Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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[Sweden] Expressen.se: "Karin, 32, imprisoned in her own bed – for five years"

Discussion in 'General ME/CFS News' started by mango, Jan 24, 2017.

  1. mango

    mango Senior Member

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    [​IMG]
    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.

    http://www.expressen.se/nyheter/karin-32-fangen-i-sin-egen-sang--i-fem-ar/
     
    Last edited: Jan 24, 2017
    Chezboo, merylg, nandixon and 26 others like this.
  2. mango

    mango Senior Member

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  3. mango

    mango Senior Member

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    Also, I will forward the comments in this thread to Karin & Henrik. In case you'd like to say, for example, thank you :)
     
    merylg, Jo Best, RL_sparky and 11 others like this.
  4. sarah darwins

    sarah darwins I told you I was ill

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    Very best wishes to Karin and Henrik. And thanks for having the courage to talk publicly about this. I really hope a few more medical scientists will see this and be moved to get involved in finding answers so that people like Karin, much sicker than I am, can get their lives back. Good luck.
     
  5. Kalliope

    Kalliope Senior Member

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    This was a very good article on ME! Thank you so much brave Karin and Henrik for doing this. Varm thoughts to both of you! And thanks @mango for sharing it here.
     
    merylg, Jo Best, ScottTriGuy and 9 others like this.
  6. Hutan

    Hutan Senior Member

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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.
     
    Chezboo, merylg, Jo Best and 12 others like this.
  7. Sasha

    Sasha Fine, thank you

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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.
     
    merylg, Hutan, ScottTriGuy and 9 others like this.
  8. Cheesus

    Cheesus Senior Member

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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.
     
    merylg, Jennifer J, Jo Best and 12 others like this.
  9. Snow Leopard

    Snow Leopard Hibernating

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  10. Invisible Woman

    Invisible Woman Senior Member

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    Great article. Thank you so much.
     
    merylg, Jennifer J, mango and 3 others like this.
  11. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

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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.
     
    Last edited: Jan 24, 2017
    Solstice, Valentijn, merylg and 16 others like this.
  12. Kalliope

    Kalliope Senior Member

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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.
     
  13. mango

    mango Senior Member

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    Ooh, that's fantastic! :thumbsup: Thank you so soo much, everyone who had a part in making this happen! :hug:
     
  14. Joh

    Joh Inactivist

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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):
    :)
     
  15. Jo Best

    Jo Best Senior Member

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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 -

     
  16. Susanna D

    Susanna D

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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
     
    Last edited: Jan 25, 2017
    JaimeS, mango, Solstice and 14 others like this.

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