Finland
I asked the Finnish CFS Association what it was like to live with ME there and what treatments were available. Here’s an edited summary of what I found out;
· It’s estimated that there are around 2000 diagnosed CFS/ME sufferers in Finland. However the real number is closer to 50,000 due to mis-diagnosis from doctors.
· CFS/ME is classified as a psychiatric disorder by most of the doctors and they tend to treat it with antidepressants and graded exercise therapy (GET) which are potentially very harmful to patients and may permanently worsen their condition. Fortunately for the patients even these harmful therapies seem unavailable as there are no experts to even carry out GET-therapy. Patients are totally left without any care.
· CFS/ME sufferers would rather not go to see a doctor because they feel very much misunderstood, neglected and even accused of making the symptoms up. According to doctors they are having just too many widespread symptoms to be taken seriously. Doctors can't see the big picture and the failure of the autonomic nervous system behind all the symptoms.
· The few capable doctors that know the illness and know the diagnostic criteria and would be able to treat the patients are afraid of any research ruining their reputation and career and would rather stay anonymous/quiet.
· The patients are not eligible for social security and illness based benefits which are offered by The Finnish Social Insurance Institution (KELA) and insurance companies. According to the Social Insurance Institution there is no medical reason for their disability and therefore the patients are considered as ‘unemployed but disabled’. Sufferers are expected to seek a job even though they are not physically capable of working. This leads to poverty especially for younger sufferers who have the illness from a young age and don’t have a school degree or education; they are forced to live in poverty.
· The care that can be given at this point is only available to those patients with high financial resources. They have to find capable private doctors themselves which can be down to pure luck alone.
I fear that that some of the points above will become very familiar as I travel around Europe. Although the situation is obviously awful, there can be hope that as the Finnish ME Association is part of the European ME Alliance, ideas and research can hopefully be shared. It’s clear that doctors need to be brave and specialists need to be found to facilitate any change to the status quo.
I’m realistic about what I can achieve when I visit Helsinki. I hope that by working with the Finnish ME Association we can make a small noise to raise awareness and help change the attitudes of at least a few. That and finishing the race will make it a successful trip.
Aug 2015
I asked the Finnish CFS Association what it was like to live with ME there and what treatments were available. Here’s an edited summary of what I found out;
· It’s estimated that there are around 2000 diagnosed CFS/ME sufferers in Finland. However the real number is closer to 50,000 due to mis-diagnosis from doctors.
· CFS/ME is classified as a psychiatric disorder by most of the doctors and they tend to treat it with antidepressants and graded exercise therapy (GET) which are potentially very harmful to patients and may permanently worsen their condition. Fortunately for the patients even these harmful therapies seem unavailable as there are no experts to even carry out GET-therapy. Patients are totally left without any care.
· CFS/ME sufferers would rather not go to see a doctor because they feel very much misunderstood, neglected and even accused of making the symptoms up. According to doctors they are having just too many widespread symptoms to be taken seriously. Doctors can't see the big picture and the failure of the autonomic nervous system behind all the symptoms.
· The few capable doctors that know the illness and know the diagnostic criteria and would be able to treat the patients are afraid of any research ruining their reputation and career and would rather stay anonymous/quiet.
· The patients are not eligible for social security and illness based benefits which are offered by The Finnish Social Insurance Institution (KELA) and insurance companies. According to the Social Insurance Institution there is no medical reason for their disability and therefore the patients are considered as ‘unemployed but disabled’. Sufferers are expected to seek a job even though they are not physically capable of working. This leads to poverty especially for younger sufferers who have the illness from a young age and don’t have a school degree or education; they are forced to live in poverty.
· The care that can be given at this point is only available to those patients with high financial resources. They have to find capable private doctors themselves which can be down to pure luck alone.
I fear that that some of the points above will become very familiar as I travel around Europe. Although the situation is obviously awful, there can be hope that as the Finnish ME Association is part of the European ME Alliance, ideas and research can hopefully be shared. It’s clear that doctors need to be brave and specialists need to be found to facilitate any change to the status quo.
I’m realistic about what I can achieve when I visit Helsinki. I hope that by working with the Finnish ME Association we can make a small noise to raise awareness and help change the attitudes of at least a few. That and finishing the race will make it a successful trip.
Aug 2015