SLOVENIA
I talked to a number of patients within the only Slovenia ME/FM facebook group (500 members) about their experiences living with ME & FM in Slovenia, here's what they told me.....
How do doctors in Slovenia perceive ME?
In the United Kingdom, many doctors think that disease is not real. Is it the same in Slovenia?
Is there any social assistance / disability pension for patients in Slovenia?
Do you know of scientific studies such as rituximab (Norway), Ron Davis (open medicine foundation), etc?
What changes would you like to see for patients in Slovenia? Do you have hope for a better future?
How do doctors in Slovenia perceive ME?
- Some are professional but others are very unprofessional. The result seems to remain the same, we mostly are left to look after ourselves.
- It really depends on where you live and what Doctor you have.
- The official diagnosis is given, but very few patients receive adequate treatment. Treatment is classic with anti-depressants and various relaxants. But I repeat that few have received therapy because there is a lack of proper diagnosis.
- They treat us poorly... too much chemical medicine, too little physiotherapists, lack of awareness and misunderstanding, maybe there's something to do about it -hopefully.
- Most patients can't get diagnosed. Its a slim chance. Its not done on purpose however its just the lack of experience that doctors here have. On the other hand people do expect too much from a diagnosis. Even if they get a diagnosis they dont get any treatment. If they get treatment well we know how that is. For many not very helpful. Its a never ending circle. Many people are angry and sad and mostly frustrated here due to the fact they can't even get it recognized.
- As far as I know many doctors are not very well informed about this disease yet, so many patients are just shoved around, or they cheer you up and calm you down with antidepressants or painkillers. Painkillers don't really work, only for a moment, and my doctor told me that the other [medication] is not like painkillers, which they do not like to prescribe, and that only in Soča (Slovenia) they will give me more guidance and confirmation.
In the United Kingdom, many doctors think that disease is not real. Is it the same in Slovenia?
- I have lived in the United Kingdom for a decade and everything about fm has been well explained by a specialist in connective tissue disease. Much better than here in Slovenia. In the UK you have at least a chance to get to the bottom of it, because even though three quarters of the people are wrongly diagnosed, at least they get it sooner than later. Over here we don't have any of that unfortunately. The level of education here is low because we are a small country and most doctors only learn from literature. They are ignorant in many areas. Especially when it comes to rare diseases and modern diseases. There are no specialists. The rest of them are not up to speed. The mentality of doctors is at zero. Very little respect for patients. In the UK, it's more neatly arranged. GP general doctors have open channels and at least they send a patient forward. But it's hard to achieve here.
- It's almost the same, in fact, they don't support us too much around this disease, like we're nothing. We are not noticed even though we are very tired and we are hurting. We are invisibly ill, like a house that has a nice facade, but you can’t see that inside it has a fallen staircase and a broken sink. On the outside, the house is beautiful, but on the inside it’s a different story. How could anyone know that on the inside the house is falling apart?
- Slowly but really slowly some are starting to understand...But when someone has a disease like ours they can get tired of fighting the pain and everything around it. It throws them in despair and you end up like this.. but these are extreme cases, it could be much better. Health care doesn't do much for us.
Is there any social assistance / disability pension for patients in Slovenia?
- There's no help... no services, no disability... some painkillers and suffering... Waiting and waiting.
- We're not very organized in this area. Individual doctors are trying. My doctor has another patient with this diagnosis and I have to say, when I tell her something she quickly writes it down and is involved on many ends . In general, at the level of the disability commission, I have just received information that they are changing things for the better. But right now who knows how long we will be treated like second-class patients . We all just want to to return our old life and, above all, be healthy.
Do you know of scientific studies such as rituximab (Norway), Ron Davis (open medicine foundation), etc?
- We don't know anything about it, please tell us.
What changes would you like to see for patients in Slovenia? Do you have hope for a better future?
- Who doesn't have desire for a better future... of course, we should have more access to physiotherapeutic services and some hot springs, and we should be allowed to do this through healthcare every year, not paying everything yourself, massages and the rest ... Health care practitioners should understand us and be aware of the severity of this disease, because it is not only in our minds, but we have serious pains, fatigue, brainfog, gastrointestinal problems and, last but not least, medication hasn't solved anything in the long run, but they have only strengthened the dysfunction of other organs. If at least some of it changes, it will be quite a lot and, of course, that over here too they would understand that we are too exhausted to be able to work like healthy people.
- Of course, hope is indispensable. Without it, it's only worse. We have already given up on many doctors, so we do not go much to them unless we have to because we are unable to work.
- The most specialized centre for rehabilitation or therapy for fibromyalgia is only in Soča in Slovenia and unfortunately there are too few doctors and other staff and, unfortunately, there is too little money for this disease. They are sorry that they cannot help patients more quickly and better, since they have the first rehabilitation terms for 2019 and beyond, and so far they have already been very busy. It is also possible to get involved in some seminars. The first physiotherapies start at the end of November and then further instructions will follow, etc.