運(yùn)動(dòng)也有“危害”？如果患有慢性疲勞綜合征，請(qǐng)停止運(yùn)動(dòng)

@agylena
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，擔(dān)任健身房經(jīng)理、私人教練，登山（頻道的舊視頻還在）、擼鐵、騎行樣樣精通，我活著就是為了保持活躍。剛患病時(shí)我拼了命想繼續(xù)生活，結(jié)果卻導(dǎo)致病情不可逆地惡化。近8年后的現(xiàn)在，我完全被困在家中臥床不起，偶爾出門（僅限就醫(yī)）必須坐輪椅。我失去了整個(gè)人生，但人們依然覺得我們"不夠努力"，仿佛我們只是懶得康復(fù)。

@NHarding-d6f
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.

你們揭露了PACE試驗(yàn)的學(xué)術(shù)欺詐，這比什么都重要。這個(gè)事件是幾十年來ME/CFS患者持續(xù)遭受傷害的轉(zhuǎn)折點(diǎn)，非常感謝你們報(bào)道這種毀滅性的神經(jīng)免疫疾病。

@sogwatchman
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后無法工作，每天至少睡半天，做點(diǎn)簡單事就精疲力盡。更諷刺的是，政府竟然駁回了她的殘疾認(rèn)定申請(qǐng)。
原創(chuàng)翻譯：龍騰網(wǎng) http://m.top-shui.cn 轉(zhuǎn)載請(qǐng)注明出處

@hughcaldwell1034
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.

必須強(qiáng)調(diào)的是，勞累后不適（PEM）發(fā)作可能永久降低身體機(jī)能基線。比如原本每周能勉強(qiáng)繞街區(qū)散步一次，某天過度活動(dòng)導(dǎo)致崩潰后，可能連臥室到廚房的距離都成為極限，稍越界就會(huì)引發(fā)下次崩潰。（聲明：非醫(yī)學(xué)建議，請(qǐng)查閱最新研究并咨詢專業(yè)醫(yī)師）

@feekygucker2678
17 years diagnosed... gnarly... used to go climbing, hill walking, swimming... when i go out now it's in an electric wheelchair

確診17年...曾經(jīng)登山、徒步、游泳樣樣在行...如今出門全靠電動(dòng)輪椅代步。

@francescaa8331
THANK YOU. We suffer not just from our illness, but from the ignorance of millions. Often our own doctors.

感謝！我們不僅要承受病痛，還要面對(duì)無數(shù)人的無知——很多時(shí)候包括自己的主治醫(yī)生。
原創(chuàng)翻譯：龍騰網(wǎng) http://m.top-shui.cn 轉(zhuǎn)載請(qǐng)注明出處

@singingblueberry
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，至少在我國（德國），康復(fù)診所會(huì)強(qiáng)迫ME/CFS患者進(jìn)行有害的運(yùn)動(dòng)治療。更糟的是，如果你拒絕接受這種治療，政府可能會(huì)停發(fā)失業(yè)者的社會(huì)福利金。

@RDGoodner
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.

我以為經(jīng)歷過小兒麻痹癥后，人類早該明白對(duì)機(jī)能衰退者說"再加把勁"是荒謬的。但轉(zhuǎn)念想到現(xiàn)實(shí)——人類從歷史中學(xué)到的唯一教訓(xùn)，就是從不吸取任何教訓(xùn)。

@SigynLittleFox
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。十多年來我一直告訴醫(yī)生運(yùn)動(dòng)會(huì)加重病情，得到的總是"你只是不習(xí)慣運(yùn)動(dòng)了"或"多練就能見效"。現(xiàn)在終于知道自己沒瘋，只是遇到了充耳不聞的醫(yī)生。順便說，我把發(fā)作期戲稱為"社交宿醉"，因?yàn)橥诔鲩T辦事或社交后出現(xiàn)（苦笑）。

@totallynotdelinquent5933
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.

向人解釋CFS（尤其面對(duì)雇主）簡直令人抓狂。申請(qǐng)殘疾津貼難如登天，我只能被迫工作，而找上份工作花了八個(gè)月——因?yàn)楦緵]人相信這種病存在。

@Mallowolf
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+公開水域游泳愛好者。普通疲憊是疼痛，而CFS是像操縱提線木偶般控制身體，同時(shí)經(jīng)歷流感+宿醉的疊加態(tài)。如果你有類似感受，別讓無知醫(yī)生說成"抑郁焦慮"，去找病友群和?？漆t(yī)生吧。感謝SciShow！

@lorrygoth
Turns out you can't gain spoons by spending spoons.

事實(shí)證明，"用掉能量勺"并不會(huì)"賺到更多能量勺"。（注：能量勺理論是慢性病患者用來比喻有限精力的經(jīng)典表述）
原創(chuàng)翻譯：龍騰網(wǎng) http://m.top-shui.cn 轉(zhuǎn)載請(qǐng)注明出處

@katarh
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.

