幅広い多くの人から病名変更の必要性や上記の病名候補に対する考えを取り入れることを目的として、2001.1に”病名変更”調査アンケートが作成され、第3者機関に幅広く配布されました。このアンケートは、2001.1にワシントンで開かれたAACFSの年次大会において、また多くのウェブサイトやリストサーバーを通じて配布されました。この会議期間中に会議参加者から108件、会議後に郵送されたものが324件、合計432件のアンケートを頂くことができました。その主な集計結果を以下に示します。
アンケート回答者
患者：69％
患者の家族：10％
臨床医：9％
研究者：12％
ほとんどの回答者(86%)が、現在、病名を変更してほしいと思っており、それぞれに占める割合は以下になります。
患者の92％
患者の家族の86％
臨床医の74％
研究者の53％
NEID、ME等の病名の使用を認めますか、という設問に対しては、上記の4グループでは、次のような結果となりました。NEIDとMEの二つが有力ではありますが、特定の病名だけを認めるという総意は得られませんでした。
ME NEID
患者：57％ 62％
患者の家族：50％ 44％
臨床医：47％ 59％
研究者：35％ 34%
また、多くの候補の中から病名を一つだけ選ぶとしたら、何を選びますか、という設問に対しては以下の結果が得られました。上記の結果と同様に、医師、患者ともにMEとNEIDの二つにはっきりと分かれていることが分かりました。
MEを選んだ人の割合 NEIDを選んだ人の割合
患者： 38％ 46％
患者の家族： 37％ 49％
臨床医： 44％ 41％
研究者： 48％ 31％
上記の表中のMEとはME（Myalgic Encephalopathy）とその類似した病名のことです。設問中の選択肢の中には”その他”という選択肢があり、その中にはMyalgic Encephalomyelitisやその他の類似した病名が記されています。上記表の”MEを選んだ人の割合”には、それらの類似した病名を選択した方も含まれています。
Polyalgic AstheniaやRamsay's Disorderのような他の病名を支持しますか、という設問に対しては、支持すると答えた人の割合は、どちらも5％以下でした。
回答者がどれだけ強くMEまたはNEIDを支持しているかを知るため、アンケート結果を整理し、回答者が第一の選択肢として、MEまたはNEIDを選んだかどうか検討を加えました。新しい病名としてこの2つのうちの一方を選んだ回答者の内、もう一方の病名も支持していたのは回答者の30%以下でした。
この調査の結果は、病名変更を強く望んでいる人たちの中に異なった考え方があることを示唆しています。今回の結果から、多くの回答者が病名を変更すべきであると考えていることが再度明らかになりました。病名変更作業委員会は、病名変更の問題に関して提案が行えるよう、幅広く第3者から情報を求めて行く予定です。これまでの色々な情報を委員会で検討した結果、NEIDという頭文字からは、多くの悪い言葉が連想され、この病名と診断されることで患者に不利益が生じる可能性があることがわかってきました。委員会では、従って、このような特定の頭文字を持つ病名は候補とすることができません。現在、委員会では、問題のある頭文字を持たない、その他の医学的な病名を考案、検討しており、これらの考えを皆さんに早くお知らせできばと考えています。
翻訳：Co-Cure-Japan, Jp-Care
Name Change Workgroup Interim Report
The Department of Health and Human Services' Chronic Fatigue Syndrome Coordinating
Committee appointed a Name Change Workgroup during the summer of 2000 to
consider changing the name of Chronic Fatigue Syndrome to a name which
more accurately reflects both the severity of the disease and the organ
systems affected by the disease due to the widely held belief that the
CFS name has lead to many misperceptions regarding the disease. The
Workgroup began to have regular meetings primarily by telephone conference
calls. The Workgroup agreed that there was a need to develop
a new name, and that the name should not be limited to a single symptom,
as had been done with the name chronic fatigue syndrome. At the State
of the ScienceCFS meeting in Washington during October of 2000, the Workgroup
had a chanceto meet in person to discuss potential names that might be
adopted: The name NEID (Neuro-Endocrine Immune Disorder) was developed
as one possibility, as there was evidence of dysfunction in the Neurological,
Neuro-Endocrine and Immunological functioning in patients stricken by this
disease. In addition, there was also interest in considering the
name Myalgic Encephalopathy (ME) or a version of this name. It should
be noted that ME/CFS has been defined differently by various defining
criteria including Oxford, Ramsey, and Fukuda, and the Oxford ME criteria
does specify a group of symptoms that are different from the current
Fukuda et al. (1994) CFS criteria. Two other kinds of names
were also considered: Polyalgic Asthenia, a name based on symptoms, and
Ramsay's Disorder, an eponym. In an effort to collect information
from a wide variety of individuals on their existing feelings regarding
the need for a name change and these name change candidates, a "Name
Change" survey questionnaire was developed in Jan of 2001 to be broadly
disseminated to the various stakeholder groups.
