[Sweden] Expressen.se: "Karin, 32, imprisoned in her own bed – for five years"

mango

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Karin, 32, fången i sin egen säng – i fem år

Karin Eriksson, 32, och sambon Henrik Fransson, 36, drömde om att gifta sig, skaffa barn och göra fler skidresor och fjällvandringar.

Drömmarna om framtiden krossades när Karin drabbades av den neurologiska sjukdomen ME.

Sen fem år tillbaka ligger hon i sängen i stort sett dygnet runt, isolerad bakom ögonbindel och hörselkåpor.

– Jag har inget liv över huvudtaget. Man är ruinerad på precis allt, säger Karin. [...]
http://www.expressen.se/nyheter/karin-32-fangen-i-sin-egen-sang--i-fem-ar/

Excellent article! :thumbsup: :cry: Well worth a read, and there'a a video interview too.

Please click through to the original article at Expressen.se, even if you don't understand Swedish, because page views and statistics matter, as always. Be warned that a music video advert will start playing at the top of the page within a few seconds!

Here's a sloppy translation:

ETA: I've tried to tidy up the Google translation a little bit, so I hope it's a bit easier to read and understand now.

Google Translate said:
Karin, 32, imprisoned in her own bed - for five years
published January 24, 2017 at 06:51

Karin Eriksson, 32, and her partner Henrik Fransson, 36, dreamed of getting married, having children, and doing more ski trips and mountain hikes.

The dreams of the future were crushed when Karin was affected by the neurological disease ME.

Since five years ago, she lies in bed virtually around the clock, isolated behind a blindfold and earmuffs.

- I have no life at all. Just about everything has been ruined for me, says Karin.

In a small bedroom in the green house in Upplands-Bro outside Stockholm lies Karin Eriksson, 32. She is often blindfolded and wears headphones to block out impressions. She lies like this almost around the clock.

- I'm feeling crap, as always. This is a terribly debilitating disease. When feeling your worst, you aren't able to speak a single word or move a finger. There is no energy in the body, says Karin.

Karin was struck by the neurological disease ME seven years ago. The disease causes exhaustion, both physical and psychological, that doesn't go away with rest. She collapsed at Ikea. The in-laws had to pick her up and drive her home. For the last five years she has been this ill - that she mostly only can lie down and rest.


Home-help service, four times a day.

A few minutes a day she is able to talk, sit up and drink, to be fed, wash herself or go to the bathroom. Karin's total energy account is no more than five to ten minutes per day. That's when all the practical stuff must happen. Home-help service comes four times a day. Her partner Henrik Fransson works as a civil engineer. In the evenings, nights and weekends, he is the one who helps Karin with everything.

- Karin feels terribly poor in general and physically. She can hardly do anything, she can not feed herself or take care of herself, she needs help with everything, says Henrik


In the evenings, nights and weekends, Henrik is the one who takes care of Karin.

Drinking soup of straw
It is time for Karin to eat. Henrik takes out a thai soup and heats it in the microwave. The freezer is full of homemade food in portion-sized containers. Karin mostly eats liquid food, because it is easier to eat. Karin had just completed her studies to become a nutritionist when she fell ill.

- Karin is like an engineer but in nourishment. I often cood food from Karin's own recipes. It is probably thanks to her knowledge that she had not lost weight these years, says Henrik proudly.


The freezer is full of homemade food in portion-sized containers.

Henrik helps Karin drink soup through a straw. Over lunch Expressen are getting a few minutes of her limited active time. It is important to Karin and her partner to spread knowledge about ME. Because the knowledge of ME is poor, even in health care. It took a year and a half, and many visits to the emergency room, before Karin received her diagnosis.

- And for Karin it actually happened quite fast. Many have to wait for ten or fifteen years, says Henrik Fransson, who is also involved in the ME association.



"Life is extremely limited"
It can be difficult to understand what it's like for ME sufferers, says the couple.

- 99.9 percent of Karin's life has been taken away. The disease is much more debilitating what most might think, it limits life immensely, says Henrik.