我屬于"運(yùn)動(dòng)緩解疼痛"的特殊體質(zhì)，這幫助醫(yī)生排除了CFS（實(shí)際確診hEDS遺傳性結(jié)締組織?。?。五年前開始力量訓(xùn)練，現(xiàn)在能硬拉自重、腿舉500磅。但多年來CFS患者都清楚運(yùn)動(dòng)會(huì)加劇痛苦，希望未來能找到有效療法。

@dragonluvver975
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

這種綜合征讓我毛骨悚然。剛讀到醫(yī)療系統(tǒng)因"病因不明"拒診年輕女性的報(bào)道，太令人心碎了。

@KiKiSomthn00
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!

單看標(biāo)題"運(yùn)動(dòng)加劇慢性疲勞"就想說：哈！這事我們患者早八百年就知道了（本人因其他疾病有慢性疲勞）。但凡有人愿意聽我們說不該做什么...畢竟朝夕相處最懂自身狀況對(duì)吧？然而現(xiàn)實(shí)是，每個(gè)醫(yī)生只會(huì)重復(fù)"多走路"的建議。

@cfsdocbrown
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

身為ME/CFS患者兼現(xiàn)任醫(yī)生，衷心感謝你們提高社會(huì)認(rèn)知。過去50年對(duì)ME患者的待遇配不上他們應(yīng)得的尊嚴(yán)，科學(xué)和醫(yī)學(xué)都辜負(fù)了他們。如今能在這個(gè)領(lǐng)域行醫(yī)是我的榮幸，這里既有值得探索的科學(xué)奧秘，又有值得幫助的美好人群。向所有ME/CFS病友傳遞愛意。

@KC-ie2hl
“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

"運(yùn)動(dòng)后像得流感"精準(zhǔn)描述了PEM感受：全身劇痛、骨髓深處的疲憊、虛弱到起身都困難、大腦混沌到無法追劇更別說做決定，外加難以名狀的痛苦（不適感）。有些人甚至伴隨咽喉痛。視頻做得很棒，ME/CFS長期被忽視淡化，感謝你們認(rèn)真調(diào)研并提及無效的漸進(jìn)運(yùn)動(dòng)療法（GET）研究，病友群體需要這種基于事實(shí)的認(rèn)知。
原創(chuàng)翻譯：龍騰網(wǎng) http://m.top-shui.cn 轉(zhuǎn)載請(qǐng)注明出處

@mariposahorribilis
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.

這類內(nèi)容需要權(quán)威渠道廣泛傳播，因?yàn)榇蟊姡òê芏噌t(yī)療從業(yè)者）似乎聽不進(jìn)我們的聲音。感謝SciShow為此做出的貢獻(xiàn)。

@evilevan9687
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毀了我的人生。太多醫(yī)生誤解這種病，用"多運(yùn)動(dòng)"的說辭對(duì)患者進(jìn)行心理操縱，導(dǎo)致永久性傷害。感謝你們幫忙傳播真相。

@SakuraAsranArt
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.

作為向人解釋CFS二十年的患者，此刻有千言萬語想說，但考慮到評(píng)論區(qū)可能有未成年人，就不破口大罵了。

@flashley630
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

當(dāng)虛弱到難以下床時(shí)，卻被指責(zé)"不夠努力康復(fù)"和"需要多運(yùn)動(dòng)"，這種經(jīng)歷令人心碎?？吹竭@類信息詳實(shí)的視頻真是太好了。

@julieneedsadualie5045
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歲因新冠誘發(fā)ME/CFS而臥床不起，被迫中斷機(jī)械工程學(xué)位，現(xiàn)在靠父母照顧。感謝報(bào)道，這事太重要了。
原創(chuàng)翻譯：龍騰網(wǎng) http://m.top-shui.cn 轉(zhuǎn)載請(qǐng)注明出處

@lcpl4liferod23
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！我從沒聽過有人認(rèn)真討論這個(gè)病，要么輕描淡寫要么錯(cuò)誤百出?；疾〕?，至今解釋病情時(shí)仍無人理解。謝謝你們。

@PoppingMagnus
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.

這病最折磨人的，是連醫(yī)療從業(yè)者都不愿理解"患者只需要休息"這個(gè)簡單事實(shí)。

@grapes3636
It’s so hard to explain to people that my partner isn’t just tired, he’s sick. Thank you for covering this.

很難讓人明白我伴侶不是"犯懶"，而是真的病了。感謝報(bào)道。

@r.1599
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.

很高興你們說ME/CFS是神經(jīng)疾病，現(xiàn)在請(qǐng)去說服我的神經(jīng)科醫(yī)生——當(dāng)我這么說并求助時(shí)，他罵我是傻子。

@DimeSpin
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.

