Disease names in different countries: CFS, ME, ME/CFS, other?

[shiso]

I am curious about what names are being used in countries other than the US for the disease, for example, UK, Canada, Norway, Denmark, Sweden, France, Germany, Spain, Italy, Czech Republic, Australia, New Zealand, India, China, Korea, Brazil, Argentina, any other countries.

If you know, can you please respond with:
(1) the "official" name (used for diagnosis, by government agencies, for obtaining public disability benefits) for the country
(2) any other names currently being used by local medical experts, patient organizations (and any brief explanatory comments)
(3) By what name is the illness known among the general public (if it is known)

Examples:

US:
(1) chronic fatigue syndrome (CFS)
(2) ME, ME/CFS, CFS/ME (each relatively common among experts and advocacy organizations)
(3) chronic fatigue syndrome

Japan:
(1) mansei hirou shoukougun (Japanese literal translation of "chronic fatigue syndrome")
(2) CFS (common), ME (much less common)
(3) same as (1); largely unknown among general public and even most doctors

I am aware of international efforts like the ICC and ESME advocating the international use of the ME name and improved, uniform disease definition that such international efforts will hopefully lead the way, but for now am curious about the current existing name status in different countries. Thanks!

 

[Nielk]

The truth is that I'm very disappointed how little weight the ICC seems to have on the community. When it first came out, i was so excited that we finally have an international concensus that could be uniformly be used in all countries. all studies done in different counries would be using the same criteria etc...(just a dream)

 

[Purple]

If you know, can you please respond with:
(1) the "official" name (used for diagnosis, by government agencies, for obtaining public disability benefits) for the country
(2) any other names currently being used by local medical experts, patient organizations (and any brief explanatory comments)

May I suggest:
(3) By what name is the illness known among the general public (if it is known!)

 

[shiso]

May I suggest:
(3) By what name is the illness known among the general public (if it is known!)

Thanks for the suggestion Purple, I have added it to my original post.

Nielk I agree (with both the disappointment and the dream).

 

[Snow Leopard]

mansei hirou shoukougun

Literal translations are always curious. What does it mean to the culture in question? What does it mean when back-translated by a native speaker?

 

[shiso]

Literal translations are always curious. What does it mean to the culture in question? What does it mean when back-translated by a native speaker?

With Japanese, mansei (chronic) is a common word, as is hirou (fatigue) and the word for syndrome, and japan being the overworked society that it is (a lot of people think they are burned out and tired all the time), mansei hirou (chronic fatigue) pretty much gives a nearly identical impression that "chronic fatigue" does in US culture.

 

[Valentijn]

The Netherlands:

The abbreviation "ME" (pronounced like the letters "M.A." in English) seems pretty well known as a serious disease by random people such as co-workers, integration agents, and even doctors. It's the abbrieviation for "Myalgische Encefalomyelitis", which might not be as well known.

"Chronischevermoeidheidssyndroom" or "chronische vermoeidheidssyndroom" (abbreviated CVS, pronounced "Say Fay S") is also used and recognized, though I don't know if it's commonly known to be the same as ME, or taken as seriously by the public. It literally means "Chronic Fatigue Syndrome", though "fatigue" has the same root as "tired" in Dutch. The abbreviation doesn't seem as well known as the full name or "ME".

 

[Guido den Broeder]

It varies.

According to the Dutch government, ME does not exist, or is a name that got replaced; there is only CFS with an unknown, but probably psychiatric or behavourial cause. The ME/CVS Stichting (ME/CFS Foundation) is paid by the goverment to say the same and to pose as a patient organization, which it is not. Most media apply self-censorship and echo what the government says. News that does not fit into that view is usually ignored.

The treatment of choice, according to the Dutch government, is CBT/GET. They believe that it cures everyone completely and immediately. If you drop out, you were not motivated to get well, and will not get help regardless of need.

