运动也有“危害”？如果患有慢性疲劳综合征，请停止运动
Exercise Actually Makes Chronic Fatigue Syndrome Worse
译文简介
如果你感到极度疲乏，身体非常不适，运动后情况还要加剧，那么就要小心慢性疲劳综合征了，也许你需要的是充足的休息而不是继续坚持运动。。
正文翻译
慢性疲劳综合征（ME/CFS）作为一种复杂的神经系统疾病，长期以来因其症状的隐蔽性与多样性被低估或误诊。与日常疲劳不同，患者的核心特征在于极度疲乏无法通过休息缓解，且身体或脑力活动后可能出现症状恶化，这种现象被称为“运动后不适”（PEM）。例如，简单的家务或社交活动可能导致患者后续数日陷入类似流感的虚弱状态，甚至长期卧床。研究显示，全球约1500万至3000万人受此病困扰，但高达90%的病例未被确诊，部分原因在于其症状与其他慢性疾病（如抑郁症、纤维肌痛）存在重叠，且诊断需满足至少六个月的特定症状组合，包括直立性低血压、认知障碍等。
近年来的医学观察发现，ME/CFS与病毒感染存在显著关联。例如，EB病毒（引发单核细胞增多症）和新冠病毒均可能成为诱因。新冠大流行后，“长期新冠”患者中约半数符合ME/CFS诊断标准，两者在脑血流减少、免疫异常等机制上的相似性引发了学界关注。尽管病理机制尚未完全明确，但研究表明，病毒感染可能通过激活特定基因，导致免疫与神经系统功能紊乱，进而引发慢性炎症反应。这一发现为开发靶向治疗提供了潜在方向。
历史上，医学界对ME/CFS的认知曾陷入误区。以“PACE试验”为例，该研究主张通过渐进式运动改善患者体能，却因定义“康复”标准宽松、忽视患者实际恶化情况而饱受争议。此类错误疗法不仅加剧患者痛苦，更暴露了科研与临床需求脱节的问题。当前，患者管理转向以个体能量调控为核心，例如通过记录每日活动量识别自身极限，避免触发PEM；或在重要事件前储备体力，以减轻症状波动。药物干预虽无特效方案，但镇痛剂或助眠药物可部分缓解伴随症状。
ME/CFS的研究困境凸显了患者参与的重要性。过去，许多结论因脱离患者真实体验而缺乏实用性，例如忽视PEM的延迟性（症状常在活动后24小时显现），导致患者难以追溯诱因。未来，科学探索需更注重患者反馈，同时深化对免疫-神经交互机制的解析。随着“长期新冠”患者群体扩大，ME/CFS的公共卫生意义日益凸显，唯有通过跨学科合作与人文关怀，才能为这一沉默的群体找到真正的出路。
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As someone with ME (along with multiple other disabilities), this is the first time I have EVER seen a group this far reaching and respected discuss this absolutely debilitating disorder. Thank you for both raising awareness and treating us seriously.
Edit: hey, thank you for bringing up Long Covid as well. The amount of times ive been scoffed at for lixing my covid infections with the advancement of my disabilities is staggering. Thank you so much for taking us seriously.
作为一名同时患有ME和其他多种残疾的人，这是我第一次看到如此有影响力且受尊敬的群体讨论这种令人衰竭的疾病。感谢你们既提高了公众认知，又认真对待我们的处境。另外，感谢提到新冠！我因为将新冠感染与自身残疾恶化联系起来而遭受嘲笑的次数多到离谱，真的非常感谢你们愿意正视我们的困境。
I was ultra fit before I got sick. I was a gym manager, PT, climbed mountains (old videos still on my channel ), loved body building, cycling… I lived to be active. I fought with every ounce of my being to keep going when I first got sick. This ensured I became permanently worse and worse. Almost 8 years later, I am 100% housebound, horizontal, use a wheelchair when I rarely go outside (to medical appointments only). I’ve lost my entire life. And people STILL think we’re just not trying hard enough…. Apparently we just can’t be bothered to get better…..
生病前我曾是健身狂人，担任健身房经理、私人教练，登山（频道的旧视频还在）、撸铁、骑行样样精通，我活着就是为了保持活跃。刚患病时我拼了命想继续生活，结果却导致病情不可逆地恶化。近8年后的现在，我完全被困在家中卧床不起，偶尔出门（仅限就医）必须坐轮椅。我失去了整个人生，但人们依然觉得我们"不够努力"，仿佛我们只是懒得康复。
The fact that you covered the fraudulent PACE trial is honestly everything. Such a defining moment in the continued harm of MECFS patients over the decades. Really appreciate you covering this debilitating neuroimmune illness.
你们揭露了PACE试验的学术欺诈，这比什么都重要。这个事件是几十年来ME/CFS患者持续遭受伤害的转折点，非常感谢你们报道这种毁灭性的神经免疫疾病。
My wife has been suffering from ME/CFS since Covid. She can't work any more, sleeps at least half the day, and becomes completely drained after doing simple tasks. To top it off the government denied disability.
我妻子因新冠患上ME/CFS后无法工作，每天至少睡半天，做点简单事就精疲力尽。更讽刺的是，政府竟然驳回了她的残疾认定申请。
原创翻译：龙腾网 https://www.ltaaa.cn 转载请注明出处
One thing worth highlighting is that a PEM crash can permanently lower your baseline. For example, maybe you can manage a walk around the block once a week, but one day you over-extend and crash, and now the maximum you can manage is getting from the bedroom to the kitchen, and any more than that is enough to trigger the next crash.
Edit: I'm not a doctor and can't advise anyone to do anything other than read up-to-date research and see someone who is a doctor.
必须强调的是，劳累后不适（PEM）发作可能永久降低身体机能基线。比如原本每周能勉强绕街区散步一次，某天过度活动导致崩溃后，可能连卧室到厨房的距离都成为极限，稍越界就会引发下次崩溃。（声明：非医学建议，请查阅最新研究并咨询专业医师）
17 years diagnosed... gnarly... used to go climbing, hill walking, swimming... when i go out now it's in an electric wheelchair
确诊17年...曾经登山、徒步、游泳样样在行...如今出门全靠电动轮椅代步。
THANK YOU. We suffer not just from our illness, but from the ignorance of millions. Often our own doctors.
感谢！我们不仅要承受病痛，还要面对无数人的无知——很多时候包括自己的主治医生。
原创翻译：龙腾网 https://www.ltaaa.cn 转载请注明出处
The horrible thing is that, at least in my country, rehabilitation clinics will actively push people with ME/CFS to do exercise that hurts them, and if you refuse to go to the clinic in the first place, the government might not pay you any more social services if you're unable to work.
Edit: YouTube won't let me reply to any comments, but I live in Germany.
可怕的是，至少在我国（德国），康复诊所会强迫ME/CFS患者进行有害的运动治疗。更糟的是，如果你拒绝接受这种治疗，政府可能会停发失业者的社会福利金。
I would have thought we'd learned from Polio that "just work harder" is not a great answer when someone is losing capacity.
But then I remembered us. We don't learn from anything.