約20年前我開始長期患病，當(dāng)時(shí)研究病因時(shí)了解到CFS/ME（后來排除因無典型癥狀），但清楚記得那些恐怖故事：醫(yī)生強(qiáng)迫患者運(yùn)動(dòng)導(dǎo)致惡化，治療無效后反而責(zé)怪患者"裝病求關(guān)注"。如今聽到SciShow說出患者心聲，這種震撼是積極的，這類患者理應(yīng)得到更好的對(duì)待。

@TheSunnyOne
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歲，長新冠+ME/CFS+纖維肌痛+體位性心動(dòng)過速綜合征+埃勒斯-當(dāng)洛綜合征等。ME/CFS徹底毀了我的人生：原有事業(yè)、房產(chǎn)、生活全沒了，曾經(jīng)能步行去任何地方，現(xiàn)在搬回父母家，常臥床幾乎不出門，靠輪椅代步。最糟的是嚴(yán)重失眠——時(shí)刻精疲力盡，身體卻拒絕入睡。

@erikn.7540
My mom was debilitated by this disease. Thank you for calling attention to it.

我母親被這病折磨得不成人形，感謝你們喚起人們的關(guān)注。
原創(chuàng)翻譯：龍騰網(wǎng) http://m.top-shui.cn 轉(zhuǎn)載請(qǐng)注明出處

@krystalreverb
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."

我要把這視頻轉(zhuǎn)發(fā)給所有前任醫(yī)生（現(xiàn)主治除外），特別是那位只會(huì)說"練瑜伽+每日心理暗示"的前心理治療師。

@MePeterNicholls
Had it 20 years now. And my god the gas lighting and prejudice I’ve been exposed to.

患病二十年，天知道我經(jīng)歷了多少心理操縱和偏見。

@sagesufferswell
My doctors pushed me so hard, not knowing what was wrong, that I'm a mostly bedbound wheelchair user now.

醫(yī)生在不明病因的情況下過度治療，導(dǎo)致我現(xiàn)在基本臥床靠輪椅生活。

@evilredbubble7557
THANK YOU - I have had this for 4.5 yrs since Covid. Shattered my life. We desperately need funding and research.

感謝！新冠后患病四年半，人生支離破碎。我們急需研究資金。

@fin600
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!

感謝這期節(jié)目！希望能報(bào)道其他冷門疾病，如埃勒斯-當(dāng)洛綜合征和體位性心動(dòng)過速綜合征。

@StudioAstrig
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

感謝關(guān)注！此刻是我崩潰期的第三天（已臥床，多年無法運(yùn)動(dòng)），需要更多人理解這種病。

@hilaryb8807
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病毒感染確診CFS，雖幸運(yùn)得到頂級(jí)病毒學(xué)家診斷，但無人知曉療法。大半輩子都在聽"好不了是因?yàn)檫\(yùn)動(dòng)不夠"，盡管我強(qiáng)調(diào)運(yùn)動(dòng)會(huì)惡化！直到新冠出現(xiàn)，人們才正視CFS不是"懶人借口"。

@bwezil
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.

感謝報(bào)道！這病讓我恐懼至極，主因是無人知曉或重視。感謝制作這支便于轉(zhuǎn)發(fā)的科普視頻，另外強(qiáng)調(diào)：觸發(fā)PEM可能永久降低身體機(jī)能基線！

@Shizukanexen
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.

醫(yī)生診斷我為"新冠后慢性疲勞"，最近遇到確診ME/CFS的相似病友后，我意識(shí)到自己可能也是。我曾拼命保持活躍堅(jiān)持行走...結(jié)果每次都更糟。五年人生被偷走，如今身體狀態(tài)史上最差，時(shí)而感到絕望。但每次看到你們討論長新冠等相關(guān)話題，總能重燃希望，真的非常感謝。

@tavismcg
Thank you for raising awareness. ME/CFS is a devastating illness.

感謝提高認(rèn)知，ME/CFS是毀滅性的疾病。
原創(chuàng)翻譯：龍騰網(wǎng) http://m.top-shui.cn 轉(zhuǎn)載請(qǐng)注明出處

@Lena_WH
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!

臥床第四年剛開始的我，看到真正解釋ME的視頻欣喜若狂。曾被醫(yī)生用"疼痛是你的幻覺"和"堅(jiān)持運(yùn)動(dòng)就能好"的說辭折磨，明明連呼吸移動(dòng)都困難。更可怕的是因醫(yī)生可能帶來傷害而不敢再求醫(yī)了。收到視頻推送時(shí)很緊張——太多權(quán)威渠道傳播錯(cuò)誤信息——但結(jié)果充滿感激，現(xiàn)在又多一個(gè)能用來解釋病情的視頻了！

@lwolfstar7618
Amazing that people can tell doctors this for YEARS and get gaslit or labelled a problem patient.

難以置信：患者向醫(yī)生陳述病情多年，反遭心理操縱或貼上"麻煩病人"標(biāo)簽。

@suzanneirving7257
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.

耗時(shí)8年、面診37位醫(yī)生才確診。多數(shù)醫(yī)生隨便驗(yàn)血就說"心理問題"，最后自己查資料找到該領(lǐng)域頂尖醫(yī)生才確診，最憤怒的是加拿大政府不給我們稅務(wù)減免，因?yàn)槲覀?不算殘疾人"。

@VickiLovesDoctorWho
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

感謝詳盡報(bào)道，特別是揭露造成長期傷害的PACE試驗(yàn)！患病21年病情持續(xù)惡化，NHS任由我和其他患者自生自滅。盡管新冠可怕，但希望它能促進(jìn)對(duì)病毒感染后遺癥的理解和資金投入?；蛟S此生等不到治愈，但相信會(huì)出現(xiàn)某種療法。

@ChaoticLizard
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.

