How is ME-CFS treated abroad (Europe, Japan, South Africa, Far East, Russia etc.) ?

cigana

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Hi,

I hope there are some foreign (non-native-English speakers) reading this who will be able to comment on how ME/CFS is perceived and treated in their country.

Also, we often hear that in Japan they treat the condition differently - does anybody know any more about this?

Thanks,

Mark
 

pamb

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Hi Mark,

FRANCE

I'm English speaking but living in France with my ME/CFS husband since 2004. In a word, treatment here is for 'somatoform illness'. Psychosomatic in English. John saw 6 neurologists here, in Toulouse, Bordeaux, Paris and Perigueux, and none had a clue - even when asked directly if this might somehow be related to CFS.

John has received no diagnostics or specific treatment since 2005 and his sympathetic GP just tried again to find a neurologist somewhere with some interest. No luck.

Next step is to spend the money for Lyme diagnosis from the US and then try to get permission to go to Belgium for some treatment with some support from French healthcare as we've run out of money. I don't hold out much hope for that though as the issue is still somatoform and that surely requires no further diagnosis or treatment of symptoms or otherwise.
 

cigana

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Thankyou pamb, I hope you have some luck. Sounds like France is part of the Evil Empire too.
 
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Well the Evil-Empire is the only place that can cure it!! You're not going to get better treatment from Albania of Bulgaria as they are stuck in the Dark Ages when it comes to healthcare - but we are the ones who are supposed to b responsible for this sort of thing, figuring out what is wrong with people with this illness, and that is where it is all going wrong.
 

filfla4

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Hi Mark,

MALTA

I am Maltese and yes, here too we are suffering recognition. I have had ME/CFS for eighteen years, follow a bad bout of glandular fever. My "diagnosis" came in the form of a magazine article slipped through my door by an understanding GP, who felt he could not give me a formal diagnosis. He referred me to a physician who was also understanding but could only treat the individual symptoms and never the cause.

Malta is a former British colony and prides itself on having an excellent health care system. The majority of our doctors do their postgraduate training in the UK. We are none the wiser and I have suffered humiliation in all sorts of forms, including an orthopaedic surgeon who blatantly told me that the condition did not exist.

Unfortunately our news sources are also British-inspired and the media here reflect the view dominant in the UK. Together with fellow sufferers, we have formed an email support group and we have been quite active in the last few months in getting coverage for the recent XMRV research, with some success. This coverage also prompted the local blood bank to issue a statement to the media regarding blood donation and ME/CFS sufferers. However we still have a very long way to go to change public perception and more importantly recognition from the medical profession.

I have personally started seeing Prof De Meirleir in Brussels and I have my second appointment with him this week, when I should get my results and hopefully his treatment protocol.

Best
filfla4
 

cigana

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Hi filfla, thanks for your reply. What an appalling way to get a diagnosis. Please let us know if you have any more success with XMRV and the media, it could be useful to know how. Best of luck with Prof DM!
 

filfla4

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Please let us know if you have any more success with XMRV and the media, it could be useful to know how.
Well, basically we have young sufferer who is very seriously ill, and she deserves all the credit. She single-handedly set up a website (http://www.mesufferersmalta.org) and started doing some pr by having some feature-style articles written in lifestyle magazines. She was also instrumental in getting a poster together which I am pleased to say is also the visual used on the ME Association (UK) website as a cover for the "if only" youtube video.

I got involved last summer, just as the Lo/Alter paper was being published and the story was hitting mainstream press, mostly in the U.S. I contacted a journalist friend of mine who is known for covering controversial stories. However he writes for a newspaper that is not very high in circulation. He picked up on the story and wrote a couple of pieces which we then posted all over facebook - it's easy to do that once you have something in print, even if the hardcopy is not high in circulation. At the same time I started calling (and calling, and calling) the editor of the highest circulation daily newspaper. Eventually, he assigned a journalist to the story who is a doctor herself and she started reading up on it. We gave her lots of feedback and the right pointers and finally we got coverage in the mainstream newspaper. This story got a lot of attention and it prompted the bloodbank to issue a statement!!

Needless to say, there has been little else since, although we know that we have a lifestyle article coming out shortly. We work at it but it's easier to get coverage when there's a big story breaking internationally. I am hoping that there will be some major breakthroughs in 2011, which we will then work at getting coverage for. I think it's worth lying low at this point, so that we don't over-work the story.