Difficult to get specialist treatment - Only three counties provide care for chronic fatigue
(A rough translation)
PUBLISHED OCTOBER 17, 2013
Imagine you get flu and it never goes away. That's how it is to
have ME or Chronic Fatigue Syndrome. The Left Party's former party secretary,
Pernilla Zethraeus, is one of 40,000 victims (in Sweden).
She sleeps on average 12 hours per night and rests for an
additional 9 hours.
The rest of the time she moves slowly and carefully in the home,
arranges breakfast, goes to the bathroom.
If she does any more, such as taking transportation service down
to town and have coffee with a friend for a few hours, then she needs to rest
for several days afterwards.
- "This is not me. I want to be under fire, I want to change
society. This is very far from the life I want to live and the will to do things
every day, it is still there.
There are going to pretty much self-control and you have to be
pretty strong to cope with a life such as this.
To live in such isolation, with so little stimulation, having so
little external contacts," Pernilla Zethraeus.
Affects mostly women
ME is classified as a neuro-immunological disease by WHO. It
affects mostly women but also children and men fall ill. ME exists all over the
world. In Sweden there is estimated around 40,000 affected but only a few get
the diagnosis, let alone the right treatment. The reason is that there are only
two small clinics that specialise in ME, one in Halland and one in western
Götaland and also a temporary project clinic in Stockholm County. Only those who
are fortunate enough to live in the right county and get a referral, will get
- It's really bad. Only in Stockholm we have a huge influx of
referrals and we can maybe take care of a quarter of the referrals we receive,
whcih is very unsatisfactory. And then it's just the assessment, says Ewa
Milerad, Chief of the ME clinic at Danderyd Hospital.
"Impossible to get inquiry"
Pernilla Zethraeus tried to ward off the disease for several
years, but in the end was not able to any longer. She understood that it was
something other than just recurrent infections.
- I tried to be examined before and after obtaining a sickness
absence from the national health system. It was nearly impossible. Family
doctors passed in revue and there was no specialist to be referred to so in the
end, in 2006, I gathered my own money, went to a private clinic and bought
myself an examination, says Pernilla Zethraeus
Lower quality of life than for heart disease
Doctor Olof Zachrisson has a PhD in ME and is working in the
Gottfries Clinic in Mölndal.
- You can compare the quality of life in other diseases and in
these patients is lower than for serious heart disease and several rather severe
rheumatic and neurological diseases.
They lie very low in quality of life and on the functional level,
says Olof Zachrisson.
- Unfortunately, these patients receive poor care, they float
around. I believe that many of these patients are invisible.
Paid 100,000 for the right care
ME is a complicated disease and virtually incurable. But those
who receive a diagnosis usually have much better quality of life compared to
those who did not get a diagnosis - as many of the symptoms can be alleviated
with proper treatment. A treatment that very few in Sweden have access to.
Pernilla Zethraeus has paid out about 100 000 kronor of its own money to get the
- I need a ME specialist to call tomorrow and discuss my
medication, take additional samples, get appropriate advice. It is my wish,
because I now know that it is not realistic to believe that I will be healthy
tomorrow. But of course, what I really want is to avoid having to live with
this, to be able to work tomorrow. I want to enter politics, I want to return to
parliament, says Pernilla Zethraeus.