OOOPS! I GOOFED
by Lydia Neilson
Dear Friends:
At the risk of offending you by sending you yet another email, I also
think I need to explain what happened. The fact of the matter is, I messed up.
As you know, I now have a new mass mailer system which is easier to
operate. "What I failed to tell you is that although it is easier,
you have to know what you're doing. I don't understand all the
commands yet. When I thought I was replying to an individual, I was
actually replying to everyone by using a certain function. The only
good part about that is that this mass mailer is sent out
individually rather than as one big mailer. The only reason another
person's name appears on the email is as it was a mass mailer
response. It is then up to me, to either addresss the individual
alone or send it out as a mass mailer as it concerns everyone.
It has been an extremely busy week and as those who are ill with
ME/CFS and FMS know, when you get physically or mentally tired your
brain shuts off. Unfortunately mine shut off and as a result what I
thought was an individual mailing ended up as a mass mailer instead.
I very well know that none of you want to have this kind of avalanche
of mail and I certainly don't blame you and understand it. I didn't
even realize I did it until I got some kindly reminders telling me
what I had done. I thank you so very much for taking the time for
letting me know but I wanted to reassure all of you that the mailings
are confidential. Before a mass mailer was sent all at once but the
servers are trying to avoid spam and therefore wanted us to change
our method of sending a mass mailer. Now when they receive a mass
mailer from us, it is sent out to each and every individual as a
solitary mailer. Please don't ask me how they do that.
I will try not to send out emails anymore when my brain is in
overload. I now know a bit more about how this all works but you can
call this the week that I goofed. I am sorry for all this.
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
13 years, 11 months
ANNOUNCEMENT - FIBROMYALGIA: RECONNECTING TO WHAT MATTERS. LOOKING AT THE BIG PICTURE
by Lydia Neilson
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
13 years, 11 months
HOW IT IS AND WHAT MATTERS
by Lydia Neilson
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
13 years, 11 months
ANNOUNCEMENT - CHILDREN AT HOME NEED AN EDUCATION, TOO
by Lydia Neilson
Dear Friends:
Yesterday, May 28, 2010 an article appeared in the Ottawa Citizen
newspaper written by James Ron, Associate Professor at the Norman
Paterson School of International Affairs at Carleton University
(carleton.ca/jron). In the article he related that his son diagnosed
with Type 1 diabetes developed some complications and he had to spent
time in the hospital. Given Canada's healthcare system, he stated he
feared the worst but was pleasantly surprised. He related that CHEO
has a one-room school for its patients and went on to praise how his
son was treated. He then went on to say how fortunate we are with
our healthcare as compared to countries like India.
Margaret has considerable experience with the school system and how
children ill with ME/CFS and FMS are ill but usually at home and have
to fight to get an education. She is a relentless advocate on behalf
of children and youth. She took this opportunity to write a
response to James Ron's article which appeared in the Citizen today
(May 29, 2010) and can be seen in its entirety below.
Our President, Margaret Parlor, was able to bring attention to the
children and youth ill with ME/CFS and FMS as well as other disabled
children. Please see her article below in its entirety.
Lydia
Students sick at home need an education, too
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
The Ottawa Citizen May 29, 2010
Re: CHEO's one-room schoolhouse, May 24.
[Note: CHEO is an acronym for the Children's Hospital of Eastern
Ontario located in Ottawa, Ontario]
It was inspiring to read the story about how patients at CHEO receive
their education. An exciting program has been developed which
addresses the health, social and educational needs of young people
who are patients at the hospital.
It is important to recognize that not all young people who are ill
are in hospital. Many are isolated at home, some for months or even
years. There is very little recognition of their needs in the Ontario
education system. No special programs have been developed and
guidelines are virtually non-existent. School boards can even decide
whether or not they provide the student with a visiting teacher. One
school board trustee stated quite simply that, if a student isn't at
school, the student isn't the board's responsibility.
Contrast this to the situation in Britain, where its ministry of
education has developed comprehensive guidelines on access to
education for students with medical needs, school boards are required
to ensure that no student goes without access to education for more
that 15 days, and special online classrooms have been developed to
give isolated students contact with others.
Access to education for students who are ill is a major issue for the
National ME/FM Action Network. Myalgic Encephalomyelitis/Chronic
Fatigue Syndrome and Fibromyalgia Syndrome are frequent causes of
long-term school absence.
Young people who are sick at home in Ontario need educational
programs just as much as students who are sick in hospitals.
It is time to address the educational needs of these young people.
Margaret Parlor, Ottawa
National ME/FM Action Network
Read more:
http://www.ottawacitizen.com/news/Students+sick+home+need+education/30865...
13 years, 11 months
Re: [Nmefman] ANNOUNCEMENT - FIBROMYALGIA: RECONNECTING TO WHAT MATTERS. LOOKING AT THE BIG PICTURE
by Patricia Beurteux
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
> _______________________________________________
> Nmefman-contacts mailing list
> Nmefman-contacts(a)lists.ncf.ca
> http://lists.ncf.ca/mailman/listinfo/nmefman-contacts
13 years, 11 months
ANNOUNCEMENT - FM-CFS.ca
by Lydia Neilson
Hello Everyone:
FM-CFS Canada has been around since its founding in 1996, three years
after our organization started. Please find below an announcement
from FM-CFS Canada. Our President, Margaret Parlor, Director, Lynda
Cregan and I will be attending this event to support their efforts to
help the ME/CFS and FMS communities.
