ME -Remains of Medieval in Swedish Health Care

[Guest guest]

ME-föreningen: Kasper Ezelius

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,

the slope is steep, 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 no where 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.

Each Region (landsting) has at least one medical physician

with knowledge and experience of ME, of course receiving

both children and adults.

Home visits are made to severely affected patients.

University education for medical physicians and nurses take

up ME.

The government, universities and regional governments

ensure that research into ME have resources comparable to

other diseases wit the same frequency and disability.

A tissue bank including post mortem tissues is established

for biomedical research.

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 the wrong

conclusions .

My thoughts go to all who have been maltreated by the

health care or the social services,

Kasper Ezelius, ME-föreningen

References:

1. http://me-foreningen.se/foreningen-historik.htm

2. http://me-foreningen.se/dok/100512-internationella-me-dagen.htm

3. The movie " Voices from the Shadows "

http://voicesfromtheshadowsfilm.co.uk/

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

http://mubi.com/films/voices-from-the-shadows

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P.S.

The article can be found via the links below also. Small

corrections of the text may be done there afterwards also,

so if one wants the last version go there.

English: http://me-foreningen.se/dok/120408-medieval-swedish-healthcare.htm

Swedish: http://me-foreningen.se/dok/120408-medeltid-svensk-sjukvard.htm