我以为经历过小儿麻痹症后，人类早该明白对机能衰退者说"再加把劲"是荒谬的。但转念想到现实——人类从历史中学到的唯一教训，就是从不吸取任何教训。
I'm in tears. I've been telling my doctor for over a decade now that exercise makes it worse. Ialways got brushed off with "Oh, your just not used to exercising anymore", or "You just need to do more exercise, then you'll start seeing the benefits." Nice to know I'm not insane, just in agony with doctors that don't listen. And I usually call it something like "public hangover" because it usually happens after I go out running errands or otherwise dealing with the public, lol.
我哭了。十多年来我一直告诉医生运动会加重病情，得到的总是"你只是不习惯运动了"或"多练就能见效"。现在终于知道自己没疯，只是遇到了充耳不闻的医生。顺便说，我把发作期戏称为"社交宿醉"，因为往往在出门办事或社交后出现（苦笑）。
I have CFS and it's absolutely infuriating to explain to people, especially employers. It's incredibly hard to get disability payment for CFS, so I'm forced to work, and it took me 8 months to get my last job because absolutely nobody believes you.
向人解释CFS（尤其面对雇主）简直令人抓狂。申请残疾津贴难如登天，我只能被迫工作，而找上份工作花了八个月——因为根本没人相信这种病存在。
I used to be a gym rat and do open water swimming before I got this. The level of exhaustion is not comparable: one feels like pain, CFS feels like you’re trying to puppet your own body around, while you have the flu and or are hungover. If you feel this way, don’t let doctors who are ignorant tell you you’re depressed or anxious. Find a community and a specialist.
Thank you Scishow!
患病前我是健身狂+公开水域游泳爱好者。普通疲惫是疼痛，而CFS是像操纵提线木偶般控制身体，同时经历流感+宿醉的叠加态。如果你有类似感受，别让无知医生说成"抑郁焦虑"，去找病友群和专科医生吧。感谢SciShow！
Turns out you can't gain spoons by spending spoons.
事实证明，"用掉能量勺"并不会"赚到更多能量勺"。（注：能量勺理论是慢性病患者用来比喻有限精力的经典表述）
原创翻译：龙腾网 https://www.ltaaa.cn 转载请注明出处
The fact that I was "exercise responsive" - meaning exercise alleviated my pain symptoms - was one of the ways my doctor and I determined it wasn't CFS. Turns out it was hEDS! So about 5 years ago I started lifting, and now I can dead lift my body weight and leg press over 500 lbs.
But for years, those with CFS have known that exercise just made everything hurt more. Hopefully we find an effective treatment one day.
我属于"运动缓解疼痛"的特殊体质，这帮助医生排除了CFS（实际确诊hEDS遗传性结缔组织病）。五年前开始力量训练，现在能硬拉自重、腿举500磅。但多年来CFS患者都清楚运动会加剧痛苦，希望未来能找到有效疗法。
This syndrome is absolutely terrifying to me. I just read an article about the health system refusing to treat a young woman because it was a "mystery" disease, heartbreaking
这种综合征让我毛骨悚然。刚读到医疗系统因"病因不明"拒诊年轻女性的报道，太令人心碎了。
just seeing the title "exercise makes chronic fatigue worse": Yeahhhh... I could've told you that. Anyone with this disorder could've told you that (having chronic fatigue due to other issues myself). If only people actually listened to us when we say something isn't helping... It's almost like when you live with something your whole life you know what it feels like when things help and don't help But no, every doctor I've ever had just says to walk more!
单看标题"运动加剧慢性疲劳"就想说：哈！这事我们患者早八百年就知道了（本人因其他疾病有慢性疲劳）。但凡有人愿意听我们说不该做什么...毕竟朝夕相处最懂自身状况对吧？然而现实是，每个医生只会重复"多走路"的建议。
As an ME/CFS patient, now doctor, thank you from the bottom of my heart for bringing more awareness to this condition. ME patients deserve so much better than how they have been treated for the past 50 years. Science and medicine have let them down. I’m so blessed to now be practicing medicine in this niche. There is so much interesting science to learn and amazingly beautiful people to help.
Sending love to all living withME/CFS
身为ME/CFS患者兼现任医生，衷心感谢你们提高社会认知。过去50年对ME患者的待遇配不上他们应得的尊严，科学和医学都辜负了他们。如今能在这个领域行医是我的荣幸，这里既有值得探索的科学奥秘，又有值得帮助的美好人群。向所有ME/CFS病友传递爱意。
“When exercises makes you feel like you have the flu” is a great way to explain what PEM feels like. Horrible body aches from head to toe, feeling bone deep crushing fatigue, so weak just getting up off the couch is hard and awful, feeling so out of it mentally it’s hard to even focus on watching TV let alone think enough for daily decisions, and just feeling incredibly miserable (malaise). Some can even get a sore throat with it.
This video was well done. There is a very long history of ME/CFS being ignored and minimized, so thank you for doing your due diligence, and also bringing up things like the bunk GET study. The ME/CFS community appreciates actual factual awareness
"运动后像得流感"精准描述了PEM感受：全身剧痛、骨髓深处的疲惫、虚弱到起身都困难、大脑混沌到无法追剧更别说做决定，外加难以名状的痛苦（不适感）。有些人甚至伴随咽喉痛。视频做得很棒，ME/CFS长期被忽视淡化，感谢你们认真调研并提及无效的渐进运动疗法（GET）研究，病友群体需要这种基于事实的认知。
原创翻译：龙腾网 https://www.ltaaa.cn 转载请注明出处
This needs to be spread widely by reputable sources, because it feels like people (including many in the medical profession) aren't listening to us. Thanks, SciShow, for contributing to that process.
这类内容需要权威渠道广泛传播，因为大众（包括很多医疗从业者）似乎听不进我们的声音。感谢SciShow为此做出的贡献。
I have ME/CFS and it's ruined my life. This condition is misunderstood by many doctors who gaslight patients and tell them it's to exercise, which can cause permanent damage. Thank you for helping spread awareness
ME/CFS毁了我的人生。太多医生误解这种病，用"多运动"的说辞对患者进行心理操纵，导致永久性伤害。感谢你们帮忙传播真相。
As someone with CFS who's been trying to explain this to people for TWENTY YEARS I'm not going to say what I want to say because there might be children in the comments section who don't need to see a wall of cuss words.
作为向人解释CFS二十年的患者，此刻有千言万语想说，但考虑到评论区可能有未成年人，就不破口大骂了。
Being told you're just not trying hard enough to get better and that you need to exercise when you can barely get out of bed is a heartbreaking experience. It's amazing to see videos like this where it's all laid out in such a great informative way
当虚弱到难以下床时，却被指责"不够努力康复"和"需要多运动"，这种经历令人心碎。看到这类信息详实的视频真是太好了。
Mostly bedbound at 27 from ME/cfs from a COVID infection. Had to drop out of a mechanical engineering degree; now dependent on my parents. Thank you for covering this! So important.