近幾年多次更換家庭醫(yī)生，因?yàn)樗麄儚牟徽J(rèn)真對(duì)待我的慢性疲勞，只做基礎(chǔ)驗(yàn)血就建議"多運(yùn)動(dòng)"，盡管我有通勤步行兩年后耐力反而下降的實(shí)證?？吹酵扑]欄出現(xiàn)這視頻，感覺自己的經(jīng)歷終于被正名。

@marieugorek5917
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!

和往常一樣，醫(yī)生們幾十年來一直忽視肌痛性腦脊髓炎/慢性疲勞綜合征患者（其中大部分是女性）的呼聲，就因?yàn)槟硞€(gè)沒患過這種病、但名字后面掛著一堆頭銜的家伙，基于個(gè)人偏見堅(jiān)信人類本質(zhì)是懶惰的。
真正了解這種疾病的專家，是那些親身經(jīng)歷的患者??！
原創(chuàng)翻譯：龍騰網(wǎng) http://m.top-shui.cn 轉(zhuǎn)載請(qǐng)注明出處

@HolldollMcG
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.

新冠疫情造成了大規(guī)模致殘事件，讓無數(shù)幸存者陷入更糟糕的境地，這還不包括死亡人數(shù)。
感謝你們討論這個(gè)話題。我雖未患慢性疲勞綜合征，但認(rèn)識(shí)的患者讓我明白，這類科普能幫助大家培養(yǎng)更多同理心。

@violetclarke8985
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.

我患有肌痛性腦脊髓炎及多種相關(guān)自主神經(jīng)失調(diào)問題。大學(xué)期間感染后，歷經(jīng)約12年才確診。由于社會(huì)對(duì)這種疾病的認(rèn)知空白，我承受了巨大痛苦——當(dāng)我的能力無法與常人相比時(shí)，所有人都認(rèn)定我是懶惰。
作為親歷者和資深教師，我認(rèn)為懶惰本質(zhì)上不存在。當(dāng)人們達(dá)不到你的期待時(shí)，背后必有原因，絕非單純想偷懶。沒人愿意像行尸走肉般活著，這種狀態(tài)往往是實(shí)在無法保持清醒時(shí)的最后選擇。

@cherenkov_blue
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.

作為"長期新冠"重癥患者，相關(guān)討論如此匱乏實(shí)在令人沮喪。值得慶幸的是，經(jīng)過兩年我的疲勞和腦霧已基本消退，但認(rèn)識(shí)的患者中有人毫無改善，部分確診了肌痛性腦脊髓炎。每次聽到有人說新冠"不過就是流感"，我都?xì)獾孟氤蹲约侯^發(fā)。
原創(chuàng)翻譯：龍騰網(wǎng) http://m.top-shui.cn 轉(zhuǎn)載請(qǐng)注明出處

@throughcolouredglasses9300
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.

這讓我怒火中燒。我朋友新冠后患上此病，當(dāng)時(shí)正努力尋找應(yīng)對(duì)方法。他們參加了政府衛(wèi)生部門批準(zhǔn)的、為期四周的"長期新冠康復(fù)計(jì)劃"，進(jìn)行所謂增強(qiáng)耐力的階段療法和鍛煉。結(jié)果療程結(jié)束后數(shù)月，朋友狀態(tài)跌至谷底（注意這可是正規(guī)醫(yī)療項(xiàng)目，不是江湖騙子搞的）。他們花了一年多時(shí)間在家靜養(yǎng)、放棄熱愛的運(yùn)動(dòng)、學(xué)習(xí)自我護(hù)理，才勉強(qiáng)恢復(fù)到入院前的精力與疼痛水平。
真不敢相信這種害人研究方案能通過審核，導(dǎo)致眾多患者受害。真該把責(zé)任人告到傾家蕩產(chǎn)，讓他們親身體驗(yàn)自己加劇的病痛。

@carlycarly3
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!

萬分感謝制作這期內(nèi)容。我30歲患上肌痛性腦脊髓炎，曾經(jīng)是跑者、有體面工作、常參加音樂節(jié)。如今因重癥被禁錮家中近五年，多數(shù)時(shí)間臥床，無法工作甚至自己洗頭。從前能跑十公里，現(xiàn)在走十米都困難。這種病摧毀力太強(qiáng)了——我的病情惡化正是因?yàn)榇_診前強(qiáng)行堅(jiān)持鍛煉。
揭露PACE臨床試驗(yàn)丑聞也意義重大！

@FionaEm
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!

