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CFS Internationally

Discussion in 'Skeleton, Skin, Muscles, Hair, Teeth, and Nails' started by spindrift, May 18, 2010.

  1. spindrift

    spindrift Plays With Voodoo Dollies

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    While trying to promote the www.sockit2mecfs.org project internationally I realized
    how little I know about the situation in foreign countries. Since most of our members
    are from the USA, UK or Canada the situation in these countries are often discussed
    here.

    Now I would like to know what the CFS situation in other countries is. Please post
    here and tell us what it is like to have CFS in other countries. Doctors, diagnosis, health
    insurance and recognition of the illness would be interesting to know.

    When you zoom in on Western Europe in the international CFS map it looks like it is non-
    existent in France which I find very unlikely since all the surrounding countries have it.

    http://xmrv.me.uk/me-cfs-global-map.php

    It just makes me wonder what is going on there. I am sure they all have computers
    and many can speak english, yet no one put themselves on the map.
  2. awol

    awol *****

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    actually francophones are often shockingly terrible in english on principle. Many believe their language has as much of a right to be the universal language as english and resent the growing dominance of english.

    That said, the problem is also that it is impossible to get an actual ME/CFS diagnosis in Switzerland at least and probably France also. No doctor will put the label on it here, so very few people know enough about their own condition to look for this forum. Language is not the only barrier.

    In Switzerland, there is no such thing as ME or CFS, just "chronic fatigue" which is classified as somatoform. No disability insurance is possible. No extensive testing (viruses, NK function, tilt tests...) is done, only basic. Treatment is psych, which at least insurance companies are obliged to cover.
  3. shiso

    shiso Senior Member

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    In the country I am currently living in, which I would rather not name due to personal circumstances and Internet search engines (hint: it is in Asia and is about to be surpassed as the world's number two economy by another Asian country), the situation is pretty bad.

    Recognition by the medical establishment is close to zero; the vast majority of doctors assume it is some type of psychiatric condition; in fact, the MDs who tend to have at least heard about CFS are psychiatrists. Public awareness is also close to zero.

    Waiting lists for real doctors who have even heard of the disease are interminably long. Once one is fortunate enough to get diagnosed and see one of these rare birds, one is met with advice for CBT and GET based on the UK "evidenced-based" (in their words) model. No extensive testing is performed unless skillfully requested. Doctors are not straight with patients about the prospects of recovery. They tell you most people get better and that it's critical to stay positive.

    To say treatment is conservative would be an understatement. One standard protocol exists for all patients who are diagnosed with "CFS" that consists of high-dose vitamins and a TCM mixture that is used in a wide variety of ailments. The only customizing that is done is for sleep medication, if needed, and antidepressants (which are often suggested despite the absence of depression).

    I have not heard of any doctor experimenting with anti-virals like Dr. Peterson or addressing gut issues per Cheney and others. Ampligen is not being considered (although I read somewhere that a pharmaceutical company was exploring its application in another disease, perhaps it was avian flu), nor is any other drug that seems to be offered on an experimental basis in US and Europe (e.g. immune modulators, LDN, stem cells).

    The cult of MD worship in this country is entrenched. Patients do not question doctors' expertise or advice or knowledge, period, and when questions (e.g. that ME/CFS is not a psychiatric condition or the dangers of GET) are raised even in the most calm, matter of fact and very polite manner (very rarely, I suspect from the reactions I have gotten from doctors), it is politely - or not so politely - ignored. Reactions to the spectacle of a young female patient standing up for herself have ranged from amusement to outright abuse.

    When I asked about XMRV testing at my last doctor's appointment, my doctor (who is actually a decent guy who is knowledgeable about the disease) said, flippantly, that it was probably a fluke (that was the end of that conversation topic), making a side comment about the questionable quality of the researchers involved in the study (don't shoot the messenger, please).

    The impression I got from a recent (rare) news article on CFS was that government disability benefits were not readily available to ME/CFS patients. With respect to health insurance, this country offers universal public health insurance so everyone has access to medical treatment; moreover, medical costs are a fraction of what they are in the States. But this isn't so relevant for CFS patients who "only" have CFS anyway, because the treatment - CBT/GET and vitamins - do not cost much, with or without insurance. It is up to the patient if she wants to try to see specialists for co-morbid conditions (though such specialists will not have heard of ME/CFS).

    There are no equivalents of a CAA or a WPI or a CFSAC. There are no online forums like this one (there are some isolated blogs that reflect the lack of resources for information for patients).

