Advocacy Archives: Advocacy
Results of Recent
Poll on the Name Change Work Group
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).
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,
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.
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.
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