I’ve spent my working life covering neglected(被忽视的) issues. But few are neglected like the devastating(毁灭性的) chronic(慢性的) condition ME/CFS (myalgic encephalomyelitis, or chronic fatigue syndrome). In severe cases, the illness shuts down people’s lives almost entirely, causing an extreme loss of energy and a wide range of physical and cognitive symptoms that can prevent patients from working, socialising and, sometimes, even moving or eating.(在严重病例中，这种疾病几乎完全关闭了患者的生活，导致极度精力丧失以及一系列身体和认知症状，使患者无法工作、社交，有时甚至无法移动或进食。) Yet these people have been more or less airbrushed from our minds(从意识中被抹去).
我整个职业生涯都在报道被忽视的议题。但很少有议题像ME/CFS（肌痛性脑脊髓炎，又称慢性疲劳综合征）这种毁灭性的慢性病一样被忽视。在严重病例中，这种疾病几乎完全关闭了患者的生活，导致极度精力丧失以及一系列身体和认知症状，使患者无法工作、社交，有时甚至无法移动或进食。然而，这些人几乎被从我们的意识中抹去了。
To find out what this neglect looks like in practice, this week I put out a call(发出呼吁) on Bluesky asking people with ME/CFS about their recent experiences of treatment. I was immediately inundated(被淹没) with horrifying testimonies(证词). “I’ve just been completely abandoned”; “a 10-year waiting list for treatment”; “we’ve given up seeking medical support”; “stuck in limbo(卡在无人问津的境地)”; “I just felt utterly unheard, invalidated(被否定)”. I’ve been sent hundreds of shocking and heart-rending(令人心碎的) accounts.
为了了解这种忽视在实践中是什么样子，本周我在 Bluesky 上发出呼吁，询问 ME/CFS 患者近期的治疗经历。我立刻被大量骇人的证词淹没。“我刚刚被彻底抛弃了”；“治疗等待名单长达十年”；“我们已经放弃寻求医疗支持”；“卡在无人问津的境地”；“我只觉得自己完全不被倾听、被否定”。我收到了数百份令人震惊和心碎的叙述。
Exact numbers are hard to establish(确定), but in the UK alone, an estimated 400,000 people live with the condition(患有这种疾病). It affects women far more than men, by a ratio of about 4:1, according to a study in England. The number of people with long Covid, some of whom meet the diagnostic criteria for ME/CFS, was estimated in 2024 at 2 million in England and Scotland.(2024 年，英格兰和苏格兰的长新冠患者人数估计为 200 万，其中一些人符合 ME/CFS 的诊断标准。)
确切数字难以确定，但仅在英国，估计就有 40 万人患有这种疾病。根据英格兰的一项研究，女性患者远多于男性，比例约为 4:1。2024 年，英格兰和苏格兰的长新冠患者人数估计为 200 万，其中一些人符合 ME/CFS 的诊断标准。