27岁因新冠诱发ME/CFS而卧床不起，被迫中断机械工程学位，现在靠父母照顾。感谢报道，这事太重要了。
原创翻译：龙腾网 https://www.ltaaa.cn 转载请注明出处
WOW! I never hear anyone ACTUALLY talk about this seriously. It’s always in passing or wrong. I’ve had it for over a decade and people still don’t get it when I explain it. Thank you.
天！我从没听过有人认真讨论这个病，要么轻描淡写要么错误百出。患病超十年，至今解释病情时仍无人理解。谢谢你们。
The most exhausting part of the whole disease is how little people and medical professionals understand and is willing to understand that all I need is rest and nothing else.
这病最折磨人的，是连医疗从业者都不愿理解"患者只需要休息"这个简单事实。
It’s so hard to explain to people that my partner isn’t just tired, he’s sick. Thank you for covering this.
很难让人明白我伴侣不是"犯懒"，而是真的病了。感谢报道。
I'm glad to hear you say that ME/CFS is a neurological disease. Now convince my neurologist, who called me a fool when I told him that and asked for help.
很高兴你们说ME/CFS是神经疾病，现在请去说服我的神经科医生——当我这么说并求助时，他骂我是傻子。
I became chronically ill about 20 years ago and at that time I remember researching what it could be and finding out about CFS/ME - it turned out that's not what I have (I don't have the hallmark symptom) but I vividly remember reading the horror stories from people who were made much much sicker by doctors insisting on treating the condition with exercise, and then the doctors being angry at them for it not working and blaming them or calling them hypochondriacs who "just wanted to be sick" - it's really shocking in a good way to hear scishow say what people with the condition have always been saying. People with this condition deserve so much better.
约20年前我开始长期患病，当时研究病因时了解到CFS/ME（后来排除因无典型症状），但清楚记得那些恐怖故事：医生强迫患者运动导致恶化，治疗无效后反而责怪患者"装病求关注"。如今听到SciShow说出患者心声，这种震撼是积极的，这类患者理应得到更好的对待。
38, Long Covid, ME/CFS, Fibro, POTS, EDS, and more.
ME/CFS, etc, has basically ruined my life.
I had a career, a house, a life. I walked everywhere.
I'm now living back with my parents, often bed bound, almost always housebound.
I now have a wheelchair to help me get around.
One of the worst things about it all is insomnia being a major symptom. Exhausted all the time, and my body won't even let me sleep.
38岁，长新冠+ME/CFS+纤维肌痛+体位性心动过速综合征+埃勒斯-当洛综合征等。ME/CFS彻底毁了我的人生：原有事业、房产、生活全没了，曾经能步行去任何地方，现在搬回父母家，常卧床几乎不出门，靠轮椅代步。最糟的是严重失眠——时刻精疲力尽，身体却拒绝入睡。
My mom was debilitated by this disease. Thank you for calling attention to it.
我母亲被这病折磨得不成人形，感谢你们唤起人们的关注。
原创翻译：龙腾网 https://www.ltaaa.cn 转载请注明出处
I need to send this video to every single doctor I have had in my life save for my current primary care doctor. I especially need to send this video to my previous therapist, who's ONLY advice was "yoga and daily affirmations."
我要把这视频转发给所有前任医生（现主治除外），特别是那位只会说"练瑜伽+每日心理暗示"的前心理治疗师。
Had it 20 years now. And my god the gas lighting and prejudice I’ve been exposed to.
患病二十年，天知道我经历了多少心理操纵和偏见。
My doctors pushed me so hard, not knowing what was wrong, that I'm a mostly bedbound wheelchair user now.
医生在不明病因的情况下过度治疗，导致我现在基本卧床靠轮椅生活。
THANK YOU - I have had this for 4.5 yrs since Covid. Shattered my life. We desperately need funding and research.
感谢！新冠后患病四年半，人生支离破碎。我们急需研究资金。
Thank you for this episode!! I would love to see other conditions that aren't well known to the public like Ehler-Danlos and POTS!
感谢这期节目！希望能报道其他冷门疾病，如埃勒斯-当洛综合征和体位性心动过速综合征。
Thanks for raising attention on this. I'm 3 days into a crash (bedbound, exercise hasn't been on the cards for years) and more people need to understand this condition
感谢关注！此刻是我崩溃期的第三天（已卧床，多年无法运动），需要更多人理解这种病。
I was diagnosed in 1991 with CFS after a near-fatal EBV infection. Although I was lucky enough to be diagnosed by the top virologist at the children’s hospital, nobody knew how to treat it. For most of my life, I got the “well you’re not getting better because you’re not exercising more”, despite my assertions that exercise just made things worse! It took Covid for people to actually take CFS seriously, and not just an “excuse for being lazy”.
1991年因致命性EB病毒感染确诊CFS，虽幸运得到顶级病毒学家诊断，但无人知晓疗法。大半辈子都在听"好不了是因为运动不够"，尽管我强调运动会恶化！直到新冠出现，人们才正视CFS不是"懒人借口"。
THANK YOU FOR COVERING THIS. This disease scares the hell outta me, and so much of this is because literally no one knows or takes this seriously. Thank you so much for making an easily digestible video I can send to people. Thank you. Also, just to note, TRIGGERING PEM CAN PERMANENTLY LOWER YOUR BASELINE.
感谢报道！这病让我恐惧至极，主因是无人知晓或重视。感谢制作这支便于转发的科普视频，另外强调：触发PEM可能永久降低身体机能基线！
I have what my doc has labeled as "Post-Covid cronic fatigue" and I recently met a girl that is just like me, that has got diagnosed with ME/CFS, and I think this is what I have. I tried so hard to keep active and keep walking... and every time I end up worst than before. Five years of my life have been stolen. I’m in the worst shape I've ever been in and sometimes I feel hopeless.
I always feel more hopeful every time you all talk about things like this and long-covid. Thank you so much for talking about this.
医生诊断我为"新冠后慢性疲劳"，最近遇到确诊ME/CFS的相似病友后，我意识到自己可能也是。我曾拼命保持活跃坚持行走...结果每次都更糟。五年人生被偷走，如今身体状态史上最差，时而感到绝望。但每次看到你们讨论长新冠等相关话题，总能重燃希望，真的非常感谢。
Thank you for raising awareness. ME/CFS is a devastating illness.
感谢提高认知，ME/CFS是毁灭性的疾病。
原创翻译：龙腾网 https://www.ltaaa.cn 转载请注明出处
As someone who just started their fourth year as bed-bound due to gradual training I could not be happier for a video that actually explains what ME is. It is awful to be basically t0rtured by doctors and to be told your pain isn’t real and that the exaction will stop when you feel like you can’t even breath or move.
It is awful to be scared to ask for help because the doctors could be dangerous.
I was terrified when I got the notification for this video as I know there is A LOT of misinformation out there from sources that are supposed to be reputable and I could not be more grateful for real information from a source that reaches many people. Now I have another video to point people to if I need to explain my disability!
