幸存者偏差
Mike Cherim has never had Covid-19 himself. No one in his inner circle of family and friends has come down with the virus. But the 58-year-old New Hampshire resident serves as the administrator of Covid-19 Support Group, a Facebook group with more than 12,000 members, many who have the virus or have recovered from it.
中号 IKE Cherim从未有过Covid-19自己。 在他的家人和朋友的圈子里，没有人感染这种病毒。 但是现年58岁的新罕布什尔州居民是Covid-19支持小组的管理员， Covid-19支持小组是一个Facebook团体，成员超过12,000，其中许多人感染了病毒或已经从中恢复了病毒。
Cherim never meant to become a moderator of sensitive health information. A justice of the peace in New Hampshire’s White Mountains region who also runs a mountain guiding agency, he has no experience as a therapist, a medical professional, or a counselor. Regardless, he started the Facebook group back in late March, a day before New Hampshire issued its stay-at-home order and Cherim was forced to shut down his business. At the time, he was hoping to create a space for a wider audience, including people who were out of work, friends or family members of Covid-19 patients, and those struggling from social isolation.
Cherim从未打算成为敏感健康信息的主持人。 他是新罕布什尔州怀特山脉地区的一位和平大法官，他还经营一家山地向导，他没有治疗师，医学专家或顾问的经验。 无论如何，他还是在3月下旬(新罕布什尔州发布其全屋服务订单)和Cherim被迫关闭其业务的前一天成立了Facebook小组。 当时，他希望为广大观众创造一个空间，其中包括失业者，Covid-19患者的朋友或家人，以及那些因社交孤立而挣扎的人们。
“But somehow or another, it became a group for people who are suffering from Covid-19,” he says. Which is why Cherim, who used to mainly officiate weddings, now spends his mornings poring over deeply personal accounts of those living with the virus.
他说：“但是无论如何，它成了一群受Covid-19折磨的人们的群体。” 这就是为什么以前主要主持婚礼的Cherim现在花大量的时间仔细研究那些感染病毒的人的个人经历的原因。
There are a handful of private U.S.-based Facebook support groups devoted to the coronavirus that, like Cherim’s group, have 10,000 members or more. Moderating them is a challenge: Members frequently post when their recovery has made a turn for the worse, which can be emotionally taxing for others to read. And with so little known about the virus, some members rely on each other to decode symptoms, decide whether to go to the hospital, and understand whether what they’re experiencing is “normal.” Combating misinformation and detecting scams can be difficult. Some groups, like Cherim’s, ban medical advice, links to crowdfunding pages, or promotion of sham cures. Others are managed in a looser fashion.
有少数专用于冠状病毒的美国私人Facebook支持小组，与Cherim的小组一样，拥有10,000或更多的成员。 对它们进行审核是一个挑战：成员经常在其恢复情况变得更糟时发布消息，这在情感上使其他人难以阅读。 由于对该病毒知之甚少，一些成员相互依靠以解码症状，决定是否去医院并了解他们所经历的是“正常的”。 打击错误信息和检测骗局可能很困难。 切里姆(Cherim)等一些组织禁止提供医疗建议，链接到众筹页面或推广假药。 其他人则以宽松的方式进行管理。
OneZero spoke to four moderators and four members of a variety of Facebook support groups, all of whom painted a picture of an online community that can sometimes be helpful but has rapidly grown to a size where it’s difficult to control. New people join every day and ask the same questions. Some members join because they want tips on beating the virus, even if they’re from nonexperts, and others realize that’s dangerous and will condemn it in the comments.
OneZero与Facebook支持小组的四名主持人和四名成员进行了交谈，他们全部描绘了一个在线社区的图片，该社区有时可能会有所帮助，但Swift发展到难以控制的规模。 每天都有新成员加入，并提出相同的问题。 一些成员加入是因为他们想要打败该病毒的技巧，即使他们来自非专家，其他成员也意识到这很危险，因此会在评论中予以谴责。
Many of the people who first joined Cherim’s group merely wanted to better understand what they were experiencing. “I just tested positive for covid-19 today,” wrote one new member on June 30. “Does anyone else have a continuous headache it won’t stop [sic] Any advice of what to take. I’m taking DayQuil and NyQuil I have Tylenol extra strength oranges and water and Gatorade my head hurts so much though. Any advice or help you can offer is most appreciated thank you.”
