聊台灣論壇–聊台灣的大小事 Talk everything about Taiwan

[1] (https://www.familydoctor.cn/news/jitong-xing-naojisuiyan-manxingpilaozonghezheng-201640.html#cite_note-IOM2015-1): 20
肌痛性腦脊髓炎/慢性疲勞綜合征（ME/CFS）是一種致殘性慢性疾病。 患者會出現休息無法緩解的嚴重疲勞、睡眠障礙以及記憶或注意力問題。 標誌性癥狀是勞累後不適（PEM），即使進行輕微體力或腦力活動後癥狀可能數小時至數天后惡化，持續時間可達數小時至數月。 其他常見癥狀包括直立性頭暈或暈厥前兆及疼痛。 [3] (https://www.familydoctor.cn/news/jitong-xing-naojisuiyan-manxingpilaozonghezheng-201640.html#cite_note-CDCsym2024-3)[10] (https://www.familydoctor.cn/news/jitong-xing-naojisuiyan-manxingpilaozonghezheng-201640.html#cite_note-IQWiG-2023-10)
該病病因尚不明確。 [11] (https://www.familydoctor.cn/news/jitong-xing-naojisuiyan-manxingpilaozonghezheng-201640.html#cite_note-CDC_Clinical2024-11) ME/CFS常在單核細胞增多症等感染后發生，[12] (https://www.familydoctor.cn/news/jitong-xing-naojisuiyan-manxingpilaozonghezheng-201640.html#cite_note-Bateman-2021-12) 且可能具有家族遺傳傾向。 [13] (https://www.familydoctor.cn/news/jitong-xing-naojisuiyan-manxingpilaozonghezheng-201640.html#cite_note-Dibble_McGrath_Ponting_2020_p.-13) 該病與神經系統、免疫系統和能量代謝異常相關，[14] (https://www.familydoctor.cn/news/jitong-xing-naojisuiyan-manxingpilaozonghezheng-201640.html#cite_note-pmid38443223-14) 診斷基於特徵性癥狀與排除診斷，因尚無特異性檢測手段。 [7] (https://www.familydoctor.cn/news/jitong-xing-naojisuiyan-manxingpilaozonghezheng-201640.html#cite_note-pmid37226227-7)[15] (https://www.familydoctor.cn/news/jitong-xing-naojisuiyan-manxingpilaozonghezheng-201640.html#cite_note-15)
ME/CFS癥狀可隨時間波動，但完全康復較為罕見。 [12] (https://www.familydoctor.cn/news/jitong-xing-naojisuiyan-manxingpilaozonghezheng-201640.html#cite_note-Bateman-2021-12)[16] (https://www.familydoctor.cn/news/jitong-xing-naojisuiyan-manxingpilaozonghezheng-201640.html#cite_note-16) 尚無特異性療法，治療以緩解癥狀為主。 [2] (https://www.familydoctor.cn/news/jitong-xing-naojisuiyan-manxingpilaozonghezheng-201640.html#cite_note-NICE2021-2)： 29 活動節奏管理（Pacing）可避免癥狀惡化，心理諮詢有助於應對疾病。 [8] (https://www.familydoctor.cn/news/jitong-xing-naojisuiyan-manxingpilaozonghezheng-201640.html#cite_note-CDC2024manage-8) 疫情前該病影響0.2%-0.9%人口，[9] (https://www.familydoctor.cn/news/jitong-xing-naojisuiyan-manxingpilaozonghezheng-201640.html#cite_note-Lim2020-9) 而長新冠患者中近半數符合ME/CFS診斷標準。 [17] (https://www.familydoctor.cn/news/jitong-xing-naojisuiyan-manxingpilaozonghezheng-201640.html#cite_note-Davis-2023-17) 女性患病率更高，可發生於任何年齡包括兒童。 [18] (https://www.familydoctor.cn/news/jitong-xing-naojisuiyan-manxingpilaozonghezheng-201640.html#cite_note-CDC_Basics-18)
該病具有顯著社會經濟負擔，約四分之一患者臥床或居家。 [10] (https://www.familydoctor.cn/news/jitong-xing-naojisuiyan-manxingpilaozonghezheng-201640.html#cite_note-IQWiG-2023-10)： 3 患者常面臨汙名化，醫療照護受爭議影響。 [20] (https://www.familydoctor.cn/news/jitong-xing-naojisuiyan-manxingpilaozonghezheng-201640.html#cite_note-Hussein-2024-20) 該病研究經費長期不足，[21] (https://www.familydoctor.cn/news/jitong-xing-naojisuiyan-manxingpilaozonghezheng-201640.html#cite_note-Tyson_2022-21) 且醫生常缺乏相關培訓。 [17] (https://www.familydoctor.cn/news/jitong-xing-naojisuiyan-manxingpilaozonghezheng-201640.html#cite_note-Davis-2023-17)
分類與命名
[22] (https://www.familydoctor.cn/news/jitong-xing-naojisuiyan-manxingpilaozonghezheng-201640.html#cite_note-22)： 564 世界衛生組織自1969年起將ME/CFS歸為神經系統疾
