The Painful Truth About Long Covid

The Painful Truth About Long Covid

关于“长新冠”的痛苦真相

Nothing about long Covid adds up. Consider prevalence rates: How could one study find it affected 3.3 percent of the population of the UK but others an alarming 51 percent of South Americans and 86 percent of Egyptians? 关于“长新冠”(Long Covid),一切都令人费解。以患病率为例:为什么有的研究发现它仅影响了英国 3.3% 的人口,而其他研究却显示南美洲有惊人的 51%、埃及有 86% 的人口受到影响?

Or treatment methods: The BMJ’s systematic review of ways to treat long Covid lists two as supported by moderate evidence, cognitive behavioral therapy and physical exercise. But if you attended the third annual Long Covid International Conference in Boston—as I did, late last year—you’d think the BMJ was encouraging medical malpractice. 再看治疗方法:《英国医学杂志》(BMJ)对长新冠治疗方法的系统性综述中,仅列出了两种有中等证据支持的方法:认知行为疗法和体育锻炼。但如果你参加了去年年底在波士顿举行的第三届长新冠国际会议(正如我所做的那样),你会觉得 BMJ 简直是在鼓励医疗事故。

During two days of presentations, the world’s leading scientific authorities brought up exercise only to warn against it. Cognitive behavioral therapy received just one mention: “not recommended.” 在为期两天的演讲中,全球顶尖的科学权威们提到运动时,唯一的目的就是发出警告,劝阻患者进行锻炼。而认知行为疗法仅被提及一次,评价是:“不推荐”。

Then there’s the scientific progress, or lack thereof. Six years since the height of the pandemic, the scientific community remains baffled by long Covid. Researchers still don’t know why some people’s symptoms persist or worsen after the acute phase of SARS-CoV-2 infection has passed. 此外还有科学进展的问题,或者说,根本没有进展。距离疫情高峰期已经过去六年了,科学界对长新冠依然感到困惑。研究人员至今仍不清楚,为什么有些人在新冠病毒感染的急性期过后,症状还会持续甚至恶化。

Almost $2 billion and half a decade of international effort have yielded little more than hypotheses about micro blood clots and spike proteins and mitochondrial dysfunction. There isn’t a single approved pharmaceutical treatment, not even a test to verify the presence of the illness. 投入了近 20 亿美元,经过五年的国际努力,除了关于微血栓、刺突蛋白和线粒体功能障碍的假设外,几乎一无所获。目前还没有一种获批的药物治疗方案,甚至连验证该疾病是否存在的方法都没有。

All of this is very strange. Stranger still are patients’ stories of astonishing recoveries from severe long Covid, achieved entirely outside mainstream medicine. The stories are connected to a growing community of doctors, therapists, and self-styled coaches who insist the riddle of long Covid has been solved. 这一切都非常奇怪。更奇怪的是,一些患者讲述了他们在主流医学之外,从严重的长新冠中奇迹般康复的故事。这些故事与一个日益壮大的群体有关,其中包括医生、治疗师和自封的“教练”,他们坚称长新冠的谜题已经被解开了。

Like so many health gurus, they offer a solution that depends, in part, on your faith in the process. The solution also works for a remarkable variety of ailments—classic red flags for “holistic” pseudoscience and medical charlatanry. 像许多健康大师一样,他们提供的解决方案在一定程度上取决于你对这一过程的信念。这种方案还能治疗各种各样的疾病——这正是“整体疗法”伪科学和医疗骗局的典型危险信号。

If the stories are to be believed, they represent a neglected approach that demands urgent attention. If not, a colossal medical scandal is operating openly, exploiting sick people desperate for answers and relief. 如果这些故事可信,那么它们代表了一种被忽视、亟待关注的方法。如果不可信,那么一场巨大的医疗丑闻正在公开上演,剥削着那些渴望答案和解脱的病患。

It’s the job of the scientific community to solve mysteries like this one. Doing that job effectively, however, has two basic conditions: Researchers must know what they are studying, and they must be free to study it impartially. In the case of long Covid, neither of these conditions has been met, and patients are suffering the consequences. 解决这类谜题是科学界的职责。然而,要有效地完成这项工作,有两个基本条件:研究人员必须知道他们在研究什么,并且必须能够公正地进行研究。就长新冠而言,这两个条件都没有满足,而患者正在承受后果。

One of those patients is a 37-year-old man I’ll call Andrew Larson, who came down with a bad case of Covid-19 in late 2023. After a week in bed, he recovered enough to begin working again. But a month later he noticed something was seriously wrong. Mild exertion like a short walk left his brain foggy and his body exhausted. 其中一位患者是一位 37 岁的男子,我称他为安德鲁·拉尔森(Andrew Larson)。他在 2023 年底感染了严重的新冠肺炎。卧床一周后,他恢复到可以重新工作的程度。但一个月后,他发现情况严重不对劲。轻微的体力活动,比如短距离散步,都会让他感到大脑迟钝、身体疲惫不堪。

Larson pushed through until June 2024, when he did some construction work around the house. The exertion was too much. His body began to shut down, and two weeks later Larson was bedbound. 拉尔森一直硬撑到 2024 年 6 月,当时他在家里做了一些建筑维修工作。这种体力消耗对他来说太大了。他的身体开始崩溃,两周后,拉尔森彻底卧床不起。