卧床第四年刚开始的我，看到真正解释ME的视频欣喜若狂。曾被医生用"疼痛是你的幻觉"和"坚持运动就能好"的说辞折磨，明明连呼吸移动都困难。更可怕的是因医生可能带来伤害而不敢再求医了。收到视频推送时很紧张——太多权威渠道传播错误信息——但结果充满感激，现在又多一个能用来解释病情的视频了！
Amazing that people can tell doctors this for YEARS and get gaslit or labelled a problem patient.
难以置信：患者向医生陈述病情多年，反遭心理操纵或贴上"麻烦病人"标签。
It took 8 years and 37 different doctors to get my diagnosis. Basically most doctors would do a few blood tests and tell me it was all in my head. I figured out what I had and found one of the best doctors studying it and was diagnosed. What really upsets me is that our Canadian government doesn’t even give us a tax break as we don’t qualify as disabled.
耗时8年、面诊37位医生才确诊。多数医生随便验血就说"心理问题"，最后自己查资料找到该领域顶尖医生才确诊，最愤怒的是加拿大政府不给我们税务减免，因为我们"不算残疾人"。
Thank you so much for covering this (and covering it so well)! Especially including the awful Pace Trial, which has caused so much lasting damage and misinformation. I've had M.E for 21 years and it's gradually gotten worse and worse. The NHS have left me, and so many other sufferers, to rot. As horrible as Covid was, I really hope it will help improve understanding and funding for post viral illnesses. I may never see a cure in my lifetime but I have hope for a treatment of some kind
感谢详尽报道，特别是揭露造成长期伤害的PACE试验！患病21年病情持续恶化，NHS任由我和其他患者自生自灭。尽管新冠可怕，但希望它能促进对病毒感染后遗症的理解和资金投入。或许此生等不到治愈，但相信会出现某种疗法。
I've had to change primary care doctors several times in the last few years because it feels like they never took my chronic fatigue seriously. They never did any tests beyond a standard blood panel, and typically advocated that I should exercise, even though I had anecdotal evidence where my endurance only declined after walking home for two years from my workplace.
Seeing this video pop up in my recommended makes me feel vindicated with that anecdotal evidence.
近几年多次更换家庭医生，因为他们从不认真对待我的慢性疲劳，只做基础验血就建议"多运动"，尽管我有通勤步行两年后耐力反而下降的实证。看到推荐栏出现这视频，感觉自己的经历终于被正名。
And, as usually, the doctors ignored ME/CFS patients (the majority women) who were telling them this for DECADES, because some guy who didn't have the condition but did have a bunch of letters after his name had a personal suspicion and belief in the the fundamental laziness of humans.
THE PEOPLE LIVING WITH THE CONDITION ARE THE EXPERTS!
和往常一样，医生们几十年来一直忽视肌痛性脑脊髓炎/慢性疲劳综合征患者（其中大部分是女性）的呼声，就因为某个没患过这种病、但名字后面挂着一堆头衔的家伙，基于个人偏见坚信人类本质是懒惰的。
真正了解这种疾病的专家，是那些亲身经历的患者啊！
原创翻译：龙腾网 https://www.ltaaa.cn 转载请注明出处
Covid was a mass-disabling event and left so many people alive but worse off, to say nothing of the death toll.
Thank you for talking about this. I don't have CFS, but I know people who do, and this sort of information will enable me and others to be more compassionate.
新冠疫情造成了大规模致残事件，让无数幸存者陷入更糟糕的境地，这还不包括死亡人数。
感谢你们讨论这个话题。我虽未患慢性疲劳综合征，但认识的患者让我明白，这类科普能帮助大家培养更多同理心。
I have ME/CFS and several related autonomic issues. I contracted it in college and it went undiagnosed for about 12 years. The total ignorance of its existence and of how it works caused me immense suffering because I simply don't have the same abilities as other people and everyone just assumed I was lazy.
As someone who has lived this as well as an experienced teacher...laziness doesn't really exist. If people don't meet your expectations, there is a reason and it isn't that they just want to be lazy.
People don't want to go through their lives like zombies with no investment in what they're doing. It's usually a last resort when they simply can't afford to be more present.
我患有肌痛性脑脊髓炎及多种相关自主神经失调问题。大学期间感染后，历经约12年才确诊。由于社会对这种疾病的认知空白，我承受了巨大痛苦——当我的能力无法与常人相比时，所有人都认定我是懒惰。
作为亲历者和资深教师，我认为懒惰本质上不存在。当人们达不到你的期待时，背后必有原因，绝非单纯想偷懒。没人愿意像行尸走肉般活着，这种状态往往是实在无法保持清醒时的最后选择。
As someone who had an awful case of "Long COVID", it's extremely frustrating how little discussion there is on the subject.
Thankfully, my fatigue and mental fog seems to have mostly subsided after a couple of years, but I know of people who have seen no improvement at all, some of whom have been diagnosed with ME. Every time someone says COVID is "no worse than the flu" it makes me want to rip my hair out.
作为"长期新冠"重症患者，相关讨论如此匮乏实在令人沮丧。值得庆幸的是，经过两年我的疲劳和脑雾已基本消退，但认识的患者中有人毫无改善，部分确诊了肌痛性脑脊髓炎。每次听到有人说新冠"不过就是流感"，我都气得想扯自己头发。
原创翻译：龙腾网 https://www.ltaaa.cn 转载请注明出处
This makes me so angry. A friend of mine developed this after covid and they were trying to figure out how to deal with it, find out what is even going on etc. They went on a 4-week special "rehabilitation" program for long-covid-patients where they did a bunch of phasical therapy and exercise to "help" build up stamina and exercise tolerance. My friend says they never felt worse than in the MONTHS after that "health retreat" (organised and greenlit by government health departments and bodies of the medical system btw, not some random guy advertising a "retreat"). It took them over a year of recovering and learning to care for themselves, staying home constantly, giving up all exercise which they used to love, just to get back to their energy and pain levels from before going into the program.
I cannot believe how bad the design of that study is that allowed this to happen to so many people. I want someone sued into oblivion over this. I want the people responsible to live every day with the same synptoms they have caused and worsened.
这让我怒火中烧。我朋友新冠后患上此病，当时正努力寻找应对方法。他们参加了政府卫生部门批准的、为期四周的"长期新冠康复计划"，进行所谓增强耐力的阶段疗法和锻炼。结果疗程结束后数月，朋友状态跌至谷底（注意这可是正规医疗项目，不是江湖骗子搞的）。他们花了一年多时间在家静养、放弃热爱的运动、学习自我护理，才勉强恢复到入院前的精力与疼痛水平。
真不敢相信这种害人研究方案能通过审核，导致众多患者受害。真该把责任人告到倾家荡产，让他们亲身体验自己加剧的病痛。
Thank you so much for covering this. I got sick with ME aged 30, I used to be a runner, had a good job, went to lots of gigs and festivals. Now almost five years housebound and mostly bedbound due to severe ME, unable to work or even wash my own hair. I used to be able to run 10k and now I can't walk much more than 10 meters. It's such a debilitating disease. I became severe because I tried to keep exercising, before I knew I had ME.
Covering the scandal of the PACE trial is very significant too!