M中的任谁第一次参加Cherim的小组只是想更好地人民的了解他们遇到。 6月30日，一名新成员写道： “我今天刚刚检测到covid-19呈阳性。其他人是否一直持续头痛，这不会停止对任何服用建议。 我正在服用DayQuil和NyQuil，我有Tylenol额外强度的橘子和水，而Gatorade的头却疼得那么厉害。 非常感谢您提供的任何建议或帮助。”
Cherim says posts have become more urgent and graphic over the past few months. People who contracted the virus back in March wrote in to complain that symptoms were growing worse. Many feared they would die or worried they would never recover. Some suffered from depression; others complained of a loss of motivation or a feeling of anxiety about the future that never faded. Young people, old people, pregnant women, health care workers, and even people who had been isolated for weeks reported that they had tested positive.
Cherim说，在过去的几个月中，帖子变得更加紧急和生动。 早在三月份感染该病毒的人就写信抱怨症状越来越严重。 许多人担心自己会死或担心自己永远无法康复。 一些人患有抑郁症； 其他人则抱怨失去动力或对未来从未消逝的焦虑感。 年轻人，老人，孕妇，卫生保健工作者，甚至被隔离了几周的人都报告他们的测试呈阳性。
“If I read all these posts, I will hang myself.”
“如果我阅读所有这些文章，我会上吊自杀。”
Moderating the group was taxing. By May, all but one of the original seven moderators Cherim had tasked to help him manage the group had quit. They complained of burnout from reading all the accounts of people suffering and not getting better. The work took a toll on Cherim, too. He says he now just scans posts before approving them, trying not to process the content.
主持小组很费力。 到5月，最初的七位主持人Cherim曾负责帮助他管理该小组的所有人中的一位已经辞职。 他们抱怨阅读所有遭受苦难并没有好起来的人的倦怠。 这项工作也给Cherim造成了损失。 他说，他现在只是在批准之前扫描帖子，试图不处理内容。
“I have to process them differently. If I read all these posts, I will hang myself,” Cherim says. He leaves the daily operations of the site to a new group of moderators, all of whom have recovered from the virus themselves. A few hundred new members join every day. (“It’s not a congratulatory milestone,” Cherim says.)
“我必须以不同的方式处理它们。 如果我阅读了所有这些文章，我会上吊。” Cherim说。 他将站点的日常操作留给了新的一组主持人，所有主持人都已从病毒本身中恢复过来。 每天有数百名新成员加入。 (“这不是一个可喜的里程碑，” Cherim说。)
Questions posted by members illustrate what a long, uncharted road ahead Covid-19 is, even for those who have recovered. Some examples of recent queries: How do you tell your family and friends that you had the virus? Your boss? What if everyone you love is afraid to see you? When did you have your first drink after contracting the virus? Your first cigarette? Is it okay to have sex while recovering from the virus? Can you go outside and walk your dog? Recent evidence that suggests coronavirus antibodies fade made some worry about reinfection. Many who live in states without mask mandates and soaring rates of transmission fear going outside.
成员发布的问题说明，即使对于已经康复的人，Covid-19的未来路途还很漫长。 最近查询的一些示例：如何告诉家人和朋友您感染了病毒？ 你的老板？ 如果您所爱的每个人都不敢看到您怎么办？ 感染该病毒后，您什么时候第一次喝酒？ 你的第一支烟？ 从病毒中恢复过来做爱是否可以？ 你可以出去outside狗吗？ 最近的证据表明冠状病毒抗体会褪色，这使人们对重新感染产生了担忧。 许多住在没有面具规定和传播率飙升的州的人担心会外出。
For some group members, Facebook is their sole source of contact with others who live with the virus. Andra Bachan, a nursing student from Indiana, is a member of Coronavirus Survivors Group, Covid-19 Recovered-Survivors, and a few other Covid-19 Facebook support groups. She says that as a single mother of a 13-year-old girl, she joined the groups so she could find others who were raising children on their own while also fighting the virus. But instead, Bachan realized many people had a support network that she lacked. “Other people had spouses or family members who helped,” Bachan says. “But for me, [the virus] was a huge upheaval.”