The most common misconceptions about ME are that it's simply about "pulling oneself together," sleep a little more or start exercising, explains Henrik Fransson.

- It is not the same as suffering from depression or burnout. ME is a physical illness that seems to be caused by the body not producing energy in a normal way. Those who haven't had ME don't know how it feels, he says.

A typical day for Karin
8:00
Wakes up at eight. Lies still, l waiting for the home-help services to come.

11:30
Is fed a liquid breakfast in bed. Gets medications and perhaps help to go to the toilet. Then she lies still, waiting for the home-help service to return.

14:00
The home-help service comes with lunch. She gets soup to drink with a straw, because it takes less energy than food you have to chew. Then she rests again, and wait for the next home-help care visit. She has a glass of water and a straw that she can drink from. Perhaps she is able to get to the portable toilet sitting in her room.

Rest until the next home-help service visit.

16:00
Liquid food, medicines, and maybe help getting to the toilet.

Rest until the next home-help service visit.

19.00
Dinner, the only time of the day she gets real food that you chew. But she isn't able to eat all of it right away.

20:00
Eats the rest of the dinner. Brushes her teeth. Takes her medication. Goes to the toilet. Washes her face. Goes to bed. Often wakes up during the night.

"I have no choice"

Karin tries to explain what it feels like. She speaks slowly, tentatively, searching for words.

- Before I got ME, I had not experienced anything similar. You never experience the main symptoms when you are healthy, they are extreme symptoms. There is an extreme slackness and weakness in the muscles, a burning sensation. No, there really are no good words.

Karin days are long and full of waiting. I ask her how she manages it.

- I have no choice.

What are you thinking about when you are lying here?

- All kinds of things. I have spent a lot of time thinking about our garden, for example, and the decoration of the house. But those are just thoughts, like I said.

If you could have one wish, what would it be?

- That I get better as soon as possible, that I get out of bed and get a life again

Before the disease Karin and Henrik were just like any other young couple. Karin were studying to become a nutritionist, and the couple were planning to build a house, get married, have children and travel more together. They liked outdoor activities, slalom skiing and hiking in the mountains.
But the disease changed everything.

- Life is paused, stopped. Everyone else's life continues, they have children, get married and do things together. We can't do anything. We love each other and like each other but we can't do what we want. It is tough, says Henrik.

Can not have a normal relationship
Karin grieves that her partner has become her carer. They can't have a normal relationship and, for example, talk about what his day at work was like. The small moments Karin are able to talk, it's mostly practical things like medical stuff.

- The relationship has stalled too, says Henrik. But I love her so much and believe that she will become healthy or healthier, so that we will be able to have more of the life we planned. But the uncertainty, whether she will be healthy in a year, ten years or never, weighs heavily.

- What I miss the most are everyday things, like taking a walk, having dinner, or sitting down to talk for more than two minutes. Or just having a cozy Friday evening together on the sofa.

Karin isn't able to keep up with the public debate of social matters. She isn't able to watch television, read books or newspapers. When Henry came home after a business trip in the US, he told her about the election campaign.

- Who is Donald Trump? asked Karin, says Henik.

"Every waking moment is a torment"
In a letter to the home-help service Karin writes that every waking moment is a torment. She still yearns to do so many things, like having a family. "This is probably my greatest horror - I feel that time is ticking away and that I will soon be too old to have children." she writes.

The construction of the couple's dream home has also stopped. The staircase to the upper floor is is pieces, lying on the kitchen floor. Karin is too ill to leave her room for a whole day, therefore the staircase can not be finished.

- This is what it's like with ME. You can't make quick decisions because Karin is only able to discuss for a minute at a time. To choose the color of the house took a whole month.

- Karin has still not been to the garage or seen the front of the house. She has not been able to go outside. It feels more like it's my house and my life than hers, even though this is something we were meant to do together, says Henrik.