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病。 [22] (https://www.familydoctor.cn/news/jitong-xing-naojisuiyan-manxingpilaozonghezheng-201640.html#cite_note-22)： 564 神經系統受累表現為腦幹結構改變、代謝異常[44] (https://www.familydoctor.cn/news/jitong-xing-naojisuiyan-manxingpilaozonghezheng-201640.html#cite_note-Maksoud2020-44); 免疫細胞異常則表現為NK細胞功能下降[49] (https://www.familydoctor.cn/news/jitong-xing-naojisuiyan-manxingpilaozonghezheng-201640.html#cite_note-pmid31727160-49)。 該病也被視為感染后綜合征，與長新冠、萊姆病后綜合征共用相似癥狀與病理假設。 [25] (https://www.familydoctor.cn/news/jitong-xing-naojisuiyan-manxingpilaozonghezheng-201640.html#cite_note-pmid35585196-25)
命名爭議持續存在：患者普遍反對"慢性疲勞綜合征"這一名稱，認為其淡化疾病嚴重性[1] (https://www.familydoctor.cn/news/jitong-xing-naojisuiyan-manxingpilaozonghezheng-201640.html#cite_note-IOM2015-1)： 234，而"肌痛性腦脊髓炎"中的炎症表述又缺乏病理證據[28] (https://www.familydoctor.cn/news/jitong-xing-naojisuiyan-manxingpilaozonghezheng-201640.html#cite_note-BMJbest_practice3-28)： 3 2015年美國國家醫學院建議更名為系統性勞累不耐受病（SEID），但未被廣泛採納。 [1] (https://www.familydoctor.cn/news/jitong-xing-naojisuiyan-manxingpilaozonghezheng-201640.html#cite_note-IOM2015-1)
臨床表現
[3] (https://www.familydoctor.cn/news/jitong-xing-naojisuiyan-manxingpilaozonghezheng-201640.html#cite_note-CDCsym2024-3)[2] (https://www.familydoctor.cn/news/jitong-xing-naojisuiyan-manxingpilaozonghezheng-201640.html#cite_note-NICE2021-2): 57
核心癥狀
持續性疲勞具有勞累不耐受特徵，體力、腦力、情緒或社交活動后均可能惡化，休息緩解有限。 部分患者描述為「流感樣」感受，肌肉力量驟降導致協調障礙。 [2] (https://www.familydoctor.cn/news/jitong-xing-naojisuiyan-manxingpilaozonghezheng-201640.html#cite_note-NICE2021-2): 12
勞累后不適（PEM）表現為體力/認知/情緒活動觸發的多系統惡化，包括疲勞加劇、流感樣癥狀、疼痛、胃腸功能紊亂及睡眠障礙。 [10] (https://www.familydoctor.cn/news/jitong-xing-naojisuiyan-manxingpilaozonghezheng-201640.html#cite_note-IQWi:2023-10)： 6 活動如購物、沐浴甚至刺激環境暴露均可誘發，潛伏期12-48小時，持續數小時至數月[33] (https://www.familydoctor.cn/news/jitong-xing-naojisuiyan-manxingpilaozonghezheng-201640.html#cite_note-CDC_strategies2024-33)。
非恢復性睡眠表現為夜間睡眠效率降低、REM睡眠延遲及睡眠週期紊亂[47] (https://www.familydoctor.cn/news/jitong-xing-naojisuiyan-manxingpilaozonghezheng-201640.html#cite_note-pmid36948138-47)，部分患者出現失眠或嗜睡。
認知功能障礙（"腦霧"）涉及資訊處理遲緩、語言障礙及注意力缺陷，神經心理學測試顯示視覺短時記憶、反應速度和閱讀速度下降。 [34] (https://www.familydoctor.cn/news/jitong-xing-naojisuiyan-manxingpilaozonghezheng-201640.html#cite_note-pmid35140252-34)
直立性不耐受包括站立或坐位時頭暈、噁心和認知障礙，部分發展為體位性心動過速綜合征（POTS）[10] (https://www.familydoctor.cn/news/jitong-xing-naojisuiyan-manxingpilaozonghezheng-201640.html#cite_note-IQWiG-2023-10)： 7 或直立性低血壓。 [28] (https://www.familydoctor.cn/news/jitong-xing-naojisuiyan-manxingpilaozonghezheng-201640.html#cite_note-BMJbest_practice3-28): 17
其他常見癥狀
包括疼痛（肌肉、關節、眼部周圍、神經病理性疼痛）、頭痛、消化道癥狀、體溫調節障礙、過敏反應、腦幹功能異常（如噁心、心血管問題）及化學物質敏感。 [3] (https://www.familydoctor.cn/news/jitong-xing-naojisuiyan-manxingpilaozonghezheng-201640.html#cite_note-CDCsym2024-3)
疾病嚴重程度
[2] (https://www.familydoctor.cn/news/jitong-xing-naojisuiyan-manxingpilaozonghezheng-201640.html#cite_note-NICE2021-2)： 8 [[:File:ME_CFS_quality_of_life.png|right|thumb|200px|與20種慢性病比較的生活質量評分]]
按功能受損程度分為四級：