F或某些组成员，Facebook是他们与其他人谁与病毒接触生活的唯一来源。 来自印第安纳州的护理专业学生安德拉·巴坎(Andra Bachan)是冠状病毒幸存者小组 ( Coronavirus Survivors Group) ， Covid-19 Recovered-Survivors和其他Covid-19 Facebook支持小组的成员。 她说，作为一个13岁女孩的单身母亲，她加入了这些团体，这样她就可以找到其他人，这些人既可以自己抚养孩子，又可以抵抗病毒。 但是相反，Bachan意识到许多人都缺乏她所拥有的支持网络。 “其他人有配偶或家庭成员的帮助，” Bachan说。 “但是对我来说，[病毒]是一场巨大的动荡。”
Linda Ots, a 53-year-old American physical therapist who lives in the Netherlands, says that other than her family and a “Covid buddy” who lives in the Hague, she knows no one else who has been infected with the virus. In the Netherlands, which still has a low number of cases, people with the virus can feel ostracized, she says. Finding the group, and finding more people with persistent symptoms, made Ots “feel less insane.”
居住在荷兰的53岁的美国理疗师琳达·奥茨(Linda Ots)说，除了她的家人和住在海牙的“ Covid伙伴”以外，她不认识感染该病毒的其他人。 她说，在荷兰的病例仍然很少，在这种情况下，患有这种病毒的人会感到被排斥。 找到小组，找到更多有持续症状的人，使奥茨人“精神错乱”。
The groups also provide solace to those in long recoveries. While early data by the WHO suggested that recovery time for the virus is anywhere from three to six weeks, many in the support groups report experiencing symptoms for far longer. Reddit threads and Slack groups have cropped up for such “Covid-19 long-haulers” as they navigate the virus for months.
这些团体还为长期康复者提供慰藉。 尽管世界卫生组织的早期数据表明该病毒的恢复时间为三到六周，但许多支持小组报告称其症状出现的时间更长。 Reddit线程和Slack组已经涌现了这种“ Covid-19长途旅行商”，因为他们已经使用了几个月的病毒。
As comforting as online support groups are for some, relying on them for serious health care advice can be risky. Group members post using their real names, and some disclose their personal medical histories and other health care data. Some members crowdsource medical advice, posting pictures of their pulse oximeter readings, mysterious rashes, or their “Covid toes.” In Covid-19 Support Group (Have It/Had It), a group with more than 16,000 members, there are many repeat occurrences of this.
与某些在线支持小组一样，要获得安慰，依靠他们提供认真的医疗保健建议可能会有风险。 小组成员使用他们的真实姓名发表帖子，一些成员公开其个人病史和其他医疗保健数据。 一些成员众筹医疗建议，张贴脉搏血氧仪读数，神秘皮疹或“ Covid脚趾 ”的照片 。 在Covid-19支持小组(Have It / Had It)中 ，该小组成员超过16,000，其中有很多重复出现。
One Covid-19-positive woman posted an image of her X-ray scan and asked the group for their insights. A mother posted an image of her 12-year-old daughter’s pulse oximeter reading, asking if the numbers are normal. Almost instantly, the comments come pouring in, most of them urging the mother to take the daughter to the emergency room. But the mother kept posting, at one point asking the group if they knew how to properly attach the device to her daughter’s finger.