    This, in the country that shall not be mentioned by name in association with my username (thanks), which has the second (or third) largest economy in the world. :(
    peggy-sue likes this.
  4. spindrift

    spindrift Plays With Voodoo Dollies

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    Calling the Whole World

    Awol and Shiso thank you for your stories.

    This is so unbelievable and probably not known by most others on this forum. I am so glad I started this thread and hope others speak out about what is going on in their countries.
    We all have been keeping an eye on the situations in the US, Canada and the UK and somewhere along the way the rest of the world got lost.

    Please everyone let us know what the situation in your country is. I hope this will become a thread
    that unites ME/CFS patients from all over the world.
    alex3619 likes this.
  5. Athene

    Athene Never give up

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    Italy
    I put out a bit of info about Italy on another thread.

    CFS doesn't officially exist here. In Italy, to use free public health care services, you need a diagnosis with a code number: then you get free tests and prescriptions. CFS doesn't have a code number, it doesn't exist, and therefore you have to pay for anything.
    Most Italian doctors will write you a prescription to get a test for anyting you want - you're paying for it so why not? You can choose which hospital to do it in, which doctor you want etc - but it's all at your own expense.

    The law here does not permit nutritional supplements to be sold at anything above a bare minumum dosage. They are hard to find. To get the dosage of CoQ10 that I am taking daily I would have to buy a box of 30 tablets and take all 30 every day, for example. So I order everything online. If they pass this law in the UK (which is on the agenda) and the US then I see my only other option as suicide. I am not being flippant about this. When your health falls below a certain threshold, chronically, it is not worth bothering any more.

    Public knowledge of CFs is absolutely zero.
    There is a support group website that has excellent information and regularly translates news, such as XMRV research, from the Internet.
    There are 4 doctors in Italy listed on this website who do research and treat CFS patients. As far as I know, at least 2 of them are oncologists.

    The doctors I have met have not greeted the illness with any scepticism at all. They treat it as a physical illness and no medical professional has ever suggested to me that they think it could be psychological. Psychology is treated with great scepticism where I live, in Sicily. Most Sicilians who "believe in psychology" feel a great need to justify themselves/try to argue that psychological illnesses really do exist. The generl population usually thinks that anyone who claims to have a psychological problem obviously doesn't go to church often enough.

    In terms of treatment, I see my doctor in Belgium and then my GP here prescribes whatever that consultant has advised. My GP is fantastic and gives al lthe support he can but he says every time I see him that I am the expert in this illness and he is the student! I don't know what experience someone would have who does not have a diagnosis and does not maange to find out what they have.
  6. Andrew

    Andrew Senior Member

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    Los Angeles, USA
  7. filfla4

    filfla4 Senior Member

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    Hi, I come from Malta....for those of you saying Where? What? That's a tiny island about 16 miles long and 8 miles wide, situated in the middle of the Mediterranean, 60 miles south of Sicily!! We're an ex-British colony, an independent country since 1964 and one of the member states of the European Union. If you look at the CFS map...I'm there! I live in Balzan!! :)

    I'm pretty new to the forum and have only made a handful of posts. I've had ME/CFS for 18years which typically started off as glandular fever....I only got diagnosed because I had a friendly GP who was young, and rather concerned about me. His diagnosis consisted of posting a photocopy of an article in GQ about cfs through my door! I surmised it was from him and told him as much next time he came to visit me.....he used to turn up at my door unannounced....late in the evening....and sit and have a drink with my partner (now my husband of 16 years!).

    We have a fledgling support group here in Malta which is run by a very courageous sufferer, who against all odds has managed to create some public awareness about the condition through newspaper articles and interviews. She's even created a website http://www.mesufferersmalta.org/ but I know that she hasn't been well at all of late. We also have an email support network where we share information we come across but we've never actually met up.

    Malta has an excellent health care system with top notch doctors of international repute in several specialisations. However CFS is largely ignored in officialdom. There are no incapacity benefits for cfs patients, no dedicated clinics, no doctors that specialise in this condition - we're too small for that! I have only survived because my understanding GP from the outset referred me to a physician who had trained in the UK and was aware of the condition. There too I have seen this physician's attitude change considerably over the years and it was only last summer (17 yrs into the condition) that in a referral note he wrote when sending me to another specialist, did he actually write 'suffering from M.E.'!! That's the first written acknowledgement I've had!!

    When the initial xmrv research was published last October, I cold-called some official person in the Ministry of Health ... we had an exchange of a few emails and perhaps 3 subsequent telephone conversations. He was extremely interested due to the threat to the national blood supply and he assured me he would be taking this further ... however I've heard nothing more, read nothing more and simply don't have the energy to lobby since I juggle a lot more in my life.

