HUNGARY

I interviewed Ágnes Szarvas from Hungary about her struggle with M.E and the situation there.  

• How did you get ill?

I got ill about 5 years ago after getting infected by the Epstein-Barr virus, which causes glandular fever/mono. Basically, what happened is that although the active infection was over after three weeks, I have never recovered. Before this I was a very athletic person who could do 1000-calorie workouts without a problem and someone who almost never got ill. 

• How does this disease affect you?

Unfortunately, I've never had a totally symptom-free day since. My condition fluctuates between mild and moderate, which affects every part of my life, since I can never really plan, I cannot reliably work and even doing simple daily chores can be a real struggle. I have a long list of symptoms, but just to name a few: I suffer from brain fog, extremely debilitating fatigue, balance issues, swollen lymph nodes, hypersomnia with unrefreshing sleep, terrible headaches, breathing difficulties, thermoregulation problems, a seemingly very overreactive, trigger-happy immune system and so on, and so forth.

• Do you know of any support groups or associations in Hungary for those suffering from ME/CFS? If so what are their aims?

Actually there wasn't any, not even a simple internet forum for them before I started a Facebook group a few months ago (https://www.facebook.com/groups/446987496274141/). But due to the lack of any previous platforms, it is very difficult to find these people: everyone was pretty much alone with the disease and now they have to find the group one by one. It's a slow process but absolutely worth it. I actually pay for Facebook advertisements sometimes to find the patients through them. I also started a Facebook page with the latest news on ME/CFS (https://www.facebook.com/kronikusfaradtsagszindroma) since this information would be absolutely unavailable to them in Hungarian otherwise.

• Are there doctors who would be interested in the research into ME/CFS and the recent scientific advances?

Unfortunately, right now we don't even have doctors in Hungary who know enough about the disease to begin with. Maybe long covid and the connection between the two will raise more interest here too but currently we are way behind even in this. 

• How do doctors and government officials perceive ME/CFS in Hungary?

I think most of them just don't. It is almost like it doesn't really exist. Most doctors have some very vague and not particularly accurate knowledge and even the bit more knowledgeable ones don't know enough and tend to give bad or inadequate medical advice. I have never heard of any medical professional here who knew about PEM and the importance of pacing. I think ME/CFS wasn't taught in detail at medical universities until now. Now they teach the biopsychosocial approach, which I actually complained about in a letter to them and the author and lecturer promised to update the teaching material to reflect current scientific attitudes more accurately. We'll see if that happens.

• Do patients receive adequate support? Can they receive disability benefits when they are unable to work?

I heard that some severe, bedbound patients managed to get some benefits (but not specifically because of ME/CFS), but only a ridiculously small amount, maybe enough to cover your food expenses but not much more. Others told me they are very lucky that they have someone to take care of them because otherwise they would probably be somewhere out in the streets, homeless, possibly dead. And this makes me wonder how many people we don't know about may have ended up like that.

• What changes would you like to see to the treatments currently proposed in Hungary?

Well, since currently nothing's actually happening and we are basically quite invisible to healthcare, and there is a lack of treatment options, I would like to see some doctors taking interest in the disease. This might happen actually: my GP, seeing my struggles even to get a diagnosis, offered to maybe set up a specialist clinic. This may not happen because he may not find a medical professional interested enough for the project but in any case, I'll try my best to explain the situation to him and that simply finding someone is not enough, that person will have to really seriously educate themselves on this and the biopsychosocial approach is unacceptable, not just according to us, patients, but also according to the current and currently rewritten guidelines in other countries (CDC in the US, NICE in the UK).
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• What does the future look like for ME/CFS patients in Hungary? Is there reason to be positive?

Apart from this, I think 90% of the change will come from abroad. There are countries who have made a lot more progress in the recognition of the disease and I believe a domino effect might happen that will reach us too eventually, even if it takes much longer than elsewhere. The research into long covid and the current shift in the US and the UK make me hopeful that all of this will affect us too eventually.

June 2021