— a Swedish association for myalgic

2012-04-08 ME-föreningen

Remains of medieval in Swedish health care

The Swedish ME-association "ME-föreningen" has earlier drawn attention to the lack of knowledge about the neuroimmune disease myalgic encephalomyelitis (ME) within the Swedish health care system [1]. We have noticed that there are children with ME that have been forcible committed to psychiatric care in Sweden [2]. Now this is about to happen again. Clearly we have a long way to go, and the slope is steep, much too steep.

For how long may the madness continue? How far may the madness take us? Shall the social authorities forcible commit all children and adolescents with ME to psychiatric care or to foster home before they are satisfied?

A family is currently struggling with the Social Services Committee (socialnämnd), who wants to forcible place their sun with ME in foster home. The child fell sick in ME when he had glandular fever at 9 years of age. He is now 12 years old. A neuro-paediatrician initially gave the diagnosis post-viral fatigue syndrome, but later changed the diagnosis because the child did not get healthy within one year. His explanation then was that the parents caused the illness of the child. He did not want to give a further explanation to it, but one has to assume that he refers to Münchhausen by proxy or something home made without scientific foundation.

The neuro-paediatrician deem that myalgic encephalomyelitis that was initiated in connection with an infection (also termed post-viral fatigue syndrome) can not last for more than one year. This is contrary to common knowledge and science. A common estimation is that 70% of the patients with ME got it in connection to an infection. A longitudinal study shows that 11% of people that get glandular fever also get ME. After one year there are still 7% that have ME, and after two years 4%. There are lots of people chronically ill with ME in Sweden that got ME when they had glandular fever. They are ill for the rest of their lives, i.e. for decades.

The Social Services Committee seems to give the family some extra time, but still threatens to place the child in foster home, if the child does not improve. This is an outrage as no one can know how ME will develop in the future, and to expose the child and family for this kind of pressure shows a total lack of understanding of what ME is. If it would be so well that you could control ME, then there would be tens of thousands of Swedes who would be enormoulsy pleased. Maybe it is time for us to contact the Social Services Committee and ask what secret they have that could give us parts of our lives back.

Having a child loosing its childhood, parents to children with ME has a great deal of grief to handle. Instead of supporting these parents, society accuse them of causing the disease of their children. Instead of supporting the child and give it a secure and safe ambience, one puts the child under stress with the threat it might be separated from its parents, in a situation it is very vulnerable as it has a severe and disabling disease. In addition to this, the disease as such makes it hard to tolerate stress, and it is possible that the permanent exacerbations occur due to the stress and trauma that the child is subjected to.

It is of uttermost importance that people who treat and care for patients with ME has knowledge about the disease. It happens now and then that patients with ME get permanent exacerbations of pushing themselves to much or from too much of stress. The experience of ME-föreningen is that it is far too common that medical physicians and nurses do not have enough knowledge about ME and tries to push these patients to activity. One can guess what will happen if the child falls into the wrong hands.

The problem of forcible commitments of patients with ME in Sweden, is very similar to that of the United Kingdom, which is well represented in the film "Voices from the Shadows" [3]. It can e.g. be seen online [4].

There is an ME clinic at the Hospital in Danderyd in the region of Stockholm. The clinic was opened as a experimental project a year ago. The waiting list is already three years, and they no longer admit patients to the list. The clinic is only for adults (at least 18 years of age). Children and adolescents with ME have nowhere to be referred. A politician in the Regional Government of Stockholm (Stockholms läns landsting) with responsibility for these questions (Stig Nyman, Christian Democrat) belived that the Astrid Lindgren's Children's Hospital, which belongs to the prestigious Karolinska University Hospital in Stockholm, receives children and adolescents with ME, but the ME-föreningen can not confirm this. The information we have received from patients is that there is a total lack of knowledge about ME at the Astrid Lindgren's Children's Hospital. The neuro-paediatric clinic has for example no knowledge, although ME is classified as a neurologic condition by WHO since 1969. It is remarcable that one of the most important university hospital of the country lacks knowledge about ME.

For a long time patients with ME have requested improvements, but nothing happens. Wishes that probably have existed for decades are presented below, but nothing has yet happened. Will something ever happen or will lethargy, inability to act, or total disinterest prevail.

School health services, child- and adolescent psychiatry as well as primary care and psychiatry must take responsibility to become much better at recognizing ME. Too often very unfortunate mistakes are made because they do not know enough about ME and hastily draw wrong conclusions .

My thoughts go to all who have been maltreated by the health care or the social services,

Kasper Ezelius, ME-föreningen




3. The movie "Voices from the Shadows"

4. Look at the movie "Voices from the Shadows" online

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