Many sufferers have had to wait for a long time
Per Julin, chief physician at Stora Sköndal ME center. He says that the knowledge of ME has been poor. Many sufferers have had to wait for a long time for the right diagnosis, sometimes given the wrong diagnosis and the wrong treatment. To be prescribed exercise, for example, can make ME sufferers worse.


Per Julin is a chief physician, and believes that knowledge of ME is poor.

What causes ME is unknown. Karin and her partner are linking the disease to her getting the influenza vaccine Pandemrix just before she fell ill.

Per Julin says that researchers do not yet know whether there is a connection.

- In general, the advice about vaccinations are the same for ME sufferers as for everyone else.

There is no curative medicine
Today there are no medicines that cure, only those that relieve the symptoms. But there is more research into the disease being done nowadays, after all. Per Julin believes in and is hoping for better drugs.

In Norway there is currently a Rituximab study, an immunosuppressant drug which is used in cancer and rheumatism among others. A smaller study has shown promising results.

- It is too early to tell whether it is beneficial for ME patients, but we hope to have better answers already this year. There is also currently a study in Holland of another drug.

I believe we will get both more understanding of the disease and data from the treatment studies.

In the half-finished house in Upplands-Bro Karin and Henrik are waiting and hoping on a research breakthrough.

- I hope for a treatment that can make Karin better. She doesn't have to become healthy, but if she could be out of bed for an hour a day she would have a life.

I ask Karin what she would do first if she were healthy.

- There's nothing better than downhill skiiing and mountain hiking. But that is far away. Just being able to talk to people and socialize is something you really wish for.

And then Karin's strength deserts her.

- Now we stop, she says weakly.

THIS IS ME / CFS
Myalgic encephalomyelitis (ME) or post-viral fatigue syndrome, formerly known as chronic fatigue syndrome (CFS) is a disorder of unknown cause.

The disease often debuts after an infection, such as mononucleosis.

ME is characterized by severe mental and physical exhaustibility, cognitive issues such as memory and concentration difficulties, as well as "brain fog", sleep disorder, symptoms from the autonomic nervous system, pain, and flu-like symptoms. The symptoms are exacerbated by exertion. The pathological exhaustion does not go away with sleep.

ME patients also have an impaired ability to regain new energy after exertion. Too intense effort leads to backlash, the patient may be bedridden all day afterwards.

To be diagnosed, the symptoms must have lasted at least six months.

ME can cause long-lasting and major disabilities. The sufferers often have difficulties functioning in everyday life.

ME is considered a common disease with an estimated prevalence of between 0.2 and 0.4 percent of the population. There are no reliable statistics, but up to 35,000 to 40,000 Swedes may be affected.

Approximately one in five ME patients are so seriously ill that they are housebound and sometimes also bedridden.

The disease is almost always chronic.

In the past the disease's existence was a controversial issue since it is not easy to diagnose, for example, through a blood sample. But research has shown that it is a both real and serious disease.

The diagnosis is made based on the patient's symptoms and by ruling out other physical, psychological and social causes. Studies are ongoing to find biomarkers that can be used for diagnosis through for example a blood sample.

Today many Swedish doctors are using the strict Canadian criteria. The disease is more common in women and often starts in early middle age, 30-40 years of age.

Today there is no cure, but drugs, aids and adaptation of everyday life can alleviate symptoms. Many sufferers need home-help service, personal assistance and home care.

There is also ongoing research into new treatments, a couple of promising drugs targeting the immune system.

Sources: Per Julin, MD, ME/CFS clinic, Foundation Stora Sköndal, Gottfriesclinic.se, RME [the Swedish ME Association]

- Anna Bäsén
http://www.expressen.se/nyheter/karin-32-fangen-i-sin-egen-sang--i-fem-ar/
 
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Hutan

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Even through the initial rough translation that is a very powerful piece. Thank you very much to Karin and Henrik. I am sure you have helped people to understand better.

Thanks also to the journalist who has done a great job to show the reality of severe ME.
 