万分感谢制作这期内容。我30岁患上肌痛性脑脊髓炎，曾经是跑者、有体面工作、常参加音乐节。如今因重症被禁锢家中近五年，多数时间卧床，无法工作甚至自己洗头。从前能跑十公里，现在走十米都困难。这种病摧毁力太强了——我的病情恶化正是因为确诊前强行坚持锻炼。
揭露PACE临床试验丑闻也意义重大！
Best ME explainer I've seen for a long time. I'd add, though, that PEM isn't a symptom as such, but the defining characteristic of ME, involving a substantial worsening of some or all symptoms and the addition of others.
Sometimes PEM doesn't resolve, and becomes the person's new baseline. That's a horrifying situation, because your capacity for any kind of activity shrinks even more, and your world becomes even smaller.
Lousy research funding, no recognised pathology tests or treatments, no cure, and an average recovery rate of just 5 per cent. Generations of ppl with lives laid waste. Govts & medics around the world must wake up to this disaster and act!
这是近年来最好的肌痛性脑脊髓炎科普。想补充的是：劳力后不适（PEM）不仅是症状，更是该病的定义性特征，会导致部分或全部症状显著恶化并引发新症状。
有时PEM无法缓解，成为患者新的基准状态。这非常可怕，因为活动能力进一步萎缩，生活圈变得更小。
研究资金匮乏、缺乏公认的病理检测或疗法、无治愈手段、平均康复率仅5%——几代人的人生被摧毁。全球政府与医疗界必须正视这场灾难并采取行动！
I’m not formally diagnosed but I have a lot of the hallmarks of me/cfs and if I had a dollar for every time a medical professional told me I “needed more exercise” I would be able to pay for the therapy I need from all the people telling me I need more exercise when I tell them I CANNOT. And then I feel like I’m just lazy and not trying hard enough
我虽未正式确诊，但表现出诸多肌痛性脑脊髓炎特征。每次医疗人员对我说"需要多锻炼"，我要是能收一美元，早就能支付他们推荐的理疗费用了——即便我反复申明自己做不到。这种经历让我陷入自我怀疑，觉得是否真的只是懒惰不够努力。
I desperately needed this information like a decade ago when I had mild ME symptoms & decided to start long distance running to “get stronger & healthier.” The last long run I did while training for a marathon was 17 miles & I had to crawl the last mile back to my car. My capacity has gotten smaller & smaller over the years but I just kept pushing past every new limit, hiking & dancing when I could no longer run, walking when I could no longer hike, physical therapy when I could no longer walk. After a presumed Covid infection in 2020 I became completely disabled & unable to work & I’ve spent much of the last 5 years bedbound & unable to even tolerate tv, every part of my life destroyed. For people with the most mild forms of ME it can be hard to recognize PEM, but looking back the two main symptoms for me were insomnia after exertion, & feeling like I was coming down with the flu every couple weeks. It’s important to listen to other patients to learn the variety of ways it can show up. I never would have described it as feeling “tired” or “sleepy.”
十年前出现轻度症状时，我急需这类知识，却选择用长跑"强身健体"。备战马拉松的最后一次长跑17英里，最后1英里是爬回车里的。这些年来身体机能持续衰退，我却不断突破新极限：不能跑就徒步跳舞，不能走就做理疗。2020年疑似感染新冠后彻底丧失工作能力，过去五年多数时间卧床，连电视都看不进去，人生全面崩塌。对于轻度患者，劳力后不适（PEM）可能难以识别，但回想起来我的两大症状是运动后失眠和每两周出现流感样症状。倾听其他患者的多样化经历很重要——我从不会用"疲倦"或"嗜睡"来描述这种感受。
Omg I was not prepared to see the disease I’ve had for 30 years covered by SciShow. Thanks for emphasizing how harmful exercising can be and how tricky it is to pace yourself to keep from getting nailed by PEM!
天啊完全没想到SciShow会报道我患病30年的疾病。感谢强调运动的危害性，以及合理控制活动量避免触发劳力后不适（PEM）的重要性！
Thank you.
I just want to add, that the very severe cases can`t do stuff like doing presentations. The illness can be so bad that even eating can trigger PEM and people actually have died of the disease.
That said, still a big "Thank You". Especially for including and explaining PEM.
感谢。
想补充说明：重症患者根本无法进行演示报告等活动。病情严重时连进食都可能引发劳力后不适，甚至有人因此病去世。
尽管如此还是要说声大大的"谢谢"，特别是对PEM的详细解释。
I think the rest of the comments really reflect how important a video like this is to those of us with ME/CFS. To be seen and heard is so important. And this video does an amazing job of doing just that. So thank you! My only thing I'd add to the video is this illness is so much more than just being tired and having exercise intolerance. I did an extensive tracking of symptoms for around 9 months last year and I have 55 different distinct symptoms that show up from time to time. Some are worse and more debilitating than others but it's a miserable life. I spend 23+ hours per day in bed and even thinking too much or talking on the phone can cause a crash. We need way more research looking into possible treatments and cures. But thank you for helping raise awareness about this illness that affects so many people.
其他评论充分证明了这类视频对患者的重要性。被看见、被听见至关重要，而这期视频完美做到了这点，因此要感谢你们！唯一想补充的是：这种疾病远不止疲劳和运动不耐受。去年我做了9个月详细症状追踪，记录到55种不同症状间歇性出现。有些症状尤其严重并有致残性，患者整体生活质量极差。我每天卧床23小时以上，连过度思考或打电话都可能引发崩溃。我们需要更多治疗研究，但感谢你们帮助提高这种影响众多人群的疾病的认知度。
Extremely accurate and through video, well done. Maybe a small complaint is that severity of ME/CFS gets lost in the amount of information. For example, you say that 80% are unable to work, which is absolutely correct, and then that resting the day before can allow a person with ME/CFS to hold a presentation. This is also technically true but only for the 1-2% of the very pf the mildest cases.
Research has compared different chronic conditions and the results are always the same - ME/CFS is the most debilitating one, and I think that doesn't come through in the video. That this disease destroys ability to have any sort of life. More than congestive heart failure, more than rheumatoid arthritis, more than multiple sclerosis,... all of which are horrible in their own right.
视频内容极其准确全面，制作精良，稍有不足的是疾病严重性在信息洪流中被淡化。比如提到80%患者无法工作（完全正确），但随后说"提前休息能让患者完成演讲"，这在技术层面成立却仅适用于1-2%最轻症患者。
研究对比各类慢性病发现，肌痛性脑脊髓炎始终是致残性最强的——比充血性心力衰竭、类风湿性关节炎、多发性硬化等都严重（当然这些疾病本身也很可怕）。视频未能充分传达这种摧毁人生的破坏力。
Thank you for this correct explanation of ME/CFS. So many of us have to waste precious energy to combat the never ending harmful misinformation. Cognitive exertion beyond energy capacity also causes damage. Thank you again.
感谢对肌痛性脑脊髓炎的正确解读，我们中太多人不得不耗费宝贵精力辨别海量的错误信息。现在认识到了消耗超出身体的能量储备同样会造成伤害，再次感谢。
Person with ME/CFS here (20+ years). Thanks for covering this, and especially for pointing out that graded exercise therapy is actively harmful for us. Medical professionals are largely under-informed on ME/CFS, which makes getting healthcare a nightmare if you have ME/CFS.
