imageSwedish TV Programme on ME Services

October 2013

Following on from EMEA Sweden RME's great work in organising a discussion meeting and a meeting in the Swedish parliament - this is from Swedish television - SVT News



Difficult to get specialist treatment - Only three counties provide care for chronic fatigue sverige/40-000-drabbade-men-fa-far-vard

(A rough translation)


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 specialist help.

- 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 right care.

- 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.








Last Update: 27 October 2013