British Mike Harley is running marathons in all countries of the European Union, to raise funds for Invest in ME Research. He already raised an astonishing amount of £50,306, but is continuing to run marathons in other European countries.
You can still support him and Invest in ME Research here.
In all countries he interviews local ME-patients. On the occasion of the marathon of Belgrade on April 28, Mike reported:
“Ahead of my trip to Serbia to run Belgrade Marathon, I spoke to Milan and Diana about life with ME in the country.”
Milan:
I got sick at the end of 2020 after contracting the EBV virus in January 2020.
ME/CFS is difficult to diagnose because many diseases must be ruled out, such as multiple sclerosis, lupus, cancer, and various other autoimmune diseases. It took me 3 years to get diagnosed with ME/CFS. The disease has a very bad effect on me, I am in stage 3 of the disease and along the way I have fibromyalgia and POTS syndrome and I cannot work.
The problem in Serbia is that many doctors have not been educated about our disease, and as a result, they do not recognize it and wander around doctors for years. Patients in Serbia have their own SHUKS association with the president, Ina Ignjatovic from Cupria, who fights for all of us and our rights. As part of the association, there is also psychotherapy as a support and facebook group and viber group to share our experiences and problems together. For now, it is still not possible to get a disability pension or any kind of social assistance due to our illness in Serbia, we hope that this will be resolved.
As for changes, I would like the state to notice us better, to help us, provide any kind of help and, of course, as many doctors as possible to educate us about our disease, so that patients would not wander around doctors for years while their disease progressed day by day.
The future of us sufferers is bright, in my opinion, and there is reason to be as positive as we have an association that fights for us, as well as Dr. Professor Branislav Milovanovic, who is the only doctor in Serbia who deals with me/cfs.
All of us who are ill are connected by the desire to get better and we all want to be healthy again and be able to work, contribute to ourselves, our family and the society in which we live.
Diana:
My story begins 17 years ago when I got Coxsackie virus from which I never recovered. My symptoms were extreme fatigue, fever, muscle and joints pain, digestive problems, and 17 years later I’m still living with the same problems, but now getting even worse sometimes.
I went from doctor to doctor for years. Everyone was mostly confused, usually pointing me to other specialists. I have received various diagnosis, therapies and always in the end, when they didn’t know what was wrong, they would refer me to a psychiatrist.
This disease changed everything in my life. I am grateful to God that I had children because they gave me strength to fight all these years. When you have this kind of illness no one understands you or sees you as sick, so sooner or later people lose friends and usually only associate with people who are in the same situation.
Today there is much more information about ME/CFS than there was 17 years ago when it all started for me. In Serbia unfortunately ME/CFS is still not seen as a disease, but only a temporary condition. The situation is slowly changing, because there is one doctor who deals with us in Belgrade and younger generations know more about ME/CFS. Patients in Serbia with a diagnosis of ME/CFS cannot receive more than 15 days of sick leave, unless there is a more “serious” accompanying illness, cardiovascular, neurological or endocrinological condition. With a diagnosis of ME/CFS they wont be able to get a longer absence from work.
I believe that everyone who suffers from ME/CFS in Serbia would like to see more understanding from the health system itself and the possibility of sick leave. And regarding our future, I hope for the best. Today, due to people suffering with long-Covid, we are no longer so invisible and I hope that younger generations who are graduating medical schools will help to find a cure or a way to help and faster diagnose disease in early stage. Especially in children and younger people, until the consequences occur.
Source: Mike’s European Marathons
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