Because so little is known about long Covid, sufferers are often dismissed by providers or passed from one skeptical specialist to the next. Symptoms vary dramatically in type and severity, which means one person might experience mild sleep issues and fatigue while another could become completely incapacitated. 由于对长新冠知之甚少,患者往往被医疗服务提供者忽视,或者在不同的怀疑论专家之间被推来推去。症状的类型和严重程度差异巨大,这意味着一个人可能只是经历轻微的睡眠问题和疲劳,而另一个人可能完全丧失行动能力。

In those severe cases, it’s not uncommon for patients to end up in the psych ward. A privileged few land at dedicated clinics, but empathetic doctors can do little more than treat individual symptoms and hope for improvement. 在那些严重病例中,患者最终被送进精神科病房并不罕见。少数幸运儿能进入专门的诊所,但富有同情心的医生也只能治疗个别症状,并祈祷病情好转。

Larson made his way to such a clinic, but he didn’t improve. By late 2024 and into 2025, the once-fit father had been lying motionless and mute in a darkened bedroom for months, pallid and emaciated, unclipped nails like claws, sucking pureed food from a syringe, dependent on a bedpan. Any exertion, even chewing or talking, meant waves of excruciating pain and days of bone-deep exhaustion. 拉尔森设法去了这样一家诊所,但病情没有好转。到了 2024 年底和 2025 年初,这位曾经身体健康的父亲已经在昏暗的卧室里一动不动、沉默不语地躺了几个月。他面色苍白、骨瘦如柴,没剪的指甲像爪子一样,靠注射器吸食流质食物,依赖便盆生活。任何体力消耗,哪怕是咀嚼或说话,都会带来一阵阵剧痛和持续数日的深入骨髓的疲惫。

What energy Larson had went into experimenting with treatments discussed in online support groups and Reddit threads: anticoagulants, antivirals, hydrophilic bile acid, a fortune’s worth of supplements, low-dose naltrexone. 拉尔森仅存的一点精力都花在了尝试在线支持小组和 Reddit 论坛上讨论的治疗方法上:抗凝血剂、抗病毒药物、亲水性胆汁酸、价值不菲的补充剂,以及低剂量纳曲酮(LDN)。

The last produced marginal improvements—“If I hadn’t started LDN, I might have taken my life,” he told me—but he still couldn’t move or mumble more than a few words. 最后一种药物带来了一些微小的改善——“如果我没有开始服用 LDN,我可能已经自杀了,”他告诉我——但他仍然无法移动,也无法含糊地说出几个以上的词。

Medical tests mocked him: normal, normal, normal. To qualify for disability, he traveled hours to a doctor willing to document his deteriorated state. Local physicians had dismissed him, like the neurologist who suggested he was “malingering.” 医学检查结果嘲弄着他:正常,正常,还是正常。为了获得残疾补助资格,他长途跋涉数小时去见一位愿意记录他恶化状况的医生。当地的医生对他不屑一顾,比如那位神经科医生就暗示他在“装病”。

Almost unbelievably, they worked at the same hospital where he, Andrew Larson, PhD, had been doing research just a couple of years earlier. “I’m in an online group with another 20 medical professionals that have long Covid, and everybody has the same experience,” Larson said. “When you cross the line of being a patient, you’re a patient. They couldn’t care less about your credentials.” 令人难以置信的是,他们工作的医院正是他——安德鲁·拉尔森博士——仅仅两年前还在进行研究的地方。“我加入了一个在线小组,里面还有另外 20 名患有长新冠的医疗专业人员,大家的经历都一样,”拉尔森说。“当你跨过那条线成为患者时,你就是患者。他们根本不在乎你的资历。”

(His insurance company has been endlessly skeptical, at one point visiting Larson’s home to confirm his ill health, and he requested anonymity for fear of losing coverage. Some identifying details have been changed.) (他的保险公司一直持怀疑态度,甚至曾派人到拉尔森家中核实他的病情。由于担心失去保险,他要求匿名。文中部分身份信息已作修改。)

His wife, also a medical professional, became frantic. She thought Larson must be mentally ill—despite clear physical symptoms like inflammatory arthritis—and urged him to try antidepressants. He refused. Nevertheless, she continued to seek out alternative approaches and eventually secured a Zoom appointment with an unusual doctor she found online. 他的妻子也是一名医疗专业人员,她变得非常焦躁。尽管他有炎症性关节炎等明显的身体症状,但她还是认为拉尔森一定是精神出了问题,并敦促他尝试抗抑郁药。他拒绝了。尽管如此,她还是继续寻找替代疗法,并最终通过网络预约了一位她在网上找到的“非典型”医生进行 Zoom 会诊。

Becca Kennedy was the former lead of a multistate long Covid specialty group for Kaiser Permanente. She had met hundreds of patients with similar symptoms and stories. “People are really suffering,” Kennedy said. “Their symptoms are real. But if we want to help them, we need to understand the source of their suffering.” 贝卡·肯尼迪(Becca Kennedy)曾是凯撒医疗集团(Kaiser Permanente)一个跨州长新冠专业小组的负责人。她见过数百名有类似症状和经历的患者。“人们确实在受苦,”肯尼迪说。“他们的症状是真实的。但如果我们想帮助他们,我们需要了解他们痛苦的根源。”

Kennedy can barely contain her fury when she discusses mainstream theories of long Covid. 当谈到关于长新冠的主流理论时,肯尼迪几乎无法抑制自己的愤怒。