• 輕度：可工作但社交活動受限
• 中度：影響日常活動，需頻繁休息
• 重度：居家，僅限刷牙等有限活動
• 極端重度：完全臥床，喪失自理能力

約25%患者屬輕度，50%為中度至中重度，25%為重度。 [6] (https://www.familydoctor.cn/news/jitong-xing-naojisuiyan-manxingpilaozonghezheng-201640.html#cite_note-pmid37793728-6) 嚴重患者可能喪失語言/吞咽能力，對光、聲等刺激極度敏感。 [2] (https://www.familydoctor.cn/news/jitong-xing-naojisuiyan-manxingpilaozonghezheng-201640.html#cite_note-NICE2021-2): 50
病因
[6] (https://www.familydoctor.cn/news/jitong-xing-naojisuiyan-manxingpilaozonghezheng-201640.html#cite_note-pmid37793728-6)[12] (https://www.familydoctor.cn/news/jitong-xing-naojisuiyan-manxingpilaozonghezheng-201640.html#cite_note-Bateman-2021-12)
60%-80%的ME/CFS病例在病毒感染（如愛潑斯坦-巴爾病毒、流感病毒、水痘帶狀皰疹病毒）后發生。 [28] (https://www.familydoctor.cn/news/jitong-xing-naojisuiyan-manxingpilaozonghezheng-201640.html#cite_note-BMJbest_practice3-28)： 5 遺傳因素涉及多個基因的微效累加效應。 [13] (https://www.familydoctor.cn/news/jitong-xing-naojisuiyan-manxingpilaozonghezheng-201640.html#cite_note-Dibble_McGrath_Ponting_2020_p.-13) 其他觸發因素包括壓力、創傷事件及黴菌暴露。 [10] (https://www.familydoctor.cn/news/jitong-xing-naojisuiyan-manxingpilaozonghezheng-201640.html#cite_note-IQWiG-2023-10): 21
診斷
[7] (https://www.familydoctor.cn/news/jitong-xing-naojisuiyan-manxingpilaozonghezheng-201640.html#cite_note-pmid37226227-7)[56] (https://www.familydoctor.cn/news/jitong-xing-naojisuiyan-manxingpilaozonghezheng-201640.html#cite_note-CDC2020diag-56)
診斷需滿足以下核心標準：

