CFS/ME in Finland

Note: As of September 2010 I no longer live in Finland, but I keep track of the situation through e.g. my forum.

The situation with CFS/ME in Finland is really miserable, especially if you compare it to other Nordic countries - Sweden, Norway and Denmark. No one knows anything about this illness. I mean it quite literally. Most people have never heard of the illness and those who have think it's just tiredness. It doesn't help that the Finnish name translates to "chronic tiredness syndrome" (we have no proper word for fatigue) and the term ME is never used, even though it is commonly used in other Nordic countries. If you're lucky you might know someone who knows that CFS/ME is similar to fibromyalgia.

Most doctors have never heard of the illness either. Only a handful of them know anything about it. The only place where CFS/ME is "officially" treated is the infection clinic of the Helsinki university hospital. There isn't a single CFS/ME expert in the whole country. The closest you get are the chief doctor of the said infection clinic and my own (ex) doctor who is a professor, but neither of them have a fraction of the knowledge that I have about CFS/ME (my doctor has got a lot of ideas from me that he uses for treating his patients, though).

Not a single study of CFS/ME has ever been done in Finland, while the neighbour country of a similar size, Sweden, has several studies done every year. My doctor has tried to fix that, but his attempts to get funding have failed. It didn't help that the neurological research center he worked at went bankrupt. There are probably only a few hundred Finns with a CFS/ME diagnosis. All the rest, tens of thousands of people, have no diagnosis or have an incorrect diagnosis, in most cases probably a psychiatric one or in more severe cases, multiple sclerosis.

The way people with CFS/ME are treated in Finland has pretty much caused me to lose my faith in the doctors. Strangely I have not been told by physicians that the problem is "all in my head", but pretty much everyone else I know has. Men have an easier time, but women are almost bound to be labeled as nutcases. The Finns with CFS/ME I know have been "diagnosed" as having e.g. depression, anxiety disorder, psychosis (two cases) or even an eating disorder. Two were told they are having "young girl's disease" which is obviously not a real medical diagnosis. Several have had their epileptic seizures diagnosed as panic attacks. A friend of mine who is very severely affected has been abused by dozens of doctors to the point of developing post-traumatic stress. Some doctors have even threatened and stalked her.

The infection clinic used to treat CFS/ME decently, even though their medications (prednisone, antibiotics, a few lucky ones got IVIG and antiherpesvirals) were far from adequate. However, recently they have decided that despite all the evidence to the contrary, CFS/ME is a psychiatric problem. A friend who had been getting IVIG and who had been helped by it had it discontinued and told that her problems would go away with psychotherapy, special insoles and going to the gym. Another one was told "IVIG only helps because it forces the patients out of their house every three weeks". I was told "I don't know if I need psychotherapy", despite two neuropsychologists and a psychiatrist having evaluated me and saying I have no psychiatric problems. They have never explained how psychotherapy turns our viral titers negative or fixes immunoglobulin deficiencies or anything like that.

In Finland everyone is covered by a public insurance, so if people get sick they pay our sick leave or disability. Great huh? The bad thing is that the public insurer does not recognize G93.3 as a real illness. Even if you're completely immobile you cannot get benefits based on this diagnosis. I never got a penny of sickness/disability benefits despite being on a sick leave/temporary disability for almost two years. This, of course, not only breaks WHO's rules, but several Finnish laws and the Finnish constitution. Sadly, people who are disabled by CFS/ME are not prime candidates for suing the state. I would have done it if I only had the energy and loads of money to spend on a hopeless case. If I lost, I would have to pay loads of court fees, even if the state had supplied me with a free lawyer.

Resources, media and advocacy

The resources are also non-existent. My website, launched in 2006, is still the only Finnish website about CFS/ME. No medical websites offer any resources about the illness (I have repeatedly asked several, but they never reply). There isn't a single support group, charity or organization dedicated to CFS/ME in Finland, nor has any other disability/illness organization offered any support. I tried to set up something (and to collaborate with other Nordic organizations), but there are too few people and most of them are too disabled. We've tried to write politicians, but they are not interested.

There has been one review article published about CFS/ME in a Finnish medical journal, which is the worst medical paper I've ever seen (and I've read thousands), written by a psychiatrist who couldn't possibly be more clueless and contradictory - he couldn't even agree with himself. Not surprisingly he is an insurance doctor... The only book published about this illness is the one of mine. The textbook Microbiology and Infectious diseases features a short and fairly good (despite containing several errors) article about CFS/ME.

Prior to 2010, there had only ever been two articles about CFS/ME in the Finnish press (one of them great, one of them miserably full of errors which they refused to correct despite my complaint) - there had been some articles of the U.S. epidemics in the 1980s, but to my knowledge they used neither the term ME or CFS (which didn't exist at the time). Even as a journalist I hadn't been able to change this (believe me, I've tried). However, then things began to change. One article in 2010, two in late 2011 and three in 2012 (two of them in very big media). A major TV appearance is scheduled for early 2013, which should be very helpful.

After this TV show and after Ampligen is hopefully approved I plan to ramp up advocacy efforts. It doesn't help if CFS/ME gets recognized and people offered treatment, if it means recognition as a psychiatric condition and "treatment" being CBT and GET, so I feel like Ampligen's approval would definitely help a lot (even if it is not approved in Europe).