ME - UPdate Karina from Denmark

[Guest guest]

From: Marry Molendijk

Update on Karina:

Thanks for all the support and good advice I have gotten from

around the world. So great to feel the power of the

ME-community. Here is more info on the situation.

Nothing is happening today. The family is waiting for a

message from the caseworker from the Board of Health. I

am verifying that person?s name now and will share it later.

The facts are that a meeting was held about Karina?s case

at which a Board of Health doctor stated that they ?equate

ME with insanity? and suggested the girl be forcibly removed

from her home. The family is asking for a copy of the notes

from this meeting and a list of the doctors at this meeting.

We are also asking for their plan of action for her if they do

remove her.

That is all I know today ? but will post again as soon as

anything develops. Now the family has to wait until the case

worker calls them. They don?t know how long that will be.

And there is a long weekend coming up ? Friday is a holiday

in Denmark ? Big Praying Day. Seems fitting in a way?

Here is a little more background info about Karina and her

case.

Her name is Karina Hansen and she lives in Holstebro,

Denmark. She has been sick since she was 16 ? after an

Epstein-Barr infection.

Because of lack of understanding about her condition, she

was encouraged to exercise. Which always led to a

worsening of her condition.

On May 12th, 2010, her GP pushed her parents into

admitting Karina to the hospital for ?rehabilitation?. While she

was there, the GP tried to get her committed to a

psychiatric hospital. They were not able to do it, as Karina

is not mentally ill. She has been evaluated several times

and found mentally healthy.

During this time I put them in contact with Dr. Isager, the

Danish ME expert. He was able to get Karina out of the

hospital and gave her a diagnosis of ME. The hospitalization

made her so sick that she has since been completely

bed-bound, lives in a dark room and can?t tolerate any noise.

Her family lives in a trailer in the yard . It is so painful for her

to be touched that her mom has not been able to wash her

for 2 years. She grows weaker by the day. Dr. Isager

suggested that she have an IV put in at home in order to

keep her alive. Her new GP has been very good and tried

everything she can to make this happen.

So? there is a good ME-expert involved but the government

does not recognize him as an expert in ME. And Karna has

a good GP. But the government officials and the specialists

at the hospitals are blocking her from getting the help she

needs.

If you would like to write to public officials

about her case, here are the basic addresses:

Ministry of Health sum@...

Board of Health sst@...

I will try to find more specific ones later.

What we are asking for is:

That they listen to the advice of Dr. Isager and her GP.

(Sorry I can?t give out her name until I ok it with her.)

To have the Board of Health and Ministry of Health respect

the WHO code for ME G93.3 and treat it as a neurological

disease.

To remove the incorrect information about ME from official

websites. ( it is listed under 3 codes here and called

kronisk trFthedsyndrom ? chronic tiredness syndrome)

http://laegehaandbogen.dk/legehandbogen/generelt/kronisk-trethedssyndrom-1314.ht\

ml

Here it is called somatoform or functional somatic syndrome

https://www.sundhed.dk/sundhedsfaglig/praksisinformation/almen-praksis/hovedstad\

en/patientforloeb/forloebsbeskrivelser-icpc/p-psykisk/somatoform-lidelse/

it is because of sites like these that the misinformation

about ME exists and thrives in Denmark

And last but not least ? to have the government recommend

the ICC criteria to diagnose ME.

Again ? thanks for all the support and help. I felt so helpless

last night when I got the call from Karina?s mom ? but today I

have hope that together we can create real awareness

about ME. Thanks for that.