這是近年來最好的肌痛性腦脊髓炎科普。想補(bǔ)充的是：勞力后不適（PEM）不僅是癥狀，更是該病的定義性特征，會(huì)導(dǎo)致部分或全部癥狀顯著惡化并引發(fā)新癥狀。
有時(shí)PEM無法緩解，成為患者新的基準(zhǔn)狀態(tài)。這非常可怕，因?yàn)榛顒?dòng)能力進(jìn)一步萎縮，生活圈變得更小。
研究資金匱乏、缺乏公認(rèn)的病理檢測(cè)或療法、無治愈手段、平均康復(fù)率僅5%——幾代人的人生被摧毀。全球政府與醫(yī)療界必須正視這場(chǎng)災(zāi)難并采取行動(dòng)！

@Oakleaf012
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

我雖未正式確診，但表現(xiàn)出諸多肌痛性腦脊髓炎特征。每次醫(yī)療人員對(duì)我說"需要多鍛煉"，我要是能收一美元，早就能支付他們推薦的理療費(fèi)用了——即便我反復(fù)申明自己做不到。這種經(jīng)歷讓我陷入自我懷疑，覺得是否真的只是懶惰不夠努力。

@emilyefraser
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.”

十年前出現(xiàn)輕度癥狀時(shí)，我急需這類知識(shí)，卻選擇用長跑"強(qiáng)身健體"。備戰(zhàn)馬拉松的最后一次長跑17英里，最后1英里是爬回車?yán)锏?。這些年來身體機(jī)能持續(xù)衰退，我卻不斷突破新極限：不能跑就徒步跳舞，不能走就做理療。2020年疑似感染新冠后徹底喪失工作能力，過去五年多數(shù)時(shí)間臥床，連電視都看不進(jìn)去，人生全面崩塌。對(duì)于輕度患者，勞力后不適（PEM）可能難以識(shí)別，但回想起來我的兩大癥狀是運(yùn)動(dòng)后失眠和每兩周出現(xiàn)流感樣癥狀。傾聽其他患者的多樣化經(jīng)歷很重要——我從不會(huì)用"疲倦"或"嗜睡"來描述這種感受。

@charliespinoza1966
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!

天啊完全沒想到SciShow會(huì)報(bào)道我患病30年的疾病。感謝強(qiáng)調(diào)運(yùn)動(dòng)的危害性，以及合理控制活動(dòng)量避免觸發(fā)勞力后不適（PEM）的重要性！

@ValeaAlvida
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.

感謝。
想補(bǔ)充說明：重癥患者根本無法進(jìn)行演示報(bào)告等活動(dòng)。病情嚴(yán)重時(shí)連進(jìn)食都可能引發(fā)勞力后不適，甚至有人因此病去世。
盡管如此還是要說聲大大的"謝謝"，特別是對(duì)PEM的詳細(xì)解釋。

@joshuambean
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.

其他評(píng)論充分證明了這類視頻對(duì)患者的重要性。被看見、被聽見至關(guān)重要，而這期視頻完美做到了這點(diǎn)，因此要感謝你們！唯一想補(bǔ)充的是：這種疾病遠(yuǎn)不止疲勞和運(yùn)動(dòng)不耐受。去年我做了9個(gè)月詳細(xì)癥狀追蹤，記錄到55種不同癥狀間歇性出現(xiàn)。有些癥狀尤其嚴(yán)重并有致殘性，患者整體生活質(zhì)量極差。我每天臥床23小時(shí)以上，連過度思考或打電話都可能引發(fā)崩潰。我們需要更多治療研究，但感謝你們幫助提高這種影響眾多人群的疾病的認(rèn)知度。

@ProteaAurea
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.

視頻內(nèi)容極其準(zhǔn)確全面，制作精良，稍有不足的是疾病嚴(yán)重性在信息洪流中被淡化。比如提到80%患者無法工作（完全正確），但隨后說"提前休息能讓患者完成演講"，這在技術(shù)層面成立卻僅適用于1-2%最輕癥患者。
研究對(duì)比各類慢性病發(fā)現(xiàn)，肌痛性腦脊髓炎始終是致殘性最強(qiáng)的——比充血性心力衰竭、類風(fēng)濕性關(guān)節(jié)炎、多發(fā)性硬化等都嚴(yán)重（當(dāng)然這些疾病本身也很可怕）。視頻未能充分傳達(dá)這種摧毀人生的破壞力。

@jessieS8420
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.

感謝對(duì)肌痛性腦脊髓炎的正確解讀，我們中太多人不得不耗費(fèi)寶貴精力辨別海量的錯(cuò)誤信息?，F(xiàn)在認(rèn)識(shí)到了消耗超出身體的能量儲(chǔ)備同樣會(huì)造成傷害，再次感謝。

@benmmurray
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余年肌痛性腦脊髓炎患者在此致謝。感謝報(bào)道，特別是明確指出分級(jí)運(yùn)動(dòng)療法對(duì)我們的危害。醫(yī)療界普遍缺乏相關(guān)知識(shí)，導(dǎo)致患者就醫(yī)如同噩夢(mèng)。

@apotheosis21
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.

欣慰看到肌痛性腦脊髓炎終獲關(guān)注。摯友00年代末患病，多年未確診，之后又遭醫(yī)生錯(cuò)誤建議，直到近年科研稍有進(jìn)展才好轉(zhuǎn)。

@BionicMilkaholic
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.

