LITHUANIA

I spoke to Aleksas from Lithuania about his experience of living with ME and what life is like for patients there....

• How did you get ill?

I got ill very unexpectedly, because I was always healthy and strong. It was in November 2011. In the beginning I thought it was just the flu or something and would pass through soon, but I was wrong.

I had a very high fever when it started, and terrible headaches. After a few days the fever dropped away but I felt very weak and still sick. I spent 2 weeks in bed unable to sleep normally. Blood test results were good; doctors told me that it was just some kind of strange flu. They told me that I would be fine, but I wasn’t improving. Now after six years I have recovered a little bit and feel better, but still live with fatigue and other symptoms including a ringing in my ears, low grade fever, brain fog, sleep problems, joints and muscle pain.

• How does this ME/CFS affect you?

This illness affects me so much.  It has destroyed my dreams to have my own family, good job and normal life. I am 70% housebound (my case is not the worst). Sometimes I feel better, sometimes really bad. All the time I have to push myself to do everyday things. I become more antisocial. l lost some friends. Relationships with people become annoying sometimes because it’s hard to see happy people, when you are sick all the time and it’s invisible. You don’t know what to tell them, when they ask you: ''what’s wrong?", "are you sad?" Many people don’t understand, they think I am depressed or just pretending.

• Have you been diagnosed?

After lots of medical procedures (mrt, echoscopy, many different blood tests which was good) I was told by one doctor that I was sick with ME/CFS. He told me there is no cure and treatment. I read people stories on the internet that are sick with ME/CFS and many of them symptoms were just like mine. I’m still not sure however.

• How difficult is it to get a diagnosis of ME/CFS?

It’s very hard to be diagnosed. First you have to go through all the different procedures. If all the results are good, then it’s ‘probably’ ME/CFS.

• Do you know of any support groups or associations in Lithuania for those suffering from ME/CFS? What are their aims?

No, I don’t know of any support groups in Lithuania. I only saw a few forums on the internet where people were discussing chronic fatigue syndrome.

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

I don’t know of any.

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

Some doctors want to get rid of you as quick as possible, because your results are good. They think you are pretending or something. Some doctors are nice and try to help you. I don’t think the government care, because this illness is invisible and there is not enough proof that it’s real.

• What treatment is currently prescribed to those with ME/CFS?

The only treatment you get is nutrition supplements and psychotherapy. Both help a little, but not enough to recover completely.

• Are there any specialist clinics for ME/CFS patients in Lithuania?

No, I’ve never heard of any.

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

I think it’s impossible because there’s no proof that you’re sick.  Personally I’ve never asked for any disability support, because I know there is nothing to expect.

• Are patients and doctors aware of the Rituximab trial, which is currently taking place in Norway?

I am not really sure. Maybe some patients know something about the Rituximab trial, but I doubt it as its treatment isn’t available yet in Lithuania. I really hope it will be reachable soon for everyone who suffers from ME/CFS. I’ve heard that it can be very effective.

• And what about the controversy surrounding the PACE Trial in the UK?

I’m not aware of this.

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

I want to think that the future is bright because there are some positive things happening internationally in ME/CFS research. There is a hope for all who suffer.

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

I just want to see more understanding from doctors and people; that’s all. This illness is real and it takes lives away.

Aug 2017