Update On “Fair Name Campaign”

Rich Carson, founder of ProHealth & ImmuneSupport, and also one of the leaders in the “Fair Name Campaign” has recently issued an update on the status of the campaign. Rich says,

Not surprisingly, the vast majority of patients favor adopting a new, fair name, as ‘Chronic Fatigue Syndrome’ is universally perceived as trivializing, dismissive, and thoroughly inaccurate. And, while there are a few people who have other preferences, most of you strongly support adopting the acronym ME/CFS.

Rich reports that there have been several in the medical community and patient organizations who have started adopting the ME/CFS name. Some of these include:

• The IACFS voted to change its name to IACFS/ME in January 2007.
• A huge London conference held this month has changed its name to the International ME/CFS Conference.
• Dr. Charles Lapp, researcher and clinician, states that all future research papers will use ME/CFS instead of Chronic Fatigue Syndrome.

When we began the Fair Name Campaign, our intention was to have a vote on whether or not to accept the Name Change Advisory Board’s recommendation of ME/CFS. However, since that time, the campaign has taken on a life of its own, as the use of ME/CFS in both the medical and patient communities is growing steadily. Therefore, we are shifting our focus, from a vote to implementation of the name that is increasingly being recognized and accepted – ME/CFS – and moving forward with the guidance of respected patient leaders.

Rich says it is important that the name change effort has to be driven by patients, patient organizations and the medical community. Several leaders have stepped up and taken this campaign seriously.

For those of us with ME/CFS blogs, I think we should start adopting the new name as well. I will start referring to Chronic Fatigue Syndrome as ME/CFS from now on.

A lot of people have wondered why in the world such a big deal is being made about a name. Some ME/CFS patients have said that the time should be spent on research instead of worrying about a name change. To clear up any confusion this campaign has caused, Rich wants people to know:

The sole intent and purpose of the Fair Name Campaign is to give patients a respectable name for their illness. Studies have proven that patients diagnosed with Chronic Fatigue Syndrome are not taken as seriously as patients with the same symptoms but a different name for their diagnosis. The CFS name not only affects the quality of treatment patients receive, but it also affects the amount of money committed to research. Its hard to convince those funding research to spend their money on people they think are just tired all the time. Patients deserve to be taken seriously, to have a name for their illness that preserves their dignity, and to receive appropriate medical care.

The ME stands for Myalgic Encephalopathy, which a disease of the brain; especially one involving alterations of brain structure. One other concern has been addressed by Rich about ME/CFS patients who are afraid that the Myalgic Encephalopathy label will categorize them into people who have mental disorders. Rich and other leaders have talked with several medical experts and they all assuredthem that Myalgic Encephalopathy refers to an organic brain disorder and in no way includes mental disorders.

Do you wantto get involved in the “Fair Name Campaign? If youd like to sign the petition or volunteer to help, or submit a comment or question, you can do so now on the Fair Name Campaign Web site.