Sasha

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Even those of us who can't read the original in Swedish should click the link to give Expressen the traffic (be warned that a music video advert will start playing at the top of the page within a few seconds!

http://www.expressen.se/nyheter/karin-32-fangen-i-sin-egen-sang--i-fem-ar/

@mango, I don't know if you want to add that to your original post?

Thanks so much for the translation into English.
 

Cheesus

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Thank you for sharing this article with us, and thank you for offering to pass on our messages to Karin and Henrik.

I would simply like to let them know that other patients all over the world are standing with them in solidarity. She may feel isolated, but she is not alone. Research is heating up and help is on the way.

Hang in there! We'll all get through this.
 

ScottTriGuy

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Thank you Karin and Henrik for putting your selves in the public eye to help all ME patients.

No doubt you are paying for the effort and exertion. It takes a brave person to knowingly make themselves sicker - especially for meaningful change that is beyond their own immediate needs.
 
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mango

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The support and feedback today on this article has been so strong, that the newspaper just released a follow up-article where the couple give thanks and politely turns down suggestions about eating garlic etc; their hope lies within medical research.
Ooh, that's fantastic! :thumbsup: Thank you so soo much, everyone who had a part in making this happen! :hug:
 

Hajnalka

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Thanks for sharing, great article! :thumbsup: Loved the garlic-part and that it's not (just) about money, but about missing treatment options. (Don't know why people would travel to Germany though, there's nothing to see here, treatment-wise.)
My favorite sentence (google translation):
myalgic encephalomyelitis (ME) or post-viral fatigue syndrome, formerly known as chronic fatigue syndrome (CFS)
:)
 

Jo Best

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My thanks and best wishes also.
I saw the link posted by Invest in ME Research in their facebook group. They said if they have time they'll try to make English subtitles. https://www.facebook.com/groups/5804522506/permalink/10154333648272507/

They wrote -

This is why we do what we do - and why it is urgent.

This is why we are working with RME Sverige within European ME Alliance to build research.

This is why we have invited a dozen top Swedish researchers to our Colloquium in London in June to enhance the international collaboration in research which we have been building for seven years and more - with five Swedish researchers accepting already/speaking at the Colloquium - #BRMEC7.

This is why our Centre of Excellence for ME is so important - with leading research into B-cells, gut microbiome and more being performed and planned.
 
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Later yesterday Expressen published a follow-up article about the strong support from Expressens readers to Karin and Henrik

http://www.expressen.se/nyheter/starka-stodet--till-me-drabbade-karin

Heres a slightly corrected Google translation:

The story of the ME sufferer Karin
Eriksson, 32, and her partner Henrik Fransson, 36, evokes strong emotions.

Many of Expressen's readers are sending love, support and tips.

- We are grateful for an increased understanding of the disease. For Karins sake we hope for a breakthrough in the research, says Henrik.


Today Expressen writes about the ME sufferers Karin Eriksson, who has been a prisoner in her bed for five years. The neurological disease causes fatigue, both physical and mental, that doesn't go away with rest. Karin has just a few minutes' activity time per day when she can eat, talk, take medication and attend to her personal hygiene. If she exceed this her activity time drastically decreases even more.



Karin has home care in the day, but evenings, nights and weekends, it is her partner Henrik Fransson who helps her with everything.

After the article was published, encouraging comments, messages and e-mails poured in.



- I see my Facebook Mail is pretty full! It's great that people gets involved. Many such articles might together add to a new awareness about ME.

. To both health professionals and the general public understand that ME is a disease to be taken seriously, says Henrik.



Karin and Henrik tells their story because they want to increase knowledge about ME. Today there are many prejudices about the disease.

- Some believe that ME sufferers are lazy and just want money from the Social Insurance Agency to lie in bed. The article increase people's understanding . After reading it I do not think there is anyone who would want to switch lives with Karin, says Henrik.



Some doctors deny that ME exists



Not least important is that health professionals can learn more about the disease. There are doctors who don't know ME. Some doctors even deny that the disease exists. Many sufferers have been given the wrong diagnosis and wrong treatment, says Henrik.