    I could go on.........
    alex3619 likes this.
  8. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    NYC (& RI)
    Wessely said in a journal- I think it was his BMJ podcast about a couple of months ago- that they don't have 'CFS' in france; they have 'spasmophilia' and that in another country (i think Sweden) they have low blood pressure. Seriously, this is what he said.

    Psychiatrists like him promote the idea of 'culturally bounded illnesses'- disorders that only exist in certain cultures. Presumably Wessely thinks, or tries to get others to think, that the french culture makes people love spasms ('spasmophilia'). Don't know whether to laugh or cry, so I'll laugh. :Retro smile:
    peggy-sue likes this.
  9. jewel

    jewel Senior Member

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    Aaah... it is interesting, yet disheartening to see how different countries and cultures fail us in their varying conceptualizations and approaches. Thank you to all for sharing your experiences. J. (from CA, USA)
  10. spindrift

    spindrift Plays With Voodoo Dollies

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    Wow, thanks everyone for your wonderful input. I hope we hear from more countries.
    It is a real eyeopener to see what is going on in different countries.

    Thanks Justin, it would totally make sense, that in countries where CFS symptoms are
    diagnosed with different wordings like spasmophilia that people probably do not realize
    that we have the same illness. It is also sad because then they are missing out on a lot
    of internet support groups where they might find help.

    And then there are the countries where most people don't have access to internet, computers
    and maybe not even doctors. Lets not forget them.
  11. Dolphin

    Dolphin Senior Member

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  12. spindrift

    spindrift Plays With Voodoo Dollies

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    Wow those are great links. I hope some people can find the help they might need there, at the very least I can use them to promote the sock project once I get over this flu.

    Still would love to here more from people in other countries.
  13. MNC

    MNC Senior Member

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    :D

    Bella Italia.

    Basically the same here in Spain on everything you said.
  14. Here in New Zealand we have a mixed bag as far as GP's are concerned as to what they think it is but it has been recognised by the Social welfare system and extra help for sufferers is available, especially if you have a good case manager. We are lucky in that we have had a national body with a part-time paid co-ordinator, ANZMES, for 30 years and had a lot of publicity way back in the 80's regarding an outbreak called Tapanui Flu which meant that many did see it as a physical illness. We also have a GP who has done a lot of work on our behalf and is now lecturing at the medical school to all students on ME/CFS so the new graduates will be more knowledgeable. Generally we look to the UK for our information but with Wessely and co we are in close contact with the US experts and have had some come out and go on a national tour of lectures to patients and Dr's. We have 36 support groups around the country, some only just holding voluntary meetings but also have 5 groups who have part-time support workers. They are paid by local charities.
    Most sufferers are not well catered for as they are on their own with a GP who doesn't understand but we do have a consulting GP who attends all the international conferences and is on the Internationaal board, and a visit to her is subsidised by the welfare system if you are on a benefit. ANZMES produces a magazine 4 times a year with all the latest research in it, hints etc.
    Most of us are still sick though! Looking forward to hearing about the latest on XMRV from the May conference in UK.
  15. V99

    V99 *****

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    Could anyone tell me where in the World the Canadian criteria is used to diagnose patients. Is it actually used in Canada?
  16. V99

    V99 *****

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    UK
  17. Marco

    Marco Old blackguard

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    Near Cognac, France
    Just to add to this I've been spoon feeding my French GP with information on ME/CFS including the WPI research and a copy (in French) of the summary Canadian Consensus Document. From my initial meeting where he stated that in France they don't believe in ME/CFS (as I've recounted many times) he now finds it all "very interesting" and was quite happy to state on a UK government form that "all my symptoms are consistent with a diagnosis of Myalgic Encephalitis/CFS.

    I also let him know that if he found it all "very interesting" that there was plenty more information to come.;)

    One small step!
  18. Athene

    Athene Never give up

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    Well done Marco!
    I'm planning a similar kind of education programme for my own doctor here in Sicily. It's encouraging to hear it can work...
  19. awol

    awol *****

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    V99,

    The Canadian Consensus Criteria is used in Canada and in the US by doctors who actually understand the condition. However very few do, and the CCC are rarely taught in medical schools. So your answer would be that no, CCC not used across the board as a standard in Canada or anywhere else, but is used, by some, in many many places.
  20. V99

    V99 *****

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    Thanks awol.
    Hopefully Scotland will be the first. However, I do understand that separating ME from CFS may not be the best thing.

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