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Two ME-articles in Swedish newspaper Aftonbladet (incl. interview with prof. Blomberg)

Discussion in 'General ME/CFS News' started by Kalliope, Feb 11, 2018.

  1. Kalliope

    Kalliope Senior Member (Voting Rights)

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    Yesterday there were two articles about ME in the Swedish tabloid paper Aftonbladet.
    I wasn't able to google translate these articles for some reason.. Others are very welcome to have a go!

    Aftonbladet "Det enda jag tänkt på i tre år är den här jävla sjukdomen"
    The only thing I've thought about for three years is this damn disease

    About 32 year old Anki Johansson who got ill with ME three years ago. She is mostly bed bound and her boyfriend is her carer. They tried receiving help from home care services, but it was too much having different people coming, and needing to explain them again and again where things are etc.

    Aftonbladet "Forskare: "I Norge försöker man göra något"
    Researcher: I Norway they're actually trying to do something

    Professor emeritus in clinical virology at Uppsala University Jonas Blomberg says that in Norway there is extensive specialist competence and earmarked money for ME-research. The Swedish care for ME-patients is far behind. "The fact that we are so focused on evidence-based medicine in Sweden, leads to bad consequences for this patient group".

    Today there are many Swedish patients seeking expensive care and help abroad, as for instance Germany. The professor think that shouldn't have to be necessary. He also believes there are major risks with these treatments which often involves many months with powerful antibiotics. This in view of the risks of penicillin resistance.
     
    Last edited: Feb 11, 2018
  2. Kalliope

    Kalliope Senior Member (Voting Rights)

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    My comment to the article with Blomberg is that things are far from perfect in Norway. There is not much help in specialist competence when their approach is biopsychosocial with GET and CBT as treatments.

    Also, by relaxing on the principle of evidence-based treatments for ME, as Norway did, it just opened the doors for LP as a treatment recommendation from those with "specialist competence".

    Don't repeat our mistakes.
     
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  3. Helen

    Helen Senior Member (Voting Rights)

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    @Liv aka Mrs Sowester @Valentijn @Andy or anyone, are we allowed to post translations like the following?

    The interview with ME-patient Anki Johanssson from to the link in the first post translated by Google:

    "The only thing I was thinking of in three years is this damn disease"
    ME-sick Anki Johansson's body is her prison.

    She lives in her bed every day - in a dark room.

    "The life I have right now is no life, everything you can get better is better than this," she says.
    Just over three years ago, Anki Johansson, now 32 years old, was a very ordinary toddler mother.
    Jobs as a nurse in the care, baked, moved outside in the woods and landed with their family and went with friends. A person who would rather take care of someone other than being taken care of.
    Today, her life looks completely different.

    Completely dependent on cohabitation
    Anki Johansson is completely sick and lies in bed almost 24 hours a day.
    Anki Johansson is fully sick and lies in bed almost 24 hours, wearing ear cloaks, ear plugs and eyelashes to close out the sound and light and is completely dependent on his partner Jonas Frisk.
    The explanation is the disease she suffered from ME / CFS, myalgic encephalomyelitis, previously called chronic fatigue syndrome and is a disease of muscle pain and inflammation of the brain and spinal cord. The clearest criterion for a diagnosis is physical and mental fatigue that can not be rested and exacerbated by exertion.
    There is no known treatment, no medication to insert. For many, ME is life-long, others get better over the years.
    Many sufferers have had a number of bacterial or viral infections before they became ill. So it was also for Anki Johansson who had an influenza that never passed.

    Many affected
    ME is still relatively unknown in Sweden, although as many as 40,000 people, most women between the ages of 30 and 50, may suffer from it. Even children can suffer.
    Meanwhile, ME has been more aware, among other things, since several famous people have told us how they were affected. Some of them are Brother Daniel singer Henrik Berggren, author Karin Alvtegen and former party secretary of the Left Party, Pernilla Zethraeus.

