Edit: Countries that are included in this thread in alphabetical order: Albania, Bosnia and Herzegovina, Bulgaria, Croatia, Cyprus, Greece, Kosovo, Moldova, Montenegro, North Macedonia, Romania, Serbia, Slovenia I used the broadest definition of SEE here but there are overlaps with other regions and some of these are more cultural, not so much geographical groupings, so I'm open to changing the list of the countries belonging to this group if someone feels it is not appropriate. --- There is a sizeable ethnic Hungarian minority in Serbia too who have their own news sites in Hungarian, so I can read them - I get the Google alert notifications from those too. (And the same is true for Romania and Slovakia too - the latter is of course not in SEE.) So far I've got nothing on ME/CFS at all but even long covid is something that extremely rarely gets an article, at least in the Hungarian language media of these countries. Of course I can't really get the whole picture through this lens but at least we can get some snippets. These are the two items about long covid from Serbia I've seen this year. From January: A post-covid counseling program is being launched in pharmacies across Serbia Google translate from Hungarian: The other one is from today and is actually a very short news item I saw in Hungarian media today (so this is not from the minority media): Post-Covid surgeries have opened in Serbia Google translate from Hungarian: So it looks like to me that they were quite slow to deal with long covid and also mostly see it as primarily consisting of noticeable organ damage and mental health issues like depression. (The latter part is the same in Hungary and Slovakia too.)
http://www.europeanmealliance.org/index.shtml Linking EMEA (the European ME Alliance) here. They currently have pages with contact details for Croatia: ME Association in Croatia Serbia: Association of People with Chronic Fatigue Syndrome in Serbia Slovenia: Zebra Patients' Association
Linking the EMEA News thread: there's a webinar coming up focused on improving things in the Eastern European part of the world.
I saw this today on the Slovenian ME/CFS, fibro etc Facebook page. They will talk about the diseases on a regional radio station for ME/CFS Awareness Day. Google translate:
Here is the full programme of the upcoming webinar "ME/CFS and post Covid in the Balkans" organized by EMEA:
Article from Serbia. Politika seems to be one of the major news sites in the country. Chronic fatigue as a consequence of corona Not everything is factually correct in the article but the president of the country's ME/CFS association is one of the people talking about ME/CFS. Google translate:
Sounds interesting. Thanks for keeping us informed about the ME/CFS situation in eastern European countries @Wyva. Much appreciated.
This article was posted on Facebook by the Serbian ME/CFS association. An interview with prof Branislav Milanovic about the disease: Google translate: What is chronic fatigue syndrome and why it cannot be cured by rest
It was going pretty well until the treatment section. How he reconciles this sort of cure and improvement rate (which look very very much like the natural incidence and effect of ME/CFS): with the special multidisciplinary treatments that only Prof Milovanovic offers, I don't know. But two months to two years of treatments sounds very expensive.
Posted today on Facebook by the Serbian ME/CFS page I follow (translated by Google): This was all, but I guess we'll probably find out more soon. (Don't ask me what "crisis of consciousness" exactly is. FB, Google Translate and ChatGPT all translated it the same way.)
An interview with Dr. Vesna Ikonić Marinković, a pediatrician from Serbia, who has recently started suffering from ME/CFS, probably after a covid infection. Google translated version: CAN'T SLEEP, DO YOU FEEL CONSTANTLY TIRED? Doctor Vesna reveals that it is a serious DISEASE
From the interview with Dr Marinković: Even while acknowledging the lack of information, there is the offering of advice. I think we all do it, but I guess for many doctors it comes naturally. I thought it was interesting that this person noted having multiple serious infections while not having a raised CRP. So, the absence of an suitably increased CRP during an infection could perhaps be part of the disease? Googling that, a lack of a proportionate CRP during an infection, it is noted that this can occur in people with rheumatoid arthritis and lupus, but it isn't known why.
From the Facebook page of the Serbian ME/CFS patient org (Facebook translation): Ladies and gentlemen, We can proudly announce that our first basic goal has been met. On our initiative with the patronage of the Ministry of Health, and with the invaluable support of the organizer of the first International symposium that will be held on November 17, 2023. year. with the theme ,,Post covid syndrome and chronic fatigue syndrome'' is the National Institute of Cardiovascular Diseases ,,Dedinje'' -Professor Dr. Milovan Bojić -Professor dr Branislav Milovanovic-Professor dr Nebojsa Tasic More details in the attachment: The details are in some posters shared, so hard for me to use Google Translate or similar. But anyway, there seems to be indeed some government involvement too, for example the Serbian Minister of Health is among the speakers.
Member @Mike Harley will be in Serbia soon raising funds for ME/CFS Research. Here's a pre-marathon interview with a person with ME/CFS in Serbia: Mike's EU Marathons
Saw this on Facebook from the Croatian ME/CFS/Fibromyalgia/Dysautonomia patient org. Facebook translation (I guess ME/SKU is ME/CFS?): "Dear all, We invite you to the meeting and congress of Slovenian, Serbian and Croatian societies for ME/SKU, which will be held on the 14th. September in Postojna, Slovenia. The venue is Hotel Krast, starting at 11 o'clock. The congress will be discussed: - about current findings about diseases, possible new research and connections to other diseases, - about some possible methods of treatment and therapies. - about the problems patients encounter and how to successfully solve them and - about experiences and good practices of patient support societies. Prof. will also participate in the congress. dr. Branislav Milovanović, as well as Dr. Timon Zupan who graduated from ME/SKU. The event will also be an opportunity for a relaxed exchange of experiences and opinions of the members of society from Slovenia, Croatia and Serbia. Due to easier event planning and limited number of vacancies, let us know you are coming or apply on email: clanstvo@drustvobolnikovzebra.si We look forward to seeing you here! We are at your disposal for any questions. Sincerely, Sanda Spac"
Merged thread News from Greece The Canary: 3D room scans show the harrowing reality of life with severe ME, trapped in a neglectful household 6 September 2024 By Hannah Sharland "A former architecture student living with severe myalgic encephalomyelitis (ME/CFS) has created a series of 3D room scans to show what life with the devastating disease is like. From the small world that is her bedroom, 26-year-old Katiana has produced the series of images to illustrate how Greece’s dire lack of services for people with her chronic illness is trapping her in an increasingly dangerous situation. Unconscionably, this is that Katiana’s abusive parents are putting the life of their daughter at enormous risk. Most alarming of all, if things don’t change – and fast – Katiana is scared she’s going to die." --- "However, Katiana’s home environment is no safer. Using her architecture skills, Katiana has generated 3D scans of the bedroom in which she ekes out the daily realities of life with severe ME/CFS and her other devastating conditions:"
That’s really awful for Katiana. I hope she can move out of home and improve soon. People don’t seem to want to know about infection control or allergy dangers. But there are some problems with the doctor saying she will deteriorate permanently or die without treatment, meaning surgery on her spine, seems really contemptible to claim this about her future prospects when it’s so vanishingly unlikely that he could predict her fate in this way and will definitely be payed a lot of money to operate on her.
Mike's pre-marathon interview with Vasilije of Montenegro: Mike's EU Marathons Basically, no patient organisations, no useful understanding of ME/CFS among doctors, no eligibility for social welfare.