一名Covid-19阳性妇女张贴了她的X射线扫描图像，并要求小组提供他们的见解。 一位母亲张贴了她12岁女儿的脉搏血氧仪读数的图像，询问数字是否正常。 几乎立即，评论开始涌入，其中大多数敦促母亲将女儿带到急诊室。 但是母亲一直在发贴，有一次询问小组是否知道如何正确地将设备固定在女儿的手指上。
Sara Lewis, one of the administrators of the group called Covid-19 Support Group (have it/had it) and a registered nurse, told OneZero in a Facebook message that she and other moderators who are “medical professionals” monitor all comments. Out of the four administrators and ten moderators of the 17,000 member group, two are nurses and one is a psychologist, a group administrator confirmed. Doctors and nurses, who can be held liable for doling out medical advice, normally don’t do so to non-patients.
名为Covid-19支持小组(拥有/拥有)的小组管理员之一萨拉·刘易斯(Sara Lewis)在Facebook消息中对OneZero表示，她和其他“医学专家”主持人监视所有评论。 小组管理员确认，在17,000个成员组的四名管理员和十名主持人中，两名是护士，一名是心理学家。 医生和护士可能会因向他们提供医疗建议而承担责任，通常不会对非患者这样做。
But the group does permit members to ask other members for their non-expert readings of things like X-ray scans or EKG readings. Vanessa Cruz, another administrator in the group, acknowledged that the group allows members to post medical records and solicit opinions from other members.
但该组织确实允许成员要求其他成员提供有关X射线扫描或EKG读数之类的非专家读数。 该小组的另一位管理员Vanessa Cruz承认该小组允许成员发布病历并征询其他成员的意见。
“Yes, we do allow it however, we ask that the person cover their personal information that may be on an X-ray or lab report,” Cruz told OneZero in a Facebook message. She added that the group advises members not to take any treatments or medications without consulting their doctor. But it’s not clear how many members follow this guidance.
“是的，但是我们确实允许这样做，我们要求该人掩盖其可能在X光片或实验室报告中显示的个人信息，”克鲁兹在Facebook消息中对OneZero说道。 她补充说，该小组建议会员在没有咨询医生的情况下不要服用任何治疗或药物。 但是尚不清楚有多少成员遵循此指南。
“People often trust those they perceive as peers just as much as doctors—a good thing when information is correct, but not such a good thing when information is misleading,” Matthew DeCamp, MD, PhD, an associate professor in the Center for Bioethics and Humanities at the University of Colorado, told OneZero.
“人们经常像对待同龄人一样相信他们，就像医生一样。在信息正确的情况下这是一件好事，而在信息产生误导时则不是一件好事，”生物伦理学中心副教授马修·德坎普科罗拉多大学的“人文科学”杂志告诉OneZero 。
“Why would anyone go on this site and type something that isn’t true?”
“为什么有人会在这个网站上输入不正确的内容？”
Cheryl Hickey, a 55-year-old from Phoenix who tested positive for Covid-19, says she trusts information from her support group more than she trusts the news. She and her husband received their positive test results from a drive-through testing center. Wary of a staggering bill, Hickey says she has avoided consulting with a doctor or entering an emergency room.
来自凤凰城的现年55岁的谢丽尔·希基(Cheryl Hickey)对Covid-19的测试结果为阳性，她说，她对自己支持小组提供的信息的信任远胜于对新闻的信任。 她和她的丈夫从一家直通车测试中心收到了积极的测试结果。 Hickey警惕巨额账单，她避免与医生商量或进入急诊室。
Instead, Hickey’s sole source of information on Covid-19 is her Facebook group. “Why would anyone go on this site and type something that isn’t true?” Hickey asks.
相反，Hickey关于Covid-19的唯一信息来源是她的Facebook小组。 “为什么有人会在这个网站上输入不正确的内容？” 希基问。
Hickey says she finds reading real-life anecdotes from people all over the country who are living with the virus more useful than the impersonal, data-driven death tolls and hospitalization rates she feels the media has become overly preoccupied with. “More than anything, [the Facebook groups] show you that this virus affects people very differently, which is very frustrating,” she says.
