NATIONAL FMS - CFS DATABASE

Researchers say it is hard to find patients for their studies, that recruiting costs them too much of their time and money, even making some studies prohibitively expensive or impossible. Let's all register in a central database to make it easy for research to happen, to make more of the dollars being spent. These databases are securely protected and used for the sole purpose of research and knowledge. Your information will not be sold, traded, given, or viewed by anyone outside of the Database management.

Please Register In The Appropriate Database Below

Fibrohugs takes this Global by including the USA and International Countries. Read More

National Campaign - Answers to Questions
by John Ernst of FM-CFS Canada

Hi everyone,

Many thanks to Ken ( Fibrohugs ) for setting up this forum and to everyone who has volunteered. I am the Executive Director of FM-CFS Canada, which has had Lydia Nielson from the National ME/FM Action Network on our Board for the past two years. We are working with about 30 groups from coast-to-coast, each of whom will be assembling some basic resources for the upcoming Mother's Day campaign.

We are working with Tamara Liller of the National Fibromyalgia Partnership in the US who shares many of our goals, and we'll hopefully see our two countries raise the volume at the same time this Spring.

Pat suggested we have a common letter to send out to Mayors, and we agree. We'll post one on our site for you, and post it here too. Our city's Mayor, (Ottawa) recognized it, and it wasn't a big deal for them. They get allot of such requests, and we're working well in advance so we're in good shape. Please send to john at: office@fm-cfs.ca

We're also asking prominent people, community leaders, church leaders, media personalities, business people, hospital directors, etc., to write a simple and brief letter of Moral Support for our cause. We want to show our government leaders and others that we're not alone. We will post a sample request letter on our site. Once we have more than a 100 letters received in Canada, we're going to package them and redistribute them to groups across Canada, to make it easier to ask even more people to write a letter - the ones you didn't think you could ask the first time. We'll assemble all the second wave of letters with the first and reprint them for each region. This can be a valuable resource to have in-hand when asking for help, from sponsors, the media, etc. Please send to john at: office@fm-cfs.ca

We're also working to build a Faces of FM & CFS campaign, much like those shown in the FMAware magazine. We aim to find young and old, male and female, care-giver and physician, personal stories with photos that we can place in a central site. We want to both break the stigma that suggests you're to hide if you're sick, and we want to help the media find their stories by providing them with a great variety to choose from. We're hoping each region can find five varied stories. Please send to john at: office@fm-cfs.ca

FM-CFS Canada is approaching national retail chains to ask them to place donation containers and informative bookmarks in their stores during the Mother's Day period, for a month. The goal is to create a research fund and educate people. We have already started talking with several major chains.

Also on the research front, we're working to build a single Canadian database so that we can help researchers. At present, they spend too much of their time and research money finding subjects for their studies. By assembling ourselves into an online database, we can begin to help them. We can also work together more easily.

We're also working with a well-respected advertising agency to create a Public Service Announcement for the campaign, and have asked singer Sarah McLachlan to be our celebrity mother - being a woman in the prime of her life, she is at risk of getting these illnesses too. We'll be shipping these PSA across the country.

We have a skilled volunteer already requesting editor info and publishing deadlines for many major magazines. We hope to have common fact sheets and press releases that each region can tailor to send to their local media along with a copy of the moral support letters booklet. We'll post a draft release on our site. It sounds like some of the people on this site have good writing expertise, so perhaps they can help us polish the release so that we're all happy with it.

By the way, we have a Medical Advisory Committee that is reviewing educational information from around the world and Canada to fill in the gaps, and ensure that our collection is entirely physician-reviewed.

Finally, we're preparing a case for government, which can make some of the greatest changes in our lives. We'll have co-signatories from across the country and we'll make sure all of our arguments are presented to show Government how it is in their interest to help us.

In conclusion - we know there are allot of people willing to help this movement if we become more visible and if we work together. We know of some rich people who have the illness who may choose to endow the movement if it is organized like the other major health charities.

Let's make change! Thank you to all.

Cheers,

John Ernst
FM-CFS Canada
613-565.0283
office@fm-cfs.ca