WHAT IS "UNETTOMAT"?
In February 1994, an article in a local newspaper (serving Tampere , a city of around 200,000 inhabitants) featured Ruth Koskinen who had experienced 14 years of relentless, chronic insomnia and had eventually been compelled to give up her teaching work and post-graduate studies. She knew she couldn´t be alone with the problem and , through the medium of the paper, asked fellow sufferers to contact her, with the view in mind of setting up some kind of self-help group. The response was overwhelming and by the following month, the Finnish Insomniacs' Association (Unettomat ry) was born, with a membership of around 40. At present, there are over 200 paid up members from all over Finland (population of around 5 million), with many hundreds more having contacted us for advice or attended our public lectures.

Objectives and activities
We endeavor to promote the interests of all chronic insomnia sufferers and increase awareness among the general public and medical profession. It is clear to us that insomnia is a label behind which lies a multitude of causes and factors which are only partly understood or recognized by medical science. See the article in JAMA( Journal of the American Medical Association) Nov.26, 1997, pp 1647-1649 as good, brief, readable, overview on the matter). For some of our members, insomnia was triggered by a personal crisis, serious illness, operation or stress and persisted with a life of its own long after the apparent cause had been resolved. Others cannot identify any precipitating cause for their disorder. Genetic predisposition seems to be a factor in many cases. What we all have in common is the experience of sleeping far too little and badly for individual needs, with such consequent symptoms as daytime tiredness, pain, lowering of immunity to other illnesses, lack of concentration, memory loss, depression and decline in the quality of life. Long sick leaves are often inevitable and even disability retirement is not uncommon, although the latter is always granted for some other, officially recognized, illness, since insomnia alone is not yet eligible for pension rights.

Nearly all of us have met with dismissive attitudes in the medical profession, which tends to trivialize the problem. Some doctors are unwilling to prescribe medication because " people will always sleep if they are sufficiently tired" while others willingly prescribe sleeping pills, tranquilizers and anti-depressants without more than a summary investigation. There are many who thus feel trapped in their dependency on medication , feeling the downside of unpleasant side-effects but not knowing what to do to find other solutions. It's extremely difficult to get onto a public health (long) waiting list for a sleep laboratory investigation and , even then, if no measurable, neurological disorder is revealed, the result is often only a confirmation that a patient sleeps badly, without any course of treatment to follow.

So, one of our Association's tasks is to inform doctors of our needs and to inform patients of available treatments, sleep lab. procedures and research projects.

Medical school training in Finland is hopelessly inadequate in the area of sleep disorders in general. However, on their third attempt, the Finnish Sleep Research Society has ( with our contributory petition a decisive factor) had their application approved by the Medical Association for a sleep disorder specialization scheme. This will be available for physicians already specialized in other fields. Hopefully, this will pave the way for motivated professionals to undergo training here and abroad in order to meet the scheme's requirements, with benefits eventually percolating through to us, the patients.

Such developments as this are conveyed to our members in the quarterly newsletters, which include information about recent research results from around the world, local meetings and events, media publicity , members' comments and individual/Association achievements. We have been a channel for Finnish researchers to recruit subjects for pilot therapy treatments or clinical research. At the moment, for example, 80 of our members are taking part in an ambitious research project attempting to evaluate the effect of chronic insomnia on daytime psychological functioning.

We are also allotted a regular column in the quarterly publication of the Finnish Patients Association, which reaches a much wider audience, including health professionals and institutions.

Since our Association was founded in Tampere, it is here that the program and provision of public lectures are at their most impressive! A local group as been set up in the coastal city of Turku and Helsinki insomniacs have been able to meet regularly in the premises of the Association for Healthy Lifestyles which has also arranged specialist talks and public lectures.

Meetings in Tampere are held monthly in the magnificent, modern Central Library, giving members the opportunity to meet each other and share experiences and survival strategies. Public lectures and presentations range in subject matter from current medical research results, medication and psychotherapy to complementary therapies of the "Alternative Medicine" variety.

Inspired by Sleep/Wake Canada's biannual Sleep Awareness Week, we initiated Finland's first National Sleep Week at the end of October, 1997. It was sponsored by the Finnish Association for Healthy Lifestyles and organized in cooperation wit the Finnish Sleep Research Society. The principal guest speaker was Dr Chris Idzikowski (Chairman of the British Sleep Society 1995 - 1997). who gave unstintingly of his time and enthusiasm during a very busy public lecture tour, taking in Helsinki, Turku, Tampere, Oulu and, finally, Rovaniemi, in Lapland. Together with the numerous contributions made by Finnish sleep specialists on the lecture front, the week was a resounding success, capturing the attention of the media and providing the chance for many reticent insomnia sufferers to speak out and/or join our ranks. October 1998 saw the second Sleep Week, this time with a less ambitious, lower profile (that first Week was organized almost entirely by exhausted insomniac volunteers!), but still with plenty of media coverage. October 1999 is currently in the pipeline. Watch this space!

Funding
For the first three years of our existence we depended entirely on membership fees , the goodwill of guest speakers and the devoted work of voluntary (insomniac) workers. We now have a secretary who is our first non-insomniac voluntary committee member, and we hope to attract more such helpers who could relieve the sometimes overwhelming pressure incurred by

lack of sleep. Since 1997, we've been "saved" by the financial contributions granted by the Finnish Patients Association covering most of our travelling expenses, phone calls and printing costs. Postage of membership letters is sponsored by a variety of commercial enterprises connected with sleep.

One of our members has provided office space right in the centre of Tampere and we have at last succeeded in obtaining the part-time services of an efficient, empathetic office worker through a government re-employment scheme!

The Finnish Sleep Federation
January this year (1999), saw the formation of the Finnish Sleep Federation, modelled on the Sleep Foundation in the USA. At present, it consists of the Finnish Apnea Patients Association, The Finnish Insomniacs Association, the Finnish Narcolepsia Patients Association, the Finnish Restless Legs Association and the Finnish Sleep Research Society. The chairman is Dr Markku Partinen , chairman of the Finnish Sleep Research Society. The idea is to use our combined efforts to maximise publicity and opportunities for funding!

Contact addresses:
Finnish Insomniacs Association/Unettomat
Laukontori 6B3
33200 Tampere

Fax: +358 3 2127179
Phone calls in English : +358 3 2127485 (Ruth Koskinen)
E-mail: [email protected] (Johanna Moisio, Chairperson)

© Chris Idzikowski 1998-2004