希基说，她发现从全国各地感染病毒的人那里读取现实生活的轶事，比以媒体为中心的非个人化，数据驱动的死亡人数和住院率更为有用。 她说：“最重要的是，[Facebook团体]向您展示了这种病毒对人们的影响非常不同，这非常令人沮丧。”
Members of a few different support groups say that Covid-19 opportunists frequently pop up in many discussions, posting links to snake-oil cures, unproven treatments, or conspiracy theories — and that lately they’ve noticed an uptick of such misinformation. Even if the moderators of certain groups are quick to block such comments, they still occur at a rapid pace. In other groups, this type of moderation doesn’t appear to happen at all.
几个不同的支持小组的成员说，Covid-19机会主义者经常在许多讨论中弹出，张贴与蛇油疗法，未经证实的治疗方法或阴谋论相关的链接-最近，他们注意到此类错误信息有所增加。 即使某些小组的主持人很快阻止了此类评论，但它们仍在快速发展。 在其他小组中，这种节制似乎根本没有发生。
Virtually anyone can join a support group for recovering Covid-19 patients. While most groups have screening questions, none ask for any proof, such as a copy of test results. That made joining a Facebook group for Covid-19 survivors a mixed bag for Shoshana, a 30-year-old from Massachusetts who asked that her name be withheld for safety reasons. News of her diagnosis had spread quickly in her tight-knit community, and after a local right-wing blogger mocked her social media posts, his supporters began harassing her online.
V irtually任何人都可以加入一个支持小组Covid，19例患者恢复。 虽然大多数小组都有筛查问题，但没有人要求提供任何证据，例如测试结果的副本。 这使加入Covid-19幸存者的Facebook团体成为了Shoshana的一个混合包，她来自马萨诸塞州，现年30岁，出于安全原因要求隐瞒她的名字。 有关她的诊断的消息很快在她紧密的社区中传播，当地的右翼博客嘲笑了她的社交媒体帖子后，他的支持者开始在网上骚扰她。
On Facebook, comments from group members who doubted the severity of the virus and claimed to be registered nurses struck Shoshana as dubious. “Some of these groups,” she says, “when the wrong people get in, it kind of perpetuates the agenda that it’s kind of a hoax.”
在Facebook上，来自小组成员的评论怀疑该病毒的严重性，并声称是注册护士，这使Shoshana感到可疑。 她说：“其中一些团体，当错误的人进入时，就好像是在骗人的议程一样。”
Not all bad information on private groups escapes Facebook’s attention. The platform uses reports from users, independent fact-checkers, and A.I. to flag posts in private groups that violate its community standards, reported the Washington Post. This has not been a perfect process, and misinformation still goes unnoticed.
并非所有关于私人团体的不良信息都会引起Facebook的注意。 据《 华盛顿邮报》报道，该平台使用来自用户，独立事实检查人员和AI的报告来标记违反其社区标准的私人团体的帖子 。 这不是一个完美的过程，并且错误信息仍然没有被注意到。
Since the pandemic, Facebook has revised its community standards to address conspiracy theories involving the pandemic. The platform also explicitly bans false information about prospective cures or preventions for Covid-19, including “existing vaccines, dietary practices, aromatherapy, and essential oils.”
自大流行以来，Facebook修订了其社区标准，以解决涉及大流行的阴谋论。 该平台还明确禁止有关Covid-19的预期疗法或预防的虚假信息，包括“现有疫苗，饮食习惯，芳香疗法和精油”。
John Kallenbach, who runs the Coronavirus Survivors Group — Covid 19 group, told OneZero that he was given an administrator’s violation from Facebook for posting wrong information. The platform’s third-party fact-checkers have also flagged his group’s posts for containing false statements. If Kallenbach violates community standards again, Facebook has informed him that the platform may take down his group completely.
冠状病毒幸存者小组(Covid 19小组)的负责人约翰·卡伦巴赫(John Kallenbach)告诉OneZero ，他因发布错误信息而受到Facebook管理员的侵犯。 该平台的第三方事实检查人员还标记了其小组的帖子中包含虚假陈述。 如果Kallenbach再次违反社区标准，Facebook已通知他该平台可能会完全摧毁他的团队。
In a post on June 7, Kallenbach posted a list of several supplements and foods that he claimed were natural cures for the virus. “Making a list of natural products that have helped people recover — possibly recover quicker… and possibly avoid the virus altogether. I am not a Dr — these products may help your or they may not,” he wrote.
