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Friday, May 4, 2012

Update on Karina, a seriously ill ME patient

In the UK we are aware of the case of Sofia Mirza the same mistakes and ignorance that are being seen in Karina's case led to sofia's death.
Karina is so very ill we are v afraid that the move may kill her too.
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

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

If you would like to write to public officials
about her case, here are the basic addresses:

Ministry of Health

Board of Health

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

To remove the incorrect information about ME from official
websites. ( it is listed under 3 codes here and called
kronisk trFthedsyndrom ? chronic tiredness syndrome)

Here it is called somatoform or functional somatic syndrome

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.


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