難以想象肌痛性腦脊髓炎患者的處境。我本人長期嗜睡，需每晚睡9-10小時(shí)，白天仍需咖啡因提神。無數(shù)人告訴我"你困是因?yàn)樗?——是啊，睡6小時(shí)整天昏沉，睡10小時(shí)就精神煥發(fā)。
一年半前接受膝關(guān)節(jié)置換矯正術(shù)（30多歲），改善遠(yuǎn)超預(yù)期。原來膝關(guān)節(jié)錯(cuò)位消耗額外體能并引發(fā)炎癥，術(shù)后嗜睡減輕，健康狀況逐步提升。

@pidgeonfood
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

作為確診慢性疲勞數(shù)年的青少年，很少見到相關(guān)討論，因此看到最愛的節(jié)目報(bào)道實(shí)在欣喜！很高興告訴大家：經(jīng)過多年針對(duì)肌肉萎縮的理療，我已從臥床發(fā)展到住院治療，再進(jìn)步到使用輪椅，現(xiàn)在終于能拄拐行動(dòng)了！向所有慢性疲勞戰(zhàn)友送上愛心

@starlinguk
NICE in the UK already told the NHS that increasing exercise doesn't work 4 years ago.

英國國家健康與護(hù)理卓越研究院（NICE）四年前就已告知國民保健署：增加運(yùn)動(dòng)量對(duì)治療無效。

@jessicap4998
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.

若過度勉強(qiáng)自己，慢性疲勞綜合征就會(huì)爆發(fā)。隨后數(shù)日會(huì)像遭遇車禍般全身疼痛腫脹，任何止痛手段都無效。

@kuy3796
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，評(píng)論區(qū)里慢性疲勞患者們真心喜愛這期視頻，太棒了！
看到這么多人遭遇醫(yī)生否定病情、甚至因錯(cuò)誤建議加重病狀，實(shí)在心酸。但根據(jù)評(píng)論，這樣規(guī)模的頻道正確科普意義重大——單是標(biāo)題就讓無數(shù)人感到被認(rèn)同，實(shí)在太好了！
在Physics Girl的Diana患病前，我對(duì)這病一無所知，現(xiàn)在明白普及知識(shí)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

感謝提升公眾認(rèn)知！患病六年來，向人們解釋病情令人精疲力盡，特別是那些聽到"疲勞"就拒絕溝通的固執(zhí)醫(yī)生。
衷心祝愿評(píng)論區(qū)所有病友都能獲得比現(xiàn)在更好的健康生活。

@mystical_faery
from the ME/CFS community: thank you so much for this video.

來自肌痛性腦脊髓炎社群：衷心感謝這期視頻。

@Amybnuy
My doctor has been telling me to exercise over and over again and I’ve been telling her it makes me more exhausted….

我的醫(yī)生反復(fù)叮囑要多鍛煉，可我不斷解釋這只會(huì)讓我更疲憊…

@h?rjaren
A friend of mine has been living with ME/CFS for over a decade now.
Thank you for raising awareness!

摯友與肌痛性腦脊髓炎共處已超十年。
感謝提升公眾認(rèn)知！

@alysonmarie
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年確診慢性疲勞綜合征時(shí)，我未獲得任何支持體系或資料，只能自學(xué)"應(yīng)對(duì)"，并不斷被要求鍛煉、減肥、治療焦慮。我就知道SciShow制作視頻前會(huì)做足功課，感謝你們?cè)敱M解說——偶爾獲得認(rèn)同感實(shí)在美好。

@cartograp
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，這期視頻很棒，感謝幫助傳播這種毀滅性疾病的認(rèn)知。

@LaSpastica90
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. ?

幾年前看過相關(guān)紀(jì)錄片后徹底改變認(rèn)知。我曾開玩笑說自己有慢性疲勞，因?yàn)榭偸瞧＞搿，F(xiàn)在不再開這種玩笑——這一點(diǎn)都不好笑。我雖因睡眠差常感疲倦，但這與慢性疲勞綜合征天差地別。向所有患者致以誠摯關(guān)懷。

@JLUCAS43
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.

妻子患肌痛性腦脊髓炎15年。感謝這期視頻，期盼更多人了解這種可怕疾病，祈愿終有一天找到治愈方法。

@katscan18
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.

感謝制作這期視頻，看到標(biāo)題時(shí)熱淚盈眶，去年一月正式確診，但近四年來一直在苦苦尋找病因。我曾經(jīng)是越野跑者，如今只能用輪椅。

@paulaneilson5110
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

我是前急診科護(hù)士，受傷及多次上呼吸道感染后幾乎臥床，醫(yī)生診斷從病毒后疲勞到慢性疲勞綜合征，再到纖維肌痛癥，最后撒手不管。十年過去，雖比發(fā)病初期好轉(zhuǎn)，仍每日與疲憊、疼痛和腦霧作伴，無法重返職場(chǎng)，再加上關(guān)節(jié)過度活動(dòng)綜合征、絕經(jīng)期和疑似未確診的ADHD，真是"熱鬧非凡"呀（自嘲）！ 確實(shí)有種人生被偷走的感覺，糟透了，也特別心疼年輕病友們。

@dadduck69
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.

多年強(qiáng)行堅(jiān)持后，如今每天臥床22小時(shí)。需要如此長時(shí)間休息，才能勉強(qiáng)起身三次用微波爐熱飯。

@chanellecoppel
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.

看這個(gè)視頻時(shí)我哭了。我大學(xué)時(shí)因單核細(xì)胞增多癥患上ME/CFS，不得不輟學(xué)且再也沒能回去。這可怕的病折磨了我25年，確診卻花了9年。
看著研究逐漸進(jìn)步，終于有人關(guān)注我們，我真的很欣慰。
感謝SciShow！我關(guān)注你們多年，看到你們科學(xué)嚴(yán)謹(jǐn)?shù)爻尸F(xiàn)這個(gè)主題，再次證明你們的優(yōu)秀。

@AmyLHL
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.

我因慢性疲勞綜合征（CFS）臥床近三年了（現(xiàn)年31歲，19歲確診）。它摧毀了我生活的每時(shí)每刻，而醫(yī)生們卻束手無策。

@nevermnid
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.

作為ME/CFS患者20年的人——感謝你們。
我曾因強(qiáng)撐病前生活導(dǎo)致病情惡化，變得無法離家甚至半臥床，但人們?nèi)园盐耶?dāng)懶人，逼我做更多事，哪怕僅僅是吃完一頓飯就虛脫。
得知至今還有人被開分級(jí)運(yùn)動(dòng)療法（GET），實(shí)在令人心寒。

@ElliotEel
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.

謝謝你們讓我們感到被看見。
我25歲，與這病抗?fàn)?年。曾經(jīng)活躍能干，如今下床只為如廁或就醫(yī)?；藬?shù)年才讓醫(yī)生認(rèn)真對(duì)待、幫我申請(qǐng)輪椅，而去年底才實(shí)現(xiàn)。
因物理治療過度被送急診后，我現(xiàn)在連站立幾分鐘都做不到。

@rowdytomato859
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.

感謝報(bào)道！ME/CFS研究資金嚴(yán)重不足，且許多研究（如臭名昭著的PACE試驗(yàn)）存在嚴(yán)重缺陷。推動(dòng)更嚴(yán)謹(jǐn)?shù)纳镝t(yī)學(xué)研究才能真正幫助患者。

@TLDnoR
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，感謝持續(xù)關(guān)注這個(gè)議題！我病了十二年，失去學(xué)業(yè)和工作，能在此看到理解的聲音太棒了！

@Garden-of-Scarlett-Eden
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。曾經(jīng)規(guī)律做高強(qiáng)度間歇訓(xùn)練、學(xué)輪滑、讀博（表現(xiàn)優(yōu)異——導(dǎo)師們明確認(rèn)可）。如今五年過去，我仍在掙扎完成博士學(xué)業(yè)，被判定可能無法畢業(yè)，每周幾乎無進(jìn)展，連爬樓梯都做不到，在公寓走動(dòng)都可能倒下……我才三十出頭。這病徹底顛覆了我的生活——或許未來會(huì)有療法，但眼下我只希望人們能相信我們。

@shannonriley575
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.

感謝提高認(rèn)知——我十年未確診，因?yàn)檫B醫(yī)生都沒提過ME可能是癥狀惡化的原因。我反而強(qiáng)撐導(dǎo)致病情加重，多希望當(dāng)年就有這樣的視頻。

@MichaelNerman
Great video! As someone who has been diagnosed with me/cfs, I really appreciate the care that you took explaining it.

視頻很棒！作為ME/CFS確診者，感謝你們細(xì)致準(zhǔn)確的解釋。

@Armaaz
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.

感謝這則視頻。我與CFS抗?fàn)?5年，因聽從醫(yī)囑進(jìn)行分級(jí)運(yùn)動(dòng)療法（GET）和過度強(qiáng)撐，對(duì)自己造成巨大傷害。如今科學(xué)終于印證了我和眾多患者的經(jīng)歷：運(yùn)動(dòng)會(huì)惡化病情。
現(xiàn)在，我只希望我的醫(yī)生能去了解CFS——他對(duì)這病一無所知，這很可恥卻普遍。希望此類視頻能扭轉(zhuǎn)醫(yī)療界的認(rèn)知。太多醫(yī)生造成了無盡痛苦，面對(duì)事實(shí)卻無動(dòng)于衷。

@SaturnMoriya
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，幾十年后才確診。當(dāng)全世界都認(rèn)為你該"鍛煉克服"時(shí)，生活如同噩夢(mèng)。被迫放棄所愛，靠救濟(jì)金度日，困于家中甚至臥床，孤立無援，祈禱別再生病或福利被砍——誰會(huì)編造這種?。靠吹綑?quán)威媒體深入報(bào)道，真的鼓舞人心，或許我們的處境終將改善。

@Worldsawesomestguy
I think everyone with chronic fatigue knew this already hey at least people might believe us now..

我想所有慢性疲勞患者早已知曉這些，但至少現(xiàn)在人們或許會(huì)相信我們了。

@reachandler3655
Thank you, SciShow, for validating people's lived experiences.

SciShow，感謝你們驗(yàn)證了患者的真實(shí)經(jīng)歷。

@etuypit8714
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.

感謝制作這則科普視頻！！?許多ME/CFS患者不僅健康被毀，甚至因醫(yī)療機(jī)構(gòu)拒絕提供營養(yǎng)支持（當(dāng)他們虛弱到無法咀嚼時(shí)）而喪命。目前有個(gè)重病女孩被送精神病院而非醫(yī)院，只因醫(yī)生稱她"發(fā)瘋"，實(shí)則她需要醫(yī)療護(hù)理。類似遭遇已導(dǎo)致多名女性死亡，若現(xiàn)狀不改，悲劇將繼續(xù)。這一切只因醫(yī)生和政府無視患者的嚴(yán)重癥狀。

@irntsovaaodi
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，醫(yī)務(wù)人員顯然不理解它，令人沮喪。

@harp949
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.

跟其他評(píng)論一樣想說聲感謝！我曾強(qiáng)撐一年導(dǎo)致病情惡化，后來才明白"硬扛"有害。希望這視頻能幫助新患者避免重蹈覆轍。至今我仍在學(xué)習(xí)控制活動(dòng)量，這樣的提醒很有幫助。

@eastie216
I have had this for two years, triggered by mild COVID. If people understood what it was like, it would be their worst fear.

我因輕癥新冠觸發(fā)此病已兩年。若世人知道這病的真實(shí)模樣，定會(huì)視為最可怕的噩夢(mèng)。

@wildgardens
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.

這是對(duì)ME/CFS很好的科普，感謝提高對(duì)致殘性疾病的認(rèn)知！但需指出視頻描述的是輕度患者。重度ME/CFS截然不同——患者完全居家甚至臥床靠鼻飼，做演講的可能性堪比登月。對(duì)我們很多人而言，吃飯洗漱等基本活動(dòng)就能導(dǎo)致崩潰，生活只能平躺，連說話都是過度消耗。

@dragonfliesanddreams
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.

特別感謝揭露可恥的PACE試驗(yàn)！相關(guān)責(zé)任人該為造成的傷害被起訴。此類報(bào)道至關(guān)重要。

@immortal4942
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.

感謝提高認(rèn)知。CFS/ME毀了我的生活——疫情后婚禮剛結(jié)束就患病。曾經(jīng)滿懷理想，如今只能臥床苦等療法。

@CrankyOtter
Thanks for covering this. PEM is so debilitating.

感謝報(bào)道。運(yùn)動(dòng)后不適（PEM）的致殘性太強(qiáng)了。

@verlouria
If they listened to us sooner, they'd know this! Happy they're finally listening.

早聽患者的話早明白了！很高興他們終于開始傾聽。

@kuromiki3027
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.

萬分感謝報(bào)道這個(gè)主題！我高中時(shí)（新冠前）患ME/CFS，現(xiàn)二十出頭，病情逐漸惡化即將用電動(dòng)輪椅。包括親屬和父親在內(nèi)的人們完全不懂這病，總認(rèn)為我懶。反復(fù)解釋太耗精力，所以感謝你們做科普！以后直接轉(zhuǎn)發(fā)這視頻，能省點(diǎn)力氣。

@amara560
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.

感謝聚焦這個(gè)急需關(guān)注的話題！我患ME超十年，我們迫切需要公眾關(guān)注和研究資金。

@shannonwilliams8209
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.

感謝SciShow深入詳實(shí)的疾病描述。這病太折磨人——兩年半前患病，生活天翻地覆。曾是跑者、舞者、騎行徒步愛好者，參與各種社區(qū)活動(dòng)，如今繞街區(qū)走一圈都勉強(qiáng)。此視頻信息將提高人們的認(rèn)知，或許能推動(dòng)醫(yī)療界進(jìn)步。

@joanne8854
Good video with simple explanations for those who don’t know anything about MEcfs

視頻很棒，為不了解ME/CFS的人提供了淺顯解釋。

@user-dude-t8j
ME/CFS is worse than death. It is everyday torture. Millions of sufferers desperately need help.

ME/CFS比死亡更可怕，是日復(fù)一日的折磨。數(shù)百萬患者急需救助。

@bethanyfield6035
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.

感謝制作ME/CFS視頻！需更多研究并認(rèn)真對(duì)待患者。我家人患此病，NHS專家竟說是心理問題，荒謬至極！這病污名與謠言太多，感謝你們陳述事實(shí)。
原創(chuàng)翻譯：龍騰網(wǎng) http://m.top-shui.cn 轉(zhuǎn)載請(qǐng)注明出處

@liralen1116
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

真的非常感謝你們?yōu)槲覀儼l(fā)聲…這病急需更多公眾理解。光是看到視頻標(biāo)題我就想哭…醫(yī)學(xué)專家曾強(qiáng)迫我鍛煉，無視我的哀求。謝謝你們。

@stormseas
i have me/cfs and it is life ruining. thanks so much for talking about it

我患ME/CFS，人生被摧毀。感謝你們討論它。