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A New Year, A New Name

  [ 10 votes ]   [ 3 Comments ]
www.ProHealth.com • November 11, 2008


Two years ago ProHealth's founder Rich Carson asked a simple question, “Is it time for a name change?”

His question met with an enthusiastic response and became the seed for what is now called the ME/CFS Fair Name Campaign – an effort to discontinue the use of the trivializing and inaccurate name 'chronic fatigue syndrome' and replace it with ME/CFS, the name recommended by an Advisory Board* made up of top researchers and clinicians in the field.

Just getting the word about the name change out has had positive results. We've already seen a noticeable increase in the use of ME/CFS both on the Internet and in research papers. But now it's time to kick the campaign into full gear. In January the ME/CFS Fair Name Campaign will be unveiling a new, more in-depth Web site. In addition to more information about the name change effort, there will be slogan and video contests with cash prizes, and a store where you can get t-shirts, mugs, bumper stickers and other items to promote the name change. We may even have a surprise or two up our sleeves.

Once the new Web site has been launched, we'll issue a press release and begin mass e-mail campaigns to reach more patients, families, support groups, researchers and clinicians with information about the importance of the name change. As Dr. Charles Lapp said, “This [name change] is not going to come from the government; it's not going to come from researchers; it has to come from the grassroots.”

A small group has been working behind the scenes for several months, laying the groundwork. But we need your help to make the campaign a success.

• Do you have experience in public relations work?

• Have you coordinated volunteer efforts before?

• Are you good at letter writing?

• Are you willing to help gather contacts and send e-mails?

If you would like to help, please e-mail us at info@afairname.org telling us what you're interested in helping with.

A new year is just around the corner. Let's make 2009 the year that the name chronic fatigue syndrome is relegated to medical history books and ME/CFS is recognized as the serious illness it is.

Note: Many of you have been following the campaign since it began, but if this is new to you, or you'd just like to review what the name change effort is all about, please read “The Right Name, the Right Strategy, the Right Time” by Dorothy Wall.

- FNC Coordinating Committee

___
* Fair Name Campaign Advisory Board members: Drs. Lucinda Bateman, David Bell, Paul Cheney, Leonard Jason, Nancy Klimas, Anthony Komaroff, Charles Lapp, and Daniel Peterson.




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A Fair Name
Posted by: franktwisk
Nov 21, 2008
In the Netherlands we have called ourselves Myalgic Encephalomyelitis patients for the last 15 years. If you want to change the name to ME that's great. If ME also can be interpreted as Myalgic Encephalopathy (as you have proposed several times on your website) introducing ME means the end of ME! (70 years scientific literature, juridicial rights, ..). The WHO does not acknowledge Myalgic Encephalopathy! The only fair name is Myalgic Encephalomyelitis. As long as your committee does not make a clear choice, giving ME the only connotation is has to have, ME/CFS is not a fair name. Frank
Reply Reply

A New Year a New Name
Posted by: frostymocha
Nov 22, 2008
Bless all of you for your vision and perseverance.
Reply Reply

A Fair Name
Posted by: daffyduck123
Nov 27, 2008
Hi, What difference does it make to have CFS tagged to the end of M.E? M.E. is totally foreign to me in Australia, however, to give the name credibility I am happy to change names and look forward to precluding M.E. to CFS. Sadly when I use this name, people have no idea what I am talking about. So I find myself constantly explaining. Very few have even heard of CFS. I do find though that when I do use all the initials, people take me more seriously and don't brush me off like an irritating fly. Regards, Carol Berowra Heights Australia.
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