在帖子 6月7日，Kallenbach发帖称，他声称是该病毒的自然疗法的一些补充剂和食品的清单。 “列出有助于人们康复的天然产品清单-可能更快地恢复……并可能完全避免这种病毒。 我不是医生-这些产品可能对您有帮助，也可能无济于事，”他写道。
Among the ingredients listed in Kallenbach’s post include colloidal silver, a supplement that scientists say has not been proven to prevent or treat Covid-19 and has even been shown to cause serious side effects.
Kallenbach的职务中列出的成分包括胶体银 ，科学家称这种补充剂尚未被证明能预防或治疗Covid-19，甚至被证明会引起严重的副作用。
“[Facebook] should leave us alone and let us regulate our own groups. Censorship about helpful remedies is similar to Prohibition. Essential oils are not harmful. Neither is telling people to take more Vitamin C and get more sun,” Kallenbach wrote in a message to OneZero.
“ [Facebook]应该让我们独自一人，让我们规范自己的团体。 有关有用补救措施的审查与禁止类似。 香精油无害。 两者都没有告诉人们摄取更多的维生素C和获得更多的阳光，”卡伦巴赫在写给OneZero的一封邮件中写道。
Covid-19 recovery groups that have avoided becoming magnets for misinformation have done so thanks to extra-scrupulous moderators. April Lopez, a nurse practitioner who runs the RGV Covid-19 Recovery Group, says she monitors the group at all hours for fake cures and misinformation.
多亏了谨慎的主持人， C -19的19个恢复小组避免了被误导所吸引。 RGV Covid-19康复小组的负责人，护士执业医师April Lopez说，她全天候监视该小组的假药和错误信息。
Lopez, who has lived in Texas’ Rio Grande Valley her entire life, is now a frontline health care worker while the region faces a surge in cases and many hospitals are at capacity. With more than 28,000 members, her Facebook group is tailored for those in the Rio Grande Valley community and is one of the largest coronavirus support groups on Facebook. Lopez posts explanatory videos on the virus in Spanish.
洛佩兹(Lopez)一生都住在德克萨斯州的里奥格兰德河谷(Rio Grande Valley)，现在是前线医疗保健工作者，而该地区面临着大量病例，许多医院都已满员 。 她的Facebook小组拥有28,000多名成员，是为Rio Grande Valley社区的人们量身定制的，并且是Facebook上最大的冠状病毒支持小组之一。 洛佩兹用西班牙语发布了有关该病毒的说明性视频。
She strictly bans any medical advice from the group. “If someone wants to get medical advice, they need to seek health care. It’s for the protection of the community,” Lopez says.
她严格禁止该小组的任何医疗建议。 “如果有人想获得医疗建议，他们需要寻求医疗保健。 这是为了保护社区。”洛佩兹说。
Many residents of the region are uninsured. According to Lopez, some have even crossed the border to Mexico in the hope of finding cheap drugs and treatment. She says some locals have died from ingesting fake or off-label treatments for Covid-19.
该地区许多居民没有保险。 根据洛佩兹的说法，有些人甚至越境前往墨西哥，希望找到便宜的药物和治疗方法。 她说，一些当地人因摄入伪造或标签外的Covid-19治疗而死亡。
Lopez warns group members not to cross the border for treatments. She asks them to come to the clinic.
洛佩兹警告团体成员不要越境接受治疗。 她请他们来诊所。
As for a cure to the rise of misinformation, Lopez says she doesn’t have one.
至于解决误传的方法，洛佩兹说她没有。
“There’s no way to prevent people from believing in myths,” she says. “All we can do is get the word out and help people in any way we can.”
她说：“没有办法阻止人们相信神话。” “我们所能做的就是发扬光大，并尽我们所能帮助人们。”
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