    Three years ago she was out
    In Anki Johansson's case, ME has made her sick since the fall of 2014 has lost weight from about 60 kilograms to today's 47th. Much of the muscles have disappeared because she is basically bedbound.
    She eats all her meals half-seated in bed and can only be up wheelchair a few minutes each day.
    "I'm hard limited, I need help with most of my everyday lives. Can not strain the body physically without backlash and I'm sensitive to stimulus, noise, light and mental activity, "she says.
    "I lay all the days in bed. Can not make a visit where I have to keep the concentration up without getting worse and getting increased symptoms. I can not watch tv, listen to music, read books.
    It is three years since she could last out in her own garden.

    The children biggest grief
    The biggest grief, says Anki Johansson, is the forced isolation and not being the mother she wants to her children, 9 and 6 years old.
    The voice sticks and the tears are close when she talks about her children and that they, the whole family, are forced to adapt to her illness.
    "In the first year I had a lot of sorrow, I was sad and shocked at what happened.
    A really good day, the children can fall asleep next to her mother in her bedroom. And cohabitation lay for a moment and talk carefully to her. However, the couple can no longer sleep together.
    The impressions become easy for many and every over effort makes her worse for several days. Symptoms like fever, aches in the body, the throat, the ears, a pulse that rushes, increased brain fatigue follows.

    Dreaming that energy is up to more
    Today's sorrow has been transformed into a hope of a better future - the more known the disease will be.
    "Now I've started thinking a lot about what I would like to do. Just everyday, being able to work up in a wheelchair and being with family a little more would make this happen to more of a life.
    The desire to disclose the disease for Sweden to start investing in research, specialist clinics and training of healthcare personnel is also the explanation that Anki Johansson and Jonas Frisk receive us from Aftonbladet in his home in Karlskoga.
    They both know that fatigue will lead to a deterioration, perhaps for several weeks.
    "I have the hope that it will reach out and research more and get drugs as a symptom linder and give us a better life. The life I have right now is no life; all things that get better are better than this.

    Treatment in Germany
    Anki Johansson was diagnosed a year ago at a private clinic in southern Sweden specializing in patients with ME.
    Prior to that, the family, with the help of friends who started a collection on Facebook, also attempted long-term treatment with antibiotics at a medical clinic in Germany. However, the effect quickly slowed down, the costs were high and the journey so strenuous to Anki that you have not made any more visits.
    Even in the ordinary county-run care, she went through a series of investigations and sampling.
    At the beginning of the illness Anki Johansson slept 20 hours a day, the body was completely over. Today, she has big problems sleeping and forced to take sleep tablets every night.
    Three times since Anki became ill, she has been sent to psychiatry for investigation.
    "And all three times it has been found that she is mentally healthy but has extensive bodily problems," says Jonas Frisk.
    Today, Anki Johansson belongs to the usual primary care, a healthcare center. And waiting for yet another neurological investigation, promised her doctor promised.

    Living different lives
    Even Jonas Frisk has been severely affected by his cohabite's disease. He entered the wall and was sick for a year. Then the insurance fund stopped and he currently works full time and takes care of his partner and the two children.
    Every morning he puts everything she needs to make a day in bed.
    Posting clothes and hygiene items. At lunch he goes home and heats food and beds the bed. In the evening he helps Anki, the children, cooks food, launders and folds laundry.
    - We have no life, we are a family but live completely different lives. It becomes so noticeable when talking to others or watching social media, they are on vacation and doing things. What do I do? I wash and clean and am with the kids, says Jonas Frisk.
    His parents help everything they can, they often take care of the children. Ankis parents are no longer in life.
    "I can not go away, although someone could have taken over here at home, that's the bad conscience, I'm always thinking about how Anki has it."

    Tired out easily
    The family tried home help for a while, but it did not work because there are no guidelines for how to treat ME sick. There were new staff almost every day and Anki Johansson had to make every effort to tell me time and again where things exist and what help she needs.
    "They were great, but new people did not work all the time. Jonas and I are so touched that we do not need to use any words.
    Jonas Frisk gives his partner a glass of water and strokes her cheek. That we asked questions for an hour and highlighted the room for the sake of the television will start to take its right. Anki fades, gets red spots on the chest and experiences difficulties in formulating.
    We take a break and let her rest.
    Meanwhile, Jonas Frisk prepares food for his partner. He has to cook Ankis food separately from his and children because the disease also made her hypersensitive to a range of foods and spices.

