health field get their information by having meetings
with them. I know that is not the way it should be but that is how it is.
Lydia
Lydia E. Neilson, M.S.M., Founder
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