20余年肌痛性脑脊髓炎患者在此致谢。感谢报道，特别是明确指出分级运动疗法对我们的危害。医疗界普遍缺乏相关知识，导致患者就医如同噩梦。
So glad to see ME finally getting attention. A dear friend of mine developed ME in the lates 00s and suffered with no diagnosis for years, followed by no or bad advice from doctors for years until the science finally progressed a tiny bit.
欣慰看到肌痛性脑脊髓炎终获关注。挚友00年代末患病，多年未确诊，之后又遭医生错误建议，直到近年科研稍有进展才好转。
I can't imagine what people with ME/CFS go through. I've always been a sleepy person. I need 9-10hrs of sleep a night, and still need caffeine through the day. I don't know how many people have told me "the reason you're so tired is you sleep too much." Yes, because when I can only get 6hrs, I'm exhausted all day, but when I get 10, I'm good to go.
A year and a half ago I had knee replacement and realignment, in my 30's. My improvements have been so much more than just getting rid of the knee pain. Apparently my knees being misaligned took extra energy on my body and there was quite a bit of inflammation. Now that that has been improved, I'm not quite as sleepy and have been able to start making improvements to my health.
难以想象肌痛性脑脊髓炎患者的处境。我本人长期嗜睡，需每晚睡9-10小时，白天仍需咖啡因提神。无数人告诉我"你困是因为睡太多"——是啊，睡6小时整天昏沉，睡10小时就精神焕发。
一年半前接受膝关节置换矫正术（30多岁），改善远超预期。原来膝关节错位消耗额外体能并引发炎症，术后嗜睡减轻，健康状况逐步提升。
As a teen who has been diagnosed with chronic fatigue for several years and rarely sees my condition talked about, it’s so gratifying to see my favorite show cover it! Happy to say that with years of physical therapy (for muscle atrophy) I’ve gone from bedridden to hospitalized to wheelchair-user and I’m finally able to get around with my cane! Much love to all of us with chronic fatigue
作为确诊慢性疲劳数年的青少年，很少见到相关讨论，因此看到最爱的节目报道实在欣喜！很高兴告诉大家：经过多年针对肌肉萎缩的理疗，我已从卧床发展到住院治疗，再进步到使用轮椅，现在终于能拄拐行动了！向所有慢性疲劳战友送上爱心
NICE in the UK already told the NHS that increasing exercise doesn't work 4 years ago.
英国国家健康与护理卓越研究院（NICE）四年前就已告知国民保健署：增加运动量对治疗无效。
If I push myself too hard, my CFS flares right up. I can spend several days feeling like I've been in a car accident- sore all over, swollen feeling, nothing touches the pain.
若过度勉强自己，慢性疲劳综合征就会爆发。随后数日会像遭遇车祸般全身疼痛肿胀，任何止痛手段都无效。
Wow, it seems people with CFS in the comments really appreciated this video, that's great!
It's sad to see that this many people had this many issues with doctors invalidating their condition and sometimes even making it worse through bad advice. But, according to comments, it's good that a channel this size is covering this correctly, and wow, just the title helped sooo many people feel validated, it's great!
I didn't know anything about CFS before Diana from PhysicsGirl got it and it seems really important for people to know.
哇，评论区里慢性疲劳患者们真心喜爱这期视频，太棒了！
看到这么多人遭遇医生否定病情、甚至因错误建议加重病状，实在心酸。但根据评论，这样规模的频道正确科普意义重大——单是标题就让无数人感到被认同，实在太好了！
在Physics Girl的Diana患病前，我对这病一无所知，现在明白普及知识多么重要。
@WendeCrow
Thank you for letting the public know! I've lived with MECFS for six years now, and it's exhausting explaining it to people, especially closed-minded ignorant doctors who stop listening as soon as they hear the word fatigue.
My heart goes out to all of you in these comments living with this awful disease. May we all live better healthier lives than we do today
感谢提升公众认知！患病六年来，向人们解释病情令人精疲力尽，特别是那些听到"疲劳"就拒绝沟通的固执医生。
衷心祝愿评论区所有病友都能获得比现在更好的健康生活。
from the ME/CFS community: thank you so much for this video.
来自肌痛性脑脊髓炎社群：衷心感谢这期视频。
My doctor has been telling me to exercise over and over again and I’ve been telling her it makes me more exhausted….
我的医生反复叮嘱要多锻炼，可我不断解释这只会让我更疲惫…
A friend of mine has been living with ME/CFS for over a decade now.
Thank you for raising awareness!
挚友与肌痛性脑脊髓炎共处已超十年。
感谢提升公众认知！
I was diagnosed with CFS in 2001 and given no support system or material to help me deal with it. I simply learned to "cope" and be told repeatedly that I need to exercise, lose weight, and work on my anxiety. I know SciShow does their due diligence in researching topics before creating a video. Thank you for taking the time to explain this so thoroughly - it's simply just nice to feel validated every now and again.
2001年确诊慢性疲劳综合征时，我未获得任何支持体系或资料，只能自学"应对"，并不断被要求锻炼、减肥、治疗焦虑。我就知道SciShow制作视频前会做足功课，感谢你们详尽解说——偶尔获得认同感实在美好。
Been sick with ME/CFS for over 15 years. This was a great video, thanks for helping spread awareness of this devastating illness.
患病超15年，这期视频很棒，感谢帮助传播这种毁灭性疾病的认知。
I saw a documentary on this a few years ago and it completely opened my eyes. I used to joke that I have chronic fatigue because I’m tired all the time. I don’t joke about it anymore. It’s not funny. I don’t sleep well, which is why I’m always tired. But it’s not even close to cfs. My heart goes out to all those who have it. ️
几年前看过相关纪录片后彻底改变认知。我曾开玩笑说自己有慢性疲劳，因为总是疲倦。现在不再开这种玩笑——这一点都不好笑。我虽因睡眠差常感疲倦，但这与慢性疲劳综合征天差地别。向所有患者致以诚挚关怀。
My wife has had me/cfs for 15 years. Thank you for this video, I hope more people will be educated about this horrible disease and I hope that one day the cure will be found.
妻子患肌痛性脑脊髓炎15年。感谢这期视频，期盼更多人了解这种可怕疾病，祈愿终有一天找到治愈方法。
Thank you for making this video. I teared up when I saw the title. I got officially diagnosed last January, but it's been a struggle for almost 4 years trying to figure out what's been happening to me. I used to run cross country and now I'm an ambulant wheel chair user.
感谢制作这期视频，看到标题时热泪盈眶，去年一月正式确诊，但近四年来一直在苦苦寻找病因。我曾经是越野跑者，如今只能用轮椅。
Former A&E/ER nurse that, shortly after an injury and several upper respiratory infections, ended up almost bed bound. Docs said Post Viral Fatigue, then Chronic Fatigue Syndrome, then Fybromialgia and basically left to get on with it. 10 YEARS LATER and, although I'm nowhere nearly as bad as when it initially hit me, I am still dealing with the daily exhaustion, pain and the lovely brain "fog "! Was never able to go back to work. Add in hEDS, peri-menopause and probable undiagnosed ADHD to the mix and its quite the party!