We, the ME Vereniging (ME Association), are a patient organization and recognize ME as a postviral disorder of the brain, i.e. the actual ICD-10 classification, and consider CFS a poorly defined dustbin.

Most physicians in the Netherlands know nothing about ME, CFS, nor even that there may be an issue with these names. The general public is a lot better informed than the average doctor and often do know about the issues, more or less.

 

[Guido den Broeder]

In Japan, by the way, ME is known as 'natural killer cell deficiency syndrome'. But nowadays journal articles are usually on CFS.

China have a medical journal in English, and there they write CFS. In Australia and New Zealand, it's usually ME, although New Zealand also know it as Tapanui Flu (like Akureyri disease in Iceland) and Australia have research into 'prolonged fatigue'.

In Scotland, ME and CFS are officially considered different entities.

In Norway, ME is gaining ground over 'kronisk utmattelsessyndrom' (chronic exhaustion syndrome), but ME tends to stand for myalgic encephalopathy, rather than -itis.

India have only just discovered the disease.

In Spain, CFS and Fibromyalgia are often combined. Except for Catalonia, which is way ahead of the rest of the country and in fact most of Europe, it's all about 'unexplained fatigue'.

France are still in 19th century neurasthenia times.
Germany mostly think that ME is an odd name for burnout.

 

[Snow Leopard]

In Australia it is still CFS unfortunately. (or post-viral fatigue I guess)

 

[biophile]

According to an article quoting Wessely:

He continues: Like it or not, CFS is not simply an illness, but a cultural phenomenon and metaphor for our times.

A metaphor that does not apparently translate into non-English speaking countries. ME is virtually unknown in France, Italy and Spain. Only a small number of doctors will make this diagnosis. So most doctors will not call it this. They will call it neurasthenia, they might call it depression, they might call it stress. Now, that might be that they are blind, or it might be that the patients are too poor to seek healthcare. You see, its very difficult to know. But it certainly didnt strike a chord with them in a way that it does over here. When we gave them descriptions of our typical clinical cases here in Britain, they didnt recognise them. They said, Nah, we havent seen that.

Does that mean that there are parts of the world where ME does not exist? Well it does exist but its not labelled. In many countries its just not labelled as chronic fatigue syndrome . . . Certainly we know that in Italy we do know only a small number of doctors will make this diagnosis.

What ME categorically is not, says Professor Wessely, is what you and I get on a bad day.

http://www.meassociation.org.uk/?p=7552

This is supposed to demonstrate that CFS is a metaphor? It shows how ignorant and incompetent and outdated the health care systems are in these countries when it comes to ME and CFS.

 

[Abha]

Hi Guido,
Re India a surgeon(Indian)that I now told me that ME/CFS doesn't exist in India.I doubt that but then it could be like MS in South africa which is not found in the local African population.His wife is a retired(?)psychiatrist and my feeling is that they believe that ME doesn't exist.The poor there rarely see doctors and the richer people who have illnesses that are not known about locally probably travel abroad(if able to do so).Others of course will turn to ayurvedic medicine.I think I read somewhere recently that an ME Group was being set up in India.

 

[Dolphin]

I don't live in France and haven't been there since I was diagnosed, but have read the term "spasmophile" has been used there. Not sure if the usage has decreased in the last 10 years or not.

 

[anniekim]

A Swiss friend sent my dad an article in Swiss German a few years back about m.e. The newspaper article referred to it as chronische Ershoepfung Syndrome. I think the literal translation would be chronic exhaustion syndrome. My German is a bit rusty!

 

[Uno]

There are quite a few ME'ers in Cape Town actually, I think we are spawning over there! The doctors there just class it as Fibromyalgia, they see ME and Fibro as one and the same and patients are generally referred to Arthritis clinics. There is lots of good rehab over there too. There are lots of forms of integrated medicine in South Africa so it's easier to get treatment than in the UK. In Japan it is known as "low NK cell disease".