SLOVAKIA
It's estimated that there are approximately 20,000 people with ME living in Slovakia (in line with other European ratios).
I spoke to Michal from Bratislava about M.E in Slovakia, here's what he told me....
How did you get ill and how were you diagnosed?
I got sudden onset after a bronchitis but it could be possibly also mononucleosis which I overcame that time but I didn't know about.
I was diagnosed 5 years later after many examinations. One rheumatologist said that it could be possibly ME/CFS. Later I was also diagnosed by Kenny de Meirleir in Belgium.
How does this disease affect you?
It affects all aspects of my life. It depends on my current level of disability because I went through different disability levels since having this disease. Luckily now I have better periods but it affects me still a lot. But for the moment I enjoy my life as best I can.
What's the hardest part about having ME?
I feel that I am losing time. I was always very active but now I have to rest a lot without doing anything and it doesn't make sense for me. The worst thing is the never-ending exhaustion.
What is your doctor’s perception/understanding of ME/CFS?
It depends on the doctor. I think there are more and more doctors who believe that ME/CFS is a real biomedical disease and not psychosomatic. Many patients have different experiences - you have to be lucky with your doctor. Personally, apart from my GP who doesnt believe in ME/CFS, I was lucky and found good doctors (an immunologist, cardiologist and neurologist). They always try to help me, I am not sure how sure they feel about ME/CFS but they believe my problems. Unluckily they are not ME/CFS specialists so they don't know too much about this disease.
What treatment is currently prescribed to those suffering?
It's mostly symptological treatment.
Are there any specialist clinics for ME/CFS patients?
There aren't any clinics or doctors specialised in ME/CFS so the patients care cannot be adequately treated. This is the biggest problem I think.
Do patients receive adequate financial support?
We can get social disability for this disease (currently ME/CFS is under the cathegorie - immunological diseases) but it's only rarely. There are only a few patients who get social disability for this disease during the last few years. So there is mostly no financial support for ME/CFS patients.
What changes would you like to see to the treatments currently proposed?
I went through different treatments and I think nothing has really helped me. With the current options it's mostly symptological treatment but it doesnt help you too much. We already know what helps you - pacing, staying within your energetical limits, staying within lower heart beating (less than 110 beats/minute), personalized diet (which varies from patient to patient), healthy lifestyle.
I think to get better treatment the researchers and doctors have to understand better this disease.
What does the future look like for ME/CFS patients? Is there any reason to be positive?
I had a meeting with one authority from ministery of health and I was surprised how much he knew about ME/CFS - he followed the latest ME/CFS research. But there are so many health care problems in Slovakia and we are so weak group that we are not a priority for this moment. He understood all the problems but he told me that they cannot force the doctors to adopt ME/CFS. So we have to try to find different ways to win doctors attention - we need to find a doctor/clinic who would specialised on ME/CFS. Without specialists you cannot have adequate healthcare.
But I see there's a small reason to be optimistic. The ME/CFS situation is slowly changing in important countries like the USA. There is more research, more doctors and researchers taking ME/CFS seriously, there is more money for research (but still not enough to make significant progress) so the situation is changing slowly. And in this global world it will arrive slowly also in Slovakia. But there has to be progress in the world so that's why it's important to make a strong international ME/CFS community.
If you live in Slovakia and would like to talk to others with ME then you can find support at: www.facebook.com/groups/661691970549488/
March 2019
I spoke to Michal from Bratislava about M.E in Slovakia, here's what he told me....
How did you get ill and how were you diagnosed?
I got sudden onset after a bronchitis but it could be possibly also mononucleosis which I overcame that time but I didn't know about.
I was diagnosed 5 years later after many examinations. One rheumatologist said that it could be possibly ME/CFS. Later I was also diagnosed by Kenny de Meirleir in Belgium.
How does this disease affect you?
It affects all aspects of my life. It depends on my current level of disability because I went through different disability levels since having this disease. Luckily now I have better periods but it affects me still a lot. But for the moment I enjoy my life as best I can.
What's the hardest part about having ME?
I feel that I am losing time. I was always very active but now I have to rest a lot without doing anything and it doesn't make sense for me. The worst thing is the never-ending exhaustion.
What is your doctor’s perception/understanding of ME/CFS?
It depends on the doctor. I think there are more and more doctors who believe that ME/CFS is a real biomedical disease and not psychosomatic. Many patients have different experiences - you have to be lucky with your doctor. Personally, apart from my GP who doesnt believe in ME/CFS, I was lucky and found good doctors (an immunologist, cardiologist and neurologist). They always try to help me, I am not sure how sure they feel about ME/CFS but they believe my problems. Unluckily they are not ME/CFS specialists so they don't know too much about this disease.
What treatment is currently prescribed to those suffering?
It's mostly symptological treatment.
Are there any specialist clinics for ME/CFS patients?
There aren't any clinics or doctors specialised in ME/CFS so the patients care cannot be adequately treated. This is the biggest problem I think.
Do patients receive adequate financial support?
We can get social disability for this disease (currently ME/CFS is under the cathegorie - immunological diseases) but it's only rarely. There are only a few patients who get social disability for this disease during the last few years. So there is mostly no financial support for ME/CFS patients.
What changes would you like to see to the treatments currently proposed?
I went through different treatments and I think nothing has really helped me. With the current options it's mostly symptological treatment but it doesnt help you too much. We already know what helps you - pacing, staying within your energetical limits, staying within lower heart beating (less than 110 beats/minute), personalized diet (which varies from patient to patient), healthy lifestyle.
I think to get better treatment the researchers and doctors have to understand better this disease.
What does the future look like for ME/CFS patients? Is there any reason to be positive?
I had a meeting with one authority from ministery of health and I was surprised how much he knew about ME/CFS - he followed the latest ME/CFS research. But there are so many health care problems in Slovakia and we are so weak group that we are not a priority for this moment. He understood all the problems but he told me that they cannot force the doctors to adopt ME/CFS. So we have to try to find different ways to win doctors attention - we need to find a doctor/clinic who would specialised on ME/CFS. Without specialists you cannot have adequate healthcare.
But I see there's a small reason to be optimistic. The ME/CFS situation is slowly changing in important countries like the USA. There is more research, more doctors and researchers taking ME/CFS seriously, there is more money for research (but still not enough to make significant progress) so the situation is changing slowly. And in this global world it will arrive slowly also in Slovakia. But there has to be progress in the world so that's why it's important to make a strong international ME/CFS community.
If you live in Slovakia and would like to talk to others with ME then you can find support at: www.facebook.com/groups/661691970549488/
March 2019