You really do feel as though your life has been stolen from you and it sucks
My heart goes out to all the younger ones affected by this
我是前急诊科护士，受伤及多次上呼吸道感染后几乎卧床，医生诊断从病毒后疲劳到慢性疲劳综合征，再到纤维肌痛症，最后撒手不管。十年过去，虽比发病初期好转，仍每日与疲惫、疼痛和脑雾作伴，无法重返职场，再加上关节过度活动综合征、绝经期和疑似未确诊的ADHD，真是"热闹非凡"呀（自嘲）！ 确实有种人生被偷走的感觉，糟透了，也特别心疼年轻病友们。
I pushed for years and now I spend 22 hours a day in bed. I need that amount of rest just to be able to get up three times a day and microwave a meal.
多年强行坚持后，如今每天卧床22小时。需要如此长时间休息，才能勉强起身三次用微波炉热饭。
I actually teared up watching this. I got ME/CFS from mono in college. I had to drop out and never returned. I’ve had this horrible disease for 25 years and it took 9 years to get a diagnosis.
I’ve watched the research improve and have been so happy that we’re finally on the radar.
THANK YOU SciShow! I’ve loved you guys for years and seeing that you got the science right on this confirms just how great you are.
看这个视频时我哭了。我大学时因单核细胞增多症患上ME/CFS，不得不辍学且再也没能回去。这可怕的病折磨了我25年，确诊却花了9年。
看着研究逐渐进步，终于有人关注我们，我真的很欣慰。
感谢SciShow！我关注你们多年，看到你们科学严谨地呈现这个主题，再次证明你们的优秀。
I've been bedbound for almost 3 years from CFS (I'm 31, diagnosed since 19 though). It's completely decimated every part of my life and theres nothing any of my doctors can do.
我因慢性疲劳综合征（CFS）卧床近三年了（现年31岁，19岁确诊）。它摧毁了我生活的每时每刻，而医生们却束手无策。
As someone that has had ME/CFS for 20 years - THANK YOU .
After I was unable to leave my house/semi bed bound after I worsened my baseline by just purely trying to live the life I had before I got sick, I was still treated like I was lazy and that needed to push myself to do more even though I was crashing just from trying to eat a full meal.
To know that people are still being prescribed GET is incredibly upsetting.
作为ME/CFS患者20年的人——感谢你们。
我曾因强撑病前生活导致病情恶化，变得无法离家甚至半卧床，但人们仍把我当懒人，逼我做更多事，哪怕仅仅是吃完一顿饭就虚脱。
得知至今还有人被开分级运动疗法（GET），实在令人心寒。
Thank you so much for making us feel seen.
I'm 25 and I've been dealing with this for 7 years.. I used to be active, able to do so many things, and now I only leave my bed to go to the bathroom or to appointments. It was a multiple year struggle to get my doctors to take it seriously and help me get a wheelchair, and it didn't happen until the end of last year.
After being pushed too hard in physical therapy and having to go to the ER, I haven't been able to stand for more than a few minutes.
谢谢你们让我们感到被看见。
我25岁，与这病抗争7年。曾经活跃能干，如今下床只为如厕或就医。花了数年才让医生认真对待、帮我申请轮椅，而去年底才实现。
因物理治疗过度被送急诊后，我现在连站立几分钟都做不到。
Thank you for covering this! ME/CFS research is severely underfunded, and many studies, like the infamous PACE trial, have been deeply flawed. It’s crucial that we push for more rigorous biomedical research to truly help patients.
感谢报道！ME/CFS研究资金严重不足，且许多研究（如臭名昭著的PACE试验）存在严重缺陷。推动更严谨的生物医学研究才能真正帮助患者。
Wow, thank you for staying on top of this topic! I’ve been sick twelve years, took everything from me. Had to stop studying, lost my job. So seeing some understanding here is fantastic!
哇，感谢持续关注这个议题！我病了十二年，失去学业和工作，能在此看到理解的声音太棒了！
I have ME/CFS, been living with it for 5 years now. I used to do HIIT regularly, was learning to play roller derby, and was doing my PhD (and doing exceptionally well - my supervisors were very clear about that) — 5 years later and I'm still trying to push through my PhD, though am considered at risk of non completion, can barely get any progress done most weeks - and I can't even climb a flight of stairs, let alone walk around my own apartment without potentially collapsing... I'm in my early 30s. ME/CFS has completely upended my life — maybe one day there will be a treatment - but for now I really just hope people will start believing us...
我患ME/CFS五年。曾经规律做高强度间歇训练、学轮滑、读博（表现优异——导师们明确认可）。如今五年过去，我仍在挣扎完成博士学业，被判定可能无法毕业，每周几乎无进展，连爬楼梯都做不到，在公寓走动都可能倒下……我才三十出头。这病彻底颠覆了我的生活——或许未来会有疗法，但眼下我只希望人们能相信我们。
Thanks for spreading awareness - I went undiagnosed for 10 years as nobody, not even my Doctors, ever mentioned ME as a potential cause of my worsening and debilitating symptoms. Instead, I continued to push through, thus making myself worse. I wish there had been a video like this back then.
感谢提高认知——我十年未确诊，因为连医生都没提过ME可能是症状恶化的原因。我反而强撑导致病情加重，多希望当年就有这样的视频。
Great video! As someone who has been diagnosed with me/cfs, I really appreciate the care that you took explaining it.
视频很棒！作为ME/CFS确诊者，感谢你们细致准确的解释。
Thank you for this video. I've been living and struggling with CFS for around 25 years now. I did incredible amounts of damage to myself through GET and generally pushing myself too hard because that is what I kept being told was necessary. Finally science has caught up with what I, and so many others, have been experiencing and expressing. Exercise makes us worse.
Now, if I could get my doctor to actually educate himself about this as he knows literally nothing about CFS. Which is absolutely disgraceful yet all too common. I hope videos like this and other efforts finally start turning things around in the medical field. So many doctors are responsible for untold suffering and they don't even seem to care when confronted with it.
感谢这则视频。我与CFS抗争25年，因听从医嘱进行分级运动疗法（GET）和过度强撑，对自己造成巨大伤害。如今科学终于印证了我和众多患者的经历：运动会恶化病情。
现在，我只希望我的医生能去了解CFS——他对这病一无所知，这很可耻却普遍。希望此类视频能扭转医疗界的认知。太多医生造成了无尽痛苦，面对事实却无动于衷。
Been living with it since childhood, finally diagnosed literal decades later. It's such a nightmare to navigate the world when everyone thinks you should just work out through it. Living like this hurts so much, I've had to give up most of what I love and live off disability house-bound often bed-bound and isolated praying I don't get infected again or they decide to cut the safety net again and force me to destroy myself deeper again. Why would I make this up, pretend to have it. No one wants this. It's really heartening to see a big source cover this, and cover it well, maybe slowly but surely things will really get better for us.
