People with ME/CFS in Finland need your help.
Please sign their petition!
Editor’s note: Click here to read the Finnish translation of this article.
Twelve years ago a boy was born, my youngest. A happy, delightful child, always making others laugh and enthusiastically participating in everything. He liked the school as well as sports and playing with friends. Life was such a fun adventure.
All that changed suddenly. He did not recover from a flu back to normal. Pain came in and remained. The pain, so severe that he loses consciousness several times during a day. Constant nausea makes it hard for him to eat. Sports is now but a memory: even walking gets impossible when his legs lose all their strength and his vision becomes blurred the same time. He can’t read or write any more. Sounds appear intense, even unbearable. Watching TV and sometimes even a conversation is just too much for him.
“The pain won’t go away even when you think you can’t take it anymore.”
The boy longed to be at school, and so he was taken there to lie on the classroom couch for a short while at a time. The cost of that was lacking energy and having even more pain for several days. It felt unreasonable. It was easier to regulate exertion at home. Besides, no child wants to cry in front of mates. The teacher makes now brief visits at home every now and then.
His life has narrowed down to our living room couch for years now. He can’t do things that he used to love any more. The days are long and the doings are brief. The pain won’t go away even when you think you can’t take it anymore. Nausea and pain wake him up at nights.
“I had to leave my job to become a caregiver for my little boy. How come it was my child that got an illness, which nobody seemed to know anything about?”
For the first couple of years he had faith and hope. Mom and dad would know what to do, and the doctors would know how to help. Now the hope is almost gone. Doctors can’t help after all. Only few of them have said anything positive to grab on to.
I had to leave my job to become a caregiver for my little boy. I never thought I’d live to see that. How come it was my child that got an illness, which nobody seemed to know anything about? How come there wasn’t even a way to treat his pain away?
“It was not enough, that they shifted the whole responsibility of caring to the parents, they even implied at first, that our child’s illness was our fault.”
What has shocked me the most, is the way university hospitals have treated my son and his fellow-sufferers. Nobody seems to be interested, even though my son is practically bedbound. Not one doctor has made my son better. Every time we payed a visit to the hospital, they apparently wanted to get rid of us as quickly as possible. It was not enough, that they shifted the whole responsibility of caring to the parents, they even implied at first, that our child’s illness was our fault. All this was hard to believe. We love our child above all else and we’d do anything to make him better. As we were utterly exhausted and our hearts were breaking for the child’s endless suffering, they decided to make our burden even bigger. We had to explain this absurd true story to child protection workers. The feeling of humiliation was almost unbearable.
“There are unwritten rules, which make it impossible for doctors to help and which apparently legitimize acting against the rights of a patient, the rights of a child and human rights.”
I always thought, that I was living in a world ruled by the principles of justice and children’s best interest. Now that my eyes have been opened, I find myself in a different world, where the conflicts of medical authority are more important than any suffering child. I can’t get help for my child neither by patiently negotiating nor by crying or shouting. There are unwritten rules, which make it impossible for doctors to help and which apparently legitimize acting against the rights of a patient, the rights of a child and human rights.
We are running out of time. If we can’t get help in Finland, we are forced to leave for another country. We can’t go on like this.
Patients with ME/CFS have to fight in Finland to get appropriate treatment and support like in so many other countries. The model copied from Denmark is about to become the official guidance of the country.
Although the duties of university hospitals include medical research and development of treatments, as far as ME/CFS is concerned, this does not happen. According to the official position of Finland, the illness is a ‘functional disorder’, and treating it physically can exacerbate the symptoms by reinforcing the patient’s conception of the physical nature of the illness. In fact ME/CFS is, indeed, a physical illness, which should be studied and treated accordingly.
By signing this petition you help Finnish patients with ME/CFS and their families to get the help they so desperately need.