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
FM-CFS CANADA ANNOUNCEMENT
Dear Friends,
As most of you know David and I have been involved with the charity
FM-CFS Canada (<http://www.fm-cfs.ca/>www.fm-cfs.ca) for many years.
We host an informative and award winning website that provides up to
date literature and educational material for patients, caregivers and
medical practitioners who suffer from or treat Fibromyalgia (FM) or
Chronic Fatigue Syndrome(CFS), two very debilitating illnesses. Our
charity is completely volunteer run.
Over the past year we have filmed and compiled a high quality video
that includes interviews with patients, doctors, caregivers and
others which we feel will give supportive and helpful information in
a more visual media compared with pages of text describing symptoms .
We also have developed a web video monthly newsletter dealing with
different topics which we believe are of help to patients.
We invite you to a launch of this video at 523 St Anthony Street on
June 1st (Poster attached with details). The evening is planned to
last a maximum one and half hours (tea, coffee and soft drinks available).
The invitation can also be viewed at
http://www.dunrobincastle.com/VideoProductions/Videos/FMCFS%20Event%20Com...
or on http://fm-cfs.ca
It would be great if you could print the poster and display it around
your area eg. local pharmacy or library. (Set the poster to fit on
one page in your print set up.)
Feel free to pass the information to anyone who you would consider
interested in the topic and invite them to the event.
Elizabeth and David Mann
<mailto:mann.eliz@gmail.com>mann.eliz(a)gmail.com
13 years, 11 months
HISTORY & HIGHLIGHTS OF ACHIEVEMENTS OF THE NATIONAL ME/FM ACTION NETWORK FROM 1993 - 2010
by Lydia Neilson
Dear Friends:
Our Director of Special Projects, Lynda Cregan, has just completed a
manual of the history and accomplishments of the National ME/FM
Action Network from its founding in 1993 to 2010.. The manual is
about 99 pages and is complete with graphics and photos.
Keeping in mind that not everyone can deal with attachments, please
contact me at ag922(a)ncf.ca if you would like me to send you this
manual as an attachment.
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
13 years, 11 months
ANNOUNCEMENT - NEW SITE FOR FIBROMYALGIA & PATIENT DATES IN ONTARIO FOR INFORMATION SESSIONS
by Lydia Neilson
Dear Friends:
I am pleased to let you know that the website, which was built in
support of the Fibromyalgia: Reconnecting to What Matters patient
information sessions, is now LIVE! Please visit
http://www.reconnectingtowhatmatters.ca where you'll find the active
site. Please also note the link to the National ME/FM Action Network
on the left hand side. You will note that our logo is missing at the
moment but we hope to have that amended shortly.
Although these patient sessions are presently scheduled for Ontario
only, that will be amended in the future so be sure to check in to
see new information as the site develops.
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
13 years, 11 months
MAY12 - ANNOUNCEMENT - NATIONAL ME/FM ACTION NETWORK NOW ON FACEBOOK AND TWITTER
by Lydia Neilson
Sugject: National ME/FM Action Network Joins Facebook and Twitter
Now that May 12th ME/CFS and FMS Awareness Day is over, I first of
all would like to remind you that we would like to report the MAY
12th activities that were held around the world. It will probably be
necessary to streamline the report in our newsletters but will also
send out an email on those activities.
I am also pleased to announce that you can now find us on Facebook
at:
http://www.facebook.com/pages/National-MEFM-Action-Network/119761554710463
and on Twitter at: www.twitter.com/mefmaction . Remember that
Facebook and Twitter are very public so don't say anything you do not
wish anyone to know.
We hope that you will take a look and join our pages. We look
forward to connecting with you on these social network sites.
The National ME/FM Action Network is a Canadian non-profit
organization that reaches out around the world and is made up
completely of volunteers. Founded earlier but registered as a
charitable orginization on June 18, 1993, it is dedicated to
advancing the recognition and understanding of Myalgic
Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS) and
Fibromyalgia Syndrome (FMS) through education, advocacy, support, and
research. Our organization seeks to effect positive change in the
attitudes, policies, and practices of government, medical governing
bodies, the legal establishments, business, the media, and the
general public. In addition, a quarterly newsletter is published to
keep you abreast of matters relevant to the ME/CFS and FMS world and
related illnesses. This newsletter is free with an annual membership fee.
We look forward to hosting the 4-day 10th International IACFS/ME
Research & Clinical Conference - Translating Evidence into Practice:
Chronic Fatigue Syndrome, Fibromyalgia, and Related Illnesses in
Ottawa, Canada - Sept. 22 - 25, 2011 at the Crowne Plaza. Its
website is http://www.iacfs.org There will also be a one-day patient
conference on Thursday, September 22nd, 2011. More information is
available on our website www.mefmaction.net.
Lydia
Lydia E. Neilson, M.S.M.
Chief Executive Officer, Founder
National ME/FM Action Network
512 - 33 Banner Road
Nepean, ON K2H 8V7 Canada
Tel. (613) 829-6667 Fax (613) 829-8518
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
13 years, 11 months
