Act Now!

If we who are affected by ME/CFS have learned nothing else, we've learned that waiting for the rest of the world to take care of us doesn't get us very far.

It is the goal of this ME-CFSCommunity to unite and organize the ME/CFS patients into a viable political force for change in our governments attitudes towards research funding as well as the attention paid to us by the medical and insurance communities.

Until, we who are affected by ME/CFS, act consistently and regularly for our own future we can expect no more than to be blown by the winds of circumstance.

Here's some of the steps that you can take at least once a month to help:

1. Make sure that everyone you know with ME/CFS joins at least one organization or website devoted to ME/CFS, M.E., or whatever else you choose to call that group of diseases which affects our lives.

There are at least 1,281,000 people in the U.S. who are affected by ME/CFS. The best estimate is that only 217,770 have thus far been diagnosed. There are only a dozen or so organizations devoted to serving our community. The best estimate is that not even 10% of the confirmed patient community has joined an organization. Worldwide, the figures are even more appalling.

The single most effective thing we can do to change the environment we live in is to make sure that everyone we know with the disease joins at least one dedicated ME/CFS organization. In that way you are helping to strengthen not only the specific organization you choose but the entire network of activities and organizations they participate in.

2. Make your government representatives aware.

Write, call or visit your government representatives. Don't just do it once, however, do it consistently, at least once a month. Make yourself, and your cause, heard.
Governmental contact information is listed below by country (if your country is not listed below, or you wish to add another appropriate contact please identify and send the appropriate information to editor@cfsKnowledgeCenter.com and it will be published here).

Australia:
Parliament of Australia Contacts
Minister for Human Services
Department for Health and Aging

Canada:
Prime Minister Contact Information
Canadian Parliament
Members of Parliament
Minister of Health

New Zealand:
Prime Minister & Cabinet
New Zealand Parliament
Ministry of Health
Other Ministries & Agencies

United Kingdom:
Prime Minister
Parliament, MPs
Parliament, Lords
Healthcare Commission

United States:
President
Vice President
U.S. Senators
U.S. Representatives
U.S. House Appropriations Committee
U.S. House Budget Committee
U.S. Ways and Means Committee
President's Healthcare Reform Initiative
Department of Health & Human Services
National Institutes of Health (NIH)
Center for Disease Control (CDC)

3. Contribute money to your favorite ME/CFS Organization.

Not a single ME/CFS organization or website is awash in funds. We are all scrapping by as best we can. Many of us have ideas and initiatives we want to share with, or provide to, our community but simply don't have the resources to with which to do it.
For those who may wish to contribute to this website, please click on HELP US HELP YOU.

4. Contribute your time and talents to your favorite ME/CFS Organization.

The easiest step to take is just to participate in the organization (s) of your choice. Discussions on their websites, blogs, chat rooms and events are an important way to help strengthen them. So, too, is volunteering to write letters and articles, or compiling data or any one of a hundred other tasks that go into establishing, strengthening and developing an organization.
For those who wish to contribute their time and energy to this ME-CFSCommunity please email: editor@cfsKnowledgeCenter.com. We are currently seeking assistance with:

- Essays and article submissions
- Data base compilation
- Discussion monitors
- National ME-CFSCommunity coordinators
- Translation services

5. Tell a friend about what ME/CFS really is.

- Tell someone you know, who is not aware of your disease, about the disease
- Email a link to an ME/CFS video, like those HERE, to a friend.
- Add a tag line to your email with a link to an ME/CFS organization or website

6. Educate a health care provider.

See that your health care provider gets a copy of the New Jersey Consensus Manual for Physicians in English (also available in Japanese) or Canadian Consensus Documents for ME/CFS and FMS.

7. Participate in the Advocacy discussion at the Forum.

Get involved in the discussions of your fellow community members. Contribute your own comments and suggestions for action.

Got any other ideas? Send them to editor@cfsKnowledgeCenter.com. We'll keep adding to the list.