    ME forum
    In the days, Anki Johansson tries to keep in touch with other ME sufferers through a Facebook forum. Her mobile phone has become the only contact with the outside world.
    The small screen where she can choose at what rate she should look can concentrate on in short moments.
    Many ME patients feel questioned by the care and have difficulty gaining understanding from the outside world. Some are stamped as depressed, burned out, mentally ill.
    Anki Johansson and Jonas Frisk return a few times to understand that patients with other diseases, such as MS, were also questioned before knowledge increased. They find a jump in it.
    Have you doubted your diagnosis yourself?
    - A period when we received a lot of counterattack from the care, when nothing was found, I began to think "what seventeen is this". I felt I was dying!
    Anki Johansson continues:
    "I've always known that something is wrong, but I have not been able to put my finger on what it is. There is nothing like this, unable to be among people and forced to isolate. It's almost so that you're ashamed of its illness.
    "The only thing I've been thinking of in three years is this damn disease and how I'll get it, that's the only thing you can focus on when lying like this, you're in an internal struggle.

    __________________________________________

    The interview with Jonas Blomberg from the link in post 1 translated with Google:

    Researchers: "In Norway, try to do something"

    In Norway there is extensive specialist competence and millions have been earmarked for research on ME.
    The Swedish ME Care Center is far behind.
    "We are so focused on evidence-based medicine in Sweden, which gives a sad effect to this patient group," says Professor Jonas Blomberg.

    Researcher Jonas Blomberg, Professor Emeritus in Clinical Virology at Uppsala University, is one of Sweden's top experts in ME / CFS.
    He describes it as a disease of abnormal fatigue that can not be lost, where exertion can exacerbate the problems and diagnoses by excluding other possible diseases.

    Starting after the flu
    However, exactly what causes ME is not yet established.
    - The disease usually occurs after a flu where symptoms persist but the infection itself has disappeared a long time ago. You will never get started again, says Blomberg.
    Today there are no blood samples that can be taken as evidence of ME.
    This makes it difficult for patients to get the right diagnosis, the researcher argues and points out that what is really good - that we want clear measurable evidence in Sweden - affects ME patients hard.
    "That we are so focused on evidence-based medicine in Sweden gives a sad effect to this patient group.

    Norway in the front line
    Sweden is far behind our neighboring Norway in terms of the ME / CFS view. There the knowledge is great throughout the entire care chain and there are a number of specialist doctors and clinics, witnessing a number of people that Aftonbladet talked to. Millions of research have been invested both through a private foundation and the Norwegian state.
    Jonas Blomberg thinks that Sweden would have to do more for these patients, a forgotten group.
    "It's about tens of thousands of people and they are worthy to get proper treatment and treatment as far as possible," he says.
    "This is possible without significant costs in Norway. There is an official acceptance of the disease and a large part of the medical establishment tries to do something about it, instead of here, just shut up and stop the head in the sand.

    Promising research
    Jonas Blomberg thinks there is a coordinator for the questions and more research. Especially when you begin to find the riddle's solution to the tracks. Perhaps it may be a disease that can be hardened by attenuating the patient's immune system, such as rheumatism and MS disorders.
    Many Swedish patients today seek costly care abroad for assistance, such as Germany. The professor thinks that should not be necessary. He also believes that there are major risks with these treatments, often based on powerful antibiotic medication for six-year periods. This is in view of the risk of developing resistance to penicillin.

    Patient organization: Raise knowledge
    Even Kerstin Heiling, chairman of the patient organization RME and mother of a son of the disease, thinks that it needs to be done more for these patients in Sweden.
    The most important thing is to raise the level of knowledge in primary care, she says, but adds that it is not reasonable to ask individual doctors to control the diagnosis and treatment of these patients, as the disease is so complicated.
    Therefore, the RME believes that specialists need to be set up in each county council. Today there are three-four, of which two in Stockholm are county councils and have long waiting times.
    "Many who are very bad can not get to Stockholm, which means that those who are sickest are at risk of being forgotten," says Kerstin Heiling.
    "Most people have to wait a long time for the correct diagnosis, and many are diagnosed with faults and get inaccurate advice that can aggravate the disease. Exercising and increