Translating S4ME Fact Sheets into Mandarin Chinese

[geminiqry]

Hello everyone! I am a long time lurker of the forum, so I feel like I should contribute a little. Here is the draft of the first factsheet.


甚麼是ME/CFS？


重點

• ME/CFS (肌痛性腦脊髓炎/慢性疲勞症) 是一種對病人生活帶來莫大、且通常嚴重的影響的長期疾病。
• 大約250分之1的人群 (包括小童) 受影響。
• 病徵包括：身體不適、疲憊；難以維持直立或坐直狀態；痛症；以及思考或集中注意力的困難。
• 在體力活動或思維活動過後數小時或數日，病情會持續長時間的加劇。這被稱作 活動後不適 post-exertional malaise (PEM)。
• ME/CFS令病人難以工作、求學、保持社交。有些病人會因病不能離家、甚至不能離床。
• 該病目前成因不明，亦無任何有效療法。有陪分病人會隨時間自然康復，但也有病情惡化的。除了青少年和小童、以及在疾病早期的病人外，痊癒的人數不多。

病徵

在體力活動或思維活動後病情加劇是ME/CFS的關鍵症狀。患有ME/CFS的人能量有限，做了太多的活動會使他們的症狀變差。這現象可以在數小時或數日後發生，且需要一段長時間來恢復。休息或睡眠對此的緩解作用不大。這被稱作 活動後不適 post-exertional malaise (PEM)。

ME/CFS的疲憊與一般的疲勞或睡意不同。它是種具壓倒性的疲憊，足以令人無法過正常的生活。其他常見的症狀有：像感冒般的感覺、睡眠問題、腸胃問題、痛症，以及在思維、記憶、或注意力方面的困難。

很多患者對正常水平的音量、光亮度、氣味或觸覺不耐受；這些一切都可以使病人更加病。大部分患者會越長時間直立或坐直後，身體越來越不舒服。這被稱作 直立不耐症。很多人因此需要在大多數時間保持平躺、或腳腿抬起的姿勢。

ME/CFS病人看上去可能並沒有病容，但他們在很多方面都有嚴重的障礙。這個病令人難以，甚至不可能去工作、求學、保持社交活動、或做家務。有部分人會因病局部地或完全地不能離家。而ME/CFS最嚴重的患者會卧床不起，生活不能自理，會需要在如清潔、如厠或穿着上的幫助。因為他們很多不能耐受任何光線或聲音，他們需要躺臥在全黑、無聲的房間裏休息。其中一些還會有進食上的問題，罕見情況下需要導管餵飼。

誰會患上ME/CFS

在任何時期都會有大約250分之1的人受患。ME/CFS會影響小童及成人，包括老年人。所有社會階層以及族裔的人士均會受影響。

被確診ME/CFS的患者大約四分之三是女性。這個病在青春期之前比較少見。有些家庭有多過一位成員罹患ME/CFS，但研究人員目前尚未發現連繫此病的基因。

ME/CFS通常在例如傳染性單核白血球增多症或新冠病毒病等感染後發病。


診斷

ME/CFS的成因與病理機制在目前尚不明朗。現時並沒有可以用以確診的化驗測試。醫生會根據臨床表現作診斷，但這些症狀必需嚴重到影響日常生活，且持續數月或更長時間。醫生會為病人安排體檢和化驗，以排除那些症狀表現與ME/CFS相近的其他疾病。


治療

目前沒用任何可以根治或有效治療ME/CFS的療法。一般會針對單獨症狀處理，例如睡眠問題或痛症等。許多ME/CFS患者發現，調整活動節奏 (pacing)，將精力消耗控制在他們的能量範圍內，對於避免活動後不適有一定作用。

有一些以復健角度試圖治療ME/CFS的方法，會鼓勵患者隨時間逐漸增加活動量，其目的是希望可以幫助他們恢復正常活動水平。其中一種名為 分級運動療法 (graded exercise therapy) 的治療方式已被廣泛研究，但並未顯示有效。一些大型問卷調查表明，許多受訪患者在接受該療法後病情大幅惡化。目前沒有證據顯示該療法的其他變體，如 ‘graded activity’ 或 ‘pacing up’，是有效或安全的。有些醫學指南反對采用這類療法。

認知行為療法 (cognitive behavioural therapy) 旨在改變人的行為及思維模式。它有時被用於治療ME/CFS，但研究沒有表明這種方式對改善疾病本身有何用處。


病程及預後

ME/CFS可突然出現，亦可續漸發展。症狀的種類與嚴重程度通常會隨時間演變。

長期來說，有些人會轉好，有些維持現狀，也有些會惡化。除青少年、小童、以及病發早期的人外，完全康復的情況比較少有。對大多數患者來說，ME/CFS是個長期疾病。


參考文獻 (these are just the headers for the reference section)

病徵

誰會患上ME/CFS

診斷

治療

病程及預後

 

[geminiqry]

Edits: typos and some extra sentences.


There are some lines that are struck through.

但研究人員目前尚未發現連繫此病的基因。
but researchers have not yet found genes linked with the illness.

Well, in light of DecodeME, should we still include this line?

如 ‘graded activity’ 或 ‘pacing up’
such as 'graded activity' or 'pacing up'

I'm not sure if it is useful to include this examples here, because 'pacing' itself isn't even a thing in Chinese. Plus it is not exactly easy to translate these concepts into Chinese.



Now this one took me quite a bit of digging.

ME/CFS通常在例如傳染性單核白血球增多症或新冠病毒病等感染後發病。
ME/CFS often follows an infection such as glandular fever (also known as ‘mono’) or COVID-19.

Apparently, glandular fever or mononucleosis isn't a thing in China, or at least in where I'm from, Macau/Hong Kong, it is almost unheard of by most non-healthcare professionals.

I found a magazine interview with a paediatrics consultant at a prominent HK hospital. According to him, having practiced in both the US and HK, he rarely sees cases of mono in HK. His explanation was that, Chinese people, at least the older generations, have a practice where they would test out the temperature of the food with their mouths before feeding it back to their infants. I do have a faint memory of my grandma doing it for me. Not the most sanitary of practices I reckon! But as a result, most children are infected with EBV at a very young age.

I came across this that seems to align with what he said. From a publication on ResearchGate titled:
A Large-Scale Seroprevalence of Epstein-Barr Virus in Taiwan.
DOI:10.1371/journal.pone.0115836

The comparison of age-specific EBV seropositive rates among countries:



So I'm not sure if I should include this example here. Covid is of course, very well-known.

 

[Kitty]

Chinese people, at the the older generations, have a practice where they would test out the temperature of the food with their mouths before feeding it back to their infants...as a result, most children are infected with EBV at a very young age.

That's fascinating!

Not the most sanitary of practices I reckon!

Human species might well have fed their partly weaned infants mouth-to-mouth for a couple of million years, so I guess it can't be that bad. I'd never thought it as having potential benefits in building immunity, though.

I can't read even a single character of Mandarin Chinese, by the way, so I can't help with your translation!

 

[SNT Gatchaman]

but researchers have not yet found genes linked with the illness.

Well, in light of DecodeME, should we still include this line?

Maybe the fact sheet will be updated once DecodeME is peer-reviewed and published, but it could be argued to reference the preprint now given its strength?

Fascinating on mono/glandular fever being unknown. EBV-driven malignancy is common in China, especially nasopharyngeal carcinoma and gastric adenocarcinoma. There will be genetic and environmental explanations for this, though early life exposure to EBV may be a risk factor.

It's possible the window of EBV exposure in relation to immune development protects or favours development of different types of cancer through life: eg mucosal vs haematological malignancy.

 

[Kitty]

Fascinating on mono/glandular fever being unknown. EBV-driven malignancy is common in China, especially nasopharyngeal carcinoma and gastric adenocarcinoma. There will be genetic and environmental explanations for this, though early life exposure to EBV may be a risk factor.

I wondered if the pattern of ME/CFS—age of onset and incidence—might be different as a result. There'd be genetic differences between populations, but China's cities and Hong Kong would compare to many other industrialised parts of the world.

The epidemiology seems to be pretty rubbish in most places though, and China might be no different. It wouldn't be a straightforward exercise.

 

[Yann04]

I wondered if the pattern of ME/CFS—age of onset and incidence—might be different as a result.

To be honest I’ve never heard of Mono/EBV where I live. I don’t think it’s a “thing”.

Like obviously the disease exists but maybe similar to china nearly everyone has it early? To me the whole kissing virus you got in college which knocked you out for a couple months was something I only ever heard about in US TV Shows. Until I got ME.

But also I lived in chaotic generation that got lockdown in our late teens and COVID and all that so that might confound things here.

 

[Ravn]

Welcome @geminiqry

I don’t know how many people we have on the forum with Mandarin Chinese skills (I have zero) but I hope you find some people you can discuss any tricky bits with. It looks like you’ve hit that translator’s curse, the untranslatable term, where a word or concept used in the original text simply doesn’t have an equivalent in the target language or culture – always a big headache!

A few general approaches to consider if you haven’t already (just ideas, some may not be practicable in your specific situation)

It’s possible technical words for the likes of mono or pacing actually do exist but are very obscure and rarely used. To track them down you might need help from a professional medical translator or a specialist doctor or researcher. If you do manage to find a suitable term and choose to use it it’s good practice to add a short explanatory note for those unfamiliar with it

Apparently, glandular fever or mononucleosis isn't a thing in China, or at least in where I'm from, Macau/Hong Kong, it is almost unheard of by most non-healthcare professionals.