• 持續6個月以上的勞累後不適
• 非恢復性睡眠
• 認知障礙或直立性低血壓[28] (https://www.familydoctor.cn/news/jitong-xing-naojisuiyan-manxingpilaozonghezheng-201640.html#cite_note-BMJbest_practice3-28)： 15

不同診斷標準存在差異，嚴格標準如國際共識標準（ICC）選擇更嚴重患者，而IOM/NICE標準居中。 [32] (https://www.familydoctor.cn/news/jitong-xing-naojisuiyan-manxingpilaozonghezheng-201640.html#cite_note-NICE-2021-D-32): 47
治療
[8] (https://www.familydoctor.cn/news/jitong-xing-naojisuiyan-manxingpilaozonghezheng-201640.html#cite_note-CDC2024manage-8)
治療以癥狀管理為主：

• 活動節奏管理：通過心率監測平衡活動與休息，避免PEM[61] (https://www.familydoctor.cn/news/jitong-xing-naojisuiyan-manxingpilaozonghezheng-201640.html#cite_note-Hoffmann_2024-61)
• 睡眠衛生改善結合藥物
• 多學科疼痛管理，可能涉及神經痛治療
• 認知行為療法與藥物治療心理共患病

需注意患者對中樞神經系統藥物異常敏感[60] (https://www.familydoctor.cn/news/jitong-xing-naojisuiyan-manxingpilaozonghezheng-201640.html#cite_note-60)，且分級運動療法（GET）和傳統認知行為療法已被證明不安全[67] (https://www.familydoctor.cn/news/jitong-xing-naojisuiyan-manxingpilaozonghezheng-201640.html#cite_note-Geraghty_2019-67)。
流行病學
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[9] (https://www.familydoctor.cn/news/jitong-xing-naojisuiyan-manxingpilaozonghezheng-201640.html#cite_note-Lim2020-9) 全球患病率約1/150，女性發病率是男性的1.5-4倍。 兒童患病率略低於成人，青少年高於兒童。 [71] (https://www.familydoctor.cn/news/jitong-xing-naojisuiyan-manxingpilaozonghezheng-201640.html#cite_note-71) 兩大發病高峰為10-19歲和30-39歲[4] (https://www.familydoctor.cn/news/jitong-xing-naojisuiyan-manxingpilaozonghezheng-201640.html#cite_note-pmid31379194-4)。
社會影響
[19] (https://www.familydoctor.cn/news/jitong-xing-naojisuiyan-manxingpilaozonghezheng-201640.html#cite_note-Boulazreg_2020-19) 患者常經歷社會孤立，自殺風險升高。 兒童患者延遲獨立發展，照護者面臨巨大壓力。 [87] (https://www.familydoctor.cn/news/jitong-xing-naojisuiyan-manxingpilaozonghezheng-201640.html#cite_note-87) 美國每年經濟負擔達360-510億美元，英國年負擔33億英鎊。 [89] (https://www.familydoctor.cn/news/jitong-xing-naojisuiyan-manxingpilaozonghezheng-201640.html#cite_note-89)