This questionnaire was distributed at the American Association of Chronic
Fatigue Syndrome's (AACFS) biannual convention in Washington in January
2001, as well as through various Internet websites and listservs during
early February. At the AACFS conference, 108 questionnaires were
completed by conference participants, and an additional 324 questionnaires
were filled out after the conference and mailed in either by Internet email
or hard copy. Therefore, the sample consists of 432 respondents.
Below is a summary of the major results of the data collected from the
questionnaire.
Of those filling out questionnaires:
69% were Patients
10% were Family Members of Patients
9% were Professionals involved in the Clinical Care of Patients
12% were Professionals actively conducting Research related to this disease
Most respondents (86%) indicated that they wanted a name change at this
time:
92% of Patients
86% of Family Members
74% of Clinical Care Professionals
53% of Research Professionals
There does not appear to be a consensus supporting one specific name, although
two names were at the forefront: NEID and ME. When respondents
were asked whether they would support the use of a name like ME or NEID,
the four groups indicated they would support the names with the following
percentages:
ME NEID
Patients 57% 62%
Family Members 50% 44%
Clinical Care Professionals 47% 59%
Research Professionals 35% 34%
It is also apparent that the patients and physicians are clearly split between
adopting a name like ME and NEID. When asked if they had to choose one
name, respondents reported:
Patients
38% selected ME and 46% selected NEID
Family Members
37% selected ME and 49% selected NEID
Clinical Care Professionals 44% selected ME and
41% selected NEID
Research Professionals
48% selected ME and 31% selected NEID
For the figures above, the ME term referred to Myalgic Encephalopathy or
a name like it; the survey also contained a category to list "other"
names, and if respondent used the term Myalgic Encephalomyelitis or a term
like this in the "other" category, it was included in the count
for ME.
We also asked respondents to indicate their support for other names, like
Polyalgic Asthenia and Ramsay's Disorder, but less than 5% of respondents
supported either of these names.
To derive a measure of how strongly respondents felt about their selections
for ME or NEID, the questionnaire data were tabulated to discover whether
respondents who selected ME or NEID as their first choice when asked to
pick one name were likely were they to say that they would support the
otherchoice. For those respondents who selected either of these two
choices for a new name, less than 30% of those respondents would support
the other name.
The survey suggests that there are different stakeholders with strong feelings
about changing the name. It is encouraging to learn from this sample that
the majority of respondents do feel that the name should be changed at
this time. The Name Change Workgroup will continue to solicit
information from various stakeholders as we proceed to develop a recommendation
regarding the name change issue. Based on the input that we have
received, it is now clear to the Workgroup members that the acronym "NEID"
has too many negative connotations associated with it which might be detrimental
to the perception of patients with the disease, therefore, we will not
be recommending a name with this particular acronym. However,
we still are working to develop and consider other related scientific names
that do not have problemmatic acronyms. We hope to be able
to share these ideas with the various stakeholders soon.
Sincerely,
Members of the Name Change Workgroup