Media Alert:  3/12/2002


The results of the name change questionnaire that was distributed in the fall of 2001 have now been analyzed, and below is a report of the major findings.  There were 671 questionnaires returned that were capable of being analyzed. There were an additional 46 questionnaires that were sent to us with comments on them, but the questionnaires items were not answered. In addition, we received a package with more than 3,500 signatures on a petition to recognize the name Myalgic Encephalomyelitis.  Our group also did receive a poll that was conducted from the email discussion and support email list CFS_Mycoplasma, but as we did not receive the number of people who filled out this poll, nor do we know whether these individuals also sent in individual responses to the name change questionnaire, we were not able to count these responses. We did read the feedback that all groups provided to us.

Of the 671 questionnaries, 57% were sent to the workgroup via the internet, and 43% were sent by regular mail.  By country of origin, 89.4% were from the US, 4.5% from Western Europe, 3.4% from Australia, 0.1% from African/South Africa, 0.3% from Asia, and 1.5% from Canada (0.7% did not indicate their country of origin).

Of the respondees, 73.3% were patients, 13.3% were physicians or heallth care professionals, 3.3% were researchers, and 10.1% were family members or friends (one person did not specify a response to this item).

When asked whether the name should be changed now, 91.5% of the respondents agreed with an affirmative answer.   After reading the recommendations, 75.6%
either agreed or strongly agreed with them.  In addition, 65.6% of respondents strongly agreed or agreed that the term, Chronic Neuroendocrineimmune Dysfunction Syndrome (CNDS) was acceptable.

In addition,  9.5% of respondents indicated that the word "chronic" should be deleted, 4.9% indicated that the word "syndrome" should be deleted, and 1.2%  said that the word "dysfunction" should be deleted.

In the near future, the name change work group will be releasing a brief document that attempts to answer many of the questions that have been posed by individuals and groups concerning our draft name change recommendation document.  A revision of the name change recommendation document will be released by the workgroup in the future, taking into account the many helpful suggestions that have been made by respondents.

The CFIDS Association of America