- Maybe some doctors read this and understand that they might have sent patients with ME home without the proper diagnosis. It is good that more people are realizing that ME exists.

Many of Expressen's readers get in touch with good advice and tips on alternative treatments, ranging from fish oil to garlic. Henrik kindly thank for all the comitment, but the pair has already tried most things.

- I think we've gone through all the tips available. You grasp at straws, especially in the beginning. It is well-intentioned, but there are few hard facts, science, behind. There are no miracle cures for ME. One should not confuse ME with other diseases. If garlic cured it, maybe it's not ME the person suffered from, says Henrik.



Some readers want to raise money to Karin for her to get alternative treatment with intravenous antibiotics in Germany. But Henry explains that it is not money that is the couple's problem.



- Would it have been as simple as the money, we had gone a long time ago. We know that some travel to Germany and think they are getting better, but what I know there is no good science to show that it really works. It is more to be regarded as experiments, thinks Henry.



New hope for ME sufferers



But now there is new hope for an effective drug for Karin and other ME sufferers. A small study from Norway has shown the positive effect of immunosuppressive medication rituximab, sold under the name MabThera. It is today used to treat cancer and rheumatism. The medicine is given as an infusion and works by killing cells, reducing the number of B-lymphocytes are a type of white blood cells.

Scientists do not know what cause ME, but there are theories that it is caused by defects in the immune system. The theory is supported by the fact that ME often presenting after an infection like mononucleosis. Right now it's a new, larger scientific study of rituximab for ME running. The results are expected this year.

- To test rituximab or other similar treatment is the closest to Karin. I imagine that we'll find a doctor so Karin can try the medication in advance.



But it is a difficult decision for the couple. Rituximab is a powerful drug that also involves risks of side effects. There have been deaths, says Henrik.

- Then there are many doctors who do not dare to try the treatment of ME patients before it got a proper study. Especially after Macchiarini scandal , many doctors are reluctant to try new treatments without standing on steady grounds.


THIS IS ME / CFS

• myalgic encephalomyelitis (ME) or post-viral fatigue syndrome, formerly known as chronic fatigue syndrome (CFS) is a disorder of unknown cause.

• Often debuts after an infection like mononucleosis.

• ME is characterized by severe mental and physical fatigue, cognitive influences memory and concentration disorders, as well as "brain fog", sleep disorder, symptoms of autonomic nervous system, pain, and flu-like symptoms. The symptoms are exacerbated by exertion. The pathological exhaustion can not sleep away.

• ME patients also have impaired ability to have new powers after exertion. Too intense effort leads to backlash, the patient may be bedridden all the next day .

• To be diagnosed, the symptoms have lasted at least six months.

• ME can cause long-lasting and major disabilities. The victims are often difficult to function in everyday life.

• ME is considered to be a common disease with an estimated prevalence of between 0.2 and 0.4 percent of the population. There are no reliable statistics but up to 35,000 to 40,000 Swedes may be affected.

• Approximately every fifth ME patient are so seriously ill that the person is tied to the home and sometimes bedridden.

• The disease is almost always chronic.

• In the past, the disease's existence was controversial as it is not easy to diagnose, by for example, a blood sample. But research has shown that that its a real and serious disease.

• The diagnosis is made based on the patient's symptoms and by ruling out other physical, psychological and social causes. Studies are going on to find biomarkers that can be used for diagnosis of for example a blood sample.

• Today, many Swedish doctors use the strict criteria Canada. The disease is more common in women and often starts in early middle age, 30-40 years of age.

• Today there is no cure, but drugs, aids and adaptation of everyday life can relieve symptoms. Many sufferers need home care, personal assistance and home care.

• There is also ongoing research into new treatments, a couple of promising drug targets the immune system.


Source: Per Julin, MD, ME / CFS clinic, Foundation Stora Sköndal, Gottfriesclinic.se, the National Association for ME patients
 
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