ROMANIA

Based upon other European ratios, there are as many as 80,000 people living in Romania with M.E.  I spoke to the sister of Andreea from Iași who told me about her battle with M.E.

• How did Andreea get ill?

We really don't know that because the onset of the disease was when she was a student and it was very progressive. At that moment we saw a lot of doctors - none of them had any idea about ME/CFS. they always suggested she was depressed. She wasn't tested for viral infectious or anything else. She didn't have fever or something viral in her youth.

• Has it been difficult for her to get diagnosed?

It took like more then 10 years. She wasn't diagnosed in Romania- she saw here lots of doctors - none of them thought about ME - only depression. She even had treatment for depression without any result. She moved with her husband in Sweden where it took 6 years to get her diagnosed. They had the same problems there - no one believed her.. until I wrote a letter to her doctor describing ME. After that he sent her to ME clinic in Stockholm - Bragee Clinic where it took another six months to be diagnosed.

• How does this disease affect her?

Extremely severely - she is bedridden, isolated, in complete darkness, and silence, with trouble eating.

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

We haven't found any association. If one exists then they're not on the internet. If you find out something about such an association please let me know- we are desperate at the moment, seeking help.

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

We saw four neurologists up until now- all professors in different cities in Romania, one cardiologist, an infectious specialist etc - none of them do anything for ME, just saying they haven't heard of ME and they don't believe in it. The government have nothing to say to us, we are just ignored. 

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

There is no adequate support for us.  They cannot receive benefits with this diagnosis, you have to have something else. At least this is our story.

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

Well there is no adequate treatment - we were told just to continue the treatment we received in Sweden. Other doctors we saw were very skeptical about our treatment.  I would like to see more open minded doctors - not just to tell us I never heard about that so you better go somewhere else.  Also I would like there to be a clinic for complex diseases where we could go for an advice.  Most importantly I would like if there would actually be some sort of treatment.

• What does the future look like for ME/CFS patients in Romania? Is there reason to be positive?

At the moment I cannot be positive at all - she is too sick, is without treatment and just left alone by the state.


Sept 2019