Poland

I’ve been talking to Mira who lives near to Warsaw about what it’s like to have ME in Poland; Mira has had ME for over 25 years.

• How did you become ill?

I got sick 25 years ago, when someone shot me in the eye with a BB gun on a safe street in the afternoon in lower Manhattan. I had 8 months of outpatient therapy to keep the eye stable and help it heal. I developed a white covering over my lens, really scar tissue, and one 1/4 of my iris was destroyed. This had to be all fixed during a four hour long surgery during which I nearly died from the drugs administered. After all of this my immune system was terribly weakened and I developed ME. 

• How were you diagnosed and how has the illness affected you?

It took 7 years before I got a diagnosis of ME, because I went from doctor to doctor and no one could tell me what was wrong. This is all in NYC and the nearby counties.  I was told by a cardiologist to try exercise therapy, so I started to swim, at first just a little and then I worked myself up to one hour a day. I could not keep this up for very long because I had a huge relapse. I was so weak that I could not sit up in a chair, I would have to hold up my head when I finally when to see an ME specialist. 

My body is capable of physical effort and I am by nature very energetic, but I get sick from being too active physically. Right now I can do about 10% of what a normal person my age can do every day. 

• Are there any Poland based ME charities, associations or support groups?

Not that I can find I’m afraid.

• Are there any doctors who might be interested in hearing about breakthroughs and research into ME?

Yes, there are such doctors but they are not in a group and disappointingly, some hold the view that exercise therapy is a possible cure.

• Do you have any idea (rough guess) as to how many people in Poland suffer with the illness? 

I think that the number is average. There are no statistics kept, based on the rest of Europe, a possible estimate could be as many as 150,000.

• How do Doctors and the government perceive ME in Poland?

In Poland, the illness is largely perceived as being in the mind and not a biomedical condition.

• How difficult is it to get a diagnosis?

ME does not have a diagnostic code. I think that one or two places in Poland give diagnosis, but since there is no code the diagnosis is not legal and one cannot get a pension for it

• What is the current prescribed treatment for patients?

The prescribed treatment is for exercise therapy just like in the UK which mostly makes people physically worse.

• Does Poland have any ME specialist centres/clinics for diagnosis and treatment of ME?

Yes, there is one center in Bydgoszcz where ME is diagnosed, but they then tell people to exercise

• Are the medical/government establishments funding biomedical research into ME?  Are they interested in efforts to cure CFS/ME?

Yes, in Bydgoszcz but the only research being conducted is to test people before and after physical effort.

• Are patients protected by the state/given benefits etc for not working?

Since the illness does not exist there are no benefits available to sufferers here.

• Are ME patients/doctors aware of the ongoing Rituximab Trial in Norway?  And the fight for the retraction of the UK PACE Trial?

There is some awareness of the Rituximab trial and the retraction of the UK Pace trial but it means little over here unfortunately.

• What would you like to see changed about treatments currently offered in Poland?

I would like the Ministry of Health finally see that ME is a real disease and do proper biomedical research to try and help us.

• What is the outlook for patients in Poland?  Are there reasons to feel positive, what can be done?

Right now, patients have to take care of themselves. There is nothing positive going on now, because the only center that does research on ME and CFS recommends the PACE treatment!  I am attempting to travel to Brussels to seek better treatment due to the situation here in Poland.
 
Update:  Together with my friend Juli, we have created Poland's first online ME community:  
​https://www.facebook.com/groups/258771904515221/?ref=bookmarks

Aug 2016