For mono, I agree, it’s certainly a valid option to leave it out as it’s only one example of possible infections and leaving it out doesn’t change the main message. Alternatively you may want to employ the explanatory note strategy

I'm not sure if it is useful to include this examples here, because 'pacing' itself isn't even a thing in Chinese. Plus it is not exactly easy to translate these concepts into Chinese.

Pacing, graded exercise etc on the other hand are key concepts and need to be kept in, somehow. I would start by checking through the rehab and related (e.g. your version of occupational therapy, assisting frail patients or similar) literature, or contact people in the field if that’s a possibility, to see if there are any sufficiently related concepts and terms that, together with an explanatory note, convey the ideas. Another area where useful terms may be found could be, ironically, in gym culture or sports medicine, again an explanatory note is very likely necessary

You could keep the English terms and add a note, e.g. ‘Pacing’ (similar to Mandarin ‘XYZ’ but with the difference that...)

Sometimes making up a new word, again with that explanatory note, can work if it’s intuitive enough. There may already be some informal terms being used within the patient community that could be adapted. The actual words used may be quite different to what we use in English but the general concept of adjusting your activities to your level of health/fitness as well as the concept of gradually building up fitness must surely exist in some form

I highly recommend doing what's called a back translation or reverse translation, at least for the difficult passages. The link below gives an overview of the technique and has some amusing examples of translations gone wrong (note that they’re trying to sell their services but it’s not absolutely necessary to use a professional, just someone very competent in both languages and cultures and who wasn’t involved in the original translation)

Back Translation Method Explained: What is Back Translation?

Back translation is the process of translating text back to the source language to check if the meaning of the translation is accurately conveyed.

australiantranslationservices.com.au

Well, in light of DecodeME, should we still include this line?

Technically the line is still correct, DecodeME identified some regions of interest but without confirming any specific genes as yet. But your question if it’s time for an update is a valid one

@Sasha @Trish (hopefully I’m tagging the right people, I can’t remember who led which fact sheet project)

General side note: Back translation would also provide a way for the authors of the original fact sheets and for the S4ME committee to check translations in languages they don’t speak themselves, if they wish to do so

 

[geminiqry]

Pacing, graded exercise etc on the other hand are key concepts and need to be kept in, somehow.

Thank you for your detailed feedback. On this particular point, worry not! I did translate ‘pacing’ into something like ‘regulate activity rhythm/pace’ in Chinese.

That crossed out bit was about variants of GET like ‘pacing up’, which is an insidious way to repackage GET as proper pacing. But since the concept of pacing itself isn’t well-known in Chinese, that section can become redundant.
On top of that, due to how the language works, people here just wouldn’t assume whatever translation of ‘pacing up’ I came up with to be a natural corollary of pacing, if that makes sense.

For me, the hardest phrase to translate was actually PEM. As you know, ME/CFS is so poorly recognised even in the West, let alone China. It felt as if I am coining a new term for it in Chinese, and that sounded like a lot of responsibility! Plus unlike translating between other European languages, where you could just sort of “cheat” by transliterating Latin/Greek based terms, you have to start from scratch for languages in other families.

For Japanese and Korean, this strategy of transliteration could sometimes work, but Chinese not so much. It is notoriously resistant to loanwords due to how its characters work, so I have to do a proper semantic translation. I ended up with 活動後不適, literally meaning ‘activity afterwards malaise’. 不適 is usually translated as ‘discomfort’, but it is the go-to word for ‘malaise’ in a medical context. 活動 ‘activity’ can refer to both physical and mental activity in Chinese.

 

[Wyva]

About mono/glandular fever: it is the same in Hungary. I never heard of it until I got mono myself in my early thirties (leading to my ME/CFS). I don't remember any high school/college kids I knew who had it. Whenever I tell my story, I need to explain to people what mono is, they don't know. People here really have no idea unless they had it themselves. Doctors of course know about it. I had a couple of American expat friends, they also knew about it, some had it themselves. But the locals don't really.

I also find it interesting when I read comments here on S4ME about how it is widely known that mono/glandular fever can take months to recover from because of the post-viral symptoms. It is like everyone is aware of that. No one is here, people have no idea. There is very little awareness even about acute mono. I also suspect cultural reasons behind this, little kids getting infected with EBV at a younger age, when it is not such a big deal, so mono in your teens and later is rare.

 

[Wits_End]

I might be able to put out some feelers and see if I can find someone with the necessary Mandarin skills ...