自幼患病，几十年后才确诊。当全世界都认为你该"锻炼克服"时，生活如同噩梦。被迫放弃所爱，靠救济金度日，困于家中甚至卧床，孤立无援，祈祷别再生病或福利被砍——谁会编造这种病？看到权威媒体深入报道，真的鼓舞人心，或许我们的处境终将改善。
I think everyone with chronic fatigue knew this already hey at least people might believe us now..
我想所有慢性疲劳患者早已知晓这些，但至少现在人们或许会相信我们了。
Thank you, SciShow, for validating people's lived experiences.
SciShow，感谢你们验证了患者的真实经历。
Thank you for making this informative video!!️ So many ME/CFS sufferers experience having their health ruined, and are even killed by hospitals that are supposed to help them by among other things starvation, by being refused nutrition when they've become too sick to even chew food themselves. Right now a young girl is placed in mental institutions instead of hospital, because they're saying she's just crazy when she's too sick to function and needs medical care. Girls and women like her have died before because of abuse like this, and if nothing happens, more will die. All because doctors and governments refuse to listen to the pasients, despite very severe and deadly symptoms.
感谢制作这则科普视频！！️许多ME/CFS患者不仅健康被毁，甚至因医疗机构拒绝提供营养支持（当他们虚弱到无法咀嚼时）而丧命。目前有个重病女孩被送精神病院而非医院，只因医生称她"发疯"，实则她需要医疗护理。类似遭遇已导致多名女性死亡，若现状不改，悲剧将继续。这一切只因医生和政府无视患者的严重症状。
I have a friend who has this condition and I can see that it's really not understood by medical workers. Very frustrating
我朋友患此病，医务人员显然不理解它，令人沮丧。
Gonna echo a lot of the other comments and say thank you for this! I worsened my condition by overdoing it for over a year before I actually understood that trying to push through things just hurt me. I hope this video reaches others who are at tge onset of illness so that they won't make the same mistakes many of us made out of ignorance. I'm still struggling to hold myself in my limits so reaffirmation that I need to do so is always helpful.
跟其他评论一样想说声感谢！我曾强撑一年导致病情恶化，后来才明白"硬扛"有害。希望这视频能帮助新患者避免重蹈覆辙。至今我仍在学习控制活动量，这样的提醒很有帮助。
I have had this for two years, triggered by mild COVID. If people understood what it was like, it would be their worst fear.
我因轻症新冠触发此病已两年。若世人知道这病的真实模样，定会视为最可怕的噩梦。
This is a pretty good introduction to ME/CFS and I for one am grateful to see any good awareness raised about this disabling disease! One thing I would say is that this video is really talking about mild ME/CFS. Severe ME/CFS is a different beast entirely, people are completely housebound or even bedbound and tube-fed so there would be as much chance of doing an activity like a presentation as going to the moon. For many of us just the bare bones basic daily tasks of eating and washing can immobilise us. Life has to be spent horizontal and barely exerting any energy at all. Even just talking can be too much exertion.
这是对ME/CFS很好的科普，感谢提高对致残性疾病的认知！但需指出视频描述的是轻度患者。重度ME/CFS截然不同——患者完全居家甚至卧床靠鼻饲，做演讲的可能性堪比登月。对我们很多人而言，吃饭洗漱等基本活动就能导致崩溃，生活只能平躺，连说话都是过度消耗。
Thank you so much for covering this, especially the disgraceful PACE trial. The people involved with that should be sued for all the damage and misery they've caused. Coverage like this is essential.
特别感谢揭露可耻的PACE试验！相关责任人该为造成的伤害被起诉。此类报道至关重要。
Thanks for raising awareness. CFS/ME has ruined my life. I got it right after the pandemic and my wedding. I had many goals and aspirations but now I am bedbound in pain and sickness until a cure is found.
感谢提高认知。CFS/ME毁了我的生活——疫情后婚礼刚结束就患病。曾经满怀理想，如今只能卧床苦等疗法。
Thanks for covering this. PEM is so debilitating.
感谢报道。运动后不适（PEM）的致残性太强了。
If they listened to us sooner, they'd know this! Happy they're finally listening.
早听患者的话早明白了！很高兴他们终于开始倾听。
Thank you so much for covering this subject, I got ME/CFS in high school before COVID and now am in my early 20s, my condition has slowly been getting worse and I am getting an electric wheelchair soon. People are completely unaware of this condition and often think I’m just being lazy including my relatives & father. Having ME/CFS makes it very exhausting to explain the conditions over and over again to people who are unaware. So thank you for educating people! I will definitely be sending this video to people in the future to save myself some energy.
万分感谢报道这个主题！我高中时（新冠前）患ME/CFS，现二十出头，病情逐渐恶化即将用电动轮椅。包括亲属和父亲在内的人们完全不懂这病，总认为我懒。反复解释太耗精力，所以感谢你们做科普！以后直接转发这视频，能省点力气。
Thank you for giving this a well needed spotlight! I've been suffering from ME for over a decade. We desperately need more public attention and funding.
感谢聚焦这个急需关注的话题！我患ME超十年，我们迫切需要公众关注和研究资金。
Thank you SciShow for this thoughtful and thorough descxtion of this illness. It's a miserable condition. I'm 2 1/2 years in and it turned my life upside down. Used to be a runner, dancer, biker, hiker. Was involved in all kinds of activities in my community. Now I can barely walk around the block. The information you shared in this video will help raise awareness and might put some good pressure on medical practitioners and researchers to do better.
感谢SciShow深入详实的疾病描述。这病太折磨人——两年半前患病，生活天翻地覆。曾是跑者、舞者、骑行徒步爱好者，参与各种社区活动，如今绕街区走一圈都勉强。此视频信息将提高人们的认知，或许能推动医疗界进步。
Good video with simple explanations for those who don’t know anything about MEcfs
视频很棒，为不了解ME/CFS的人提供了浅显解释。
ME/CFS is worse than death. It is everyday torture. Millions of sufferers desperately need help.
ME/CFS比死亡更可怕，是日复一日的折磨。数百万患者急需救助。
Thank you for making a video about ME/CFS, more studies need to be done and patients need to be taken seriously! People in my family have this illness and were told by NHS consultant doctors that it was psychological when it clearly isn't. There's so much stigma and misinformation surrounding this illness so thank you for presenting the facts.
感谢制作ME/CFS视频！需更多研究并认真对待患者。我家人患此病，NHS专家竟说是心理问题，荒谬至极！这病污名与谣言太多，感谢你们陈述事实。
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Thank you so, so much for talking about us... This illness needs so much more public awareness and understanding. I felt like crying just seeing the name of your video... Medical experts have been forcing me to try to exercise without listening to my pleas about the impact it has on me. Thank you
真的非常感谢你们为我们发声…这病急需更多公众理解。光是看到视频标题我就想哭…医学专家曾强迫我锻炼，无视我的哀求。谢谢你们。
i have me/cfs and it is life ruining. thanks so much for talking about it
我患ME/CFS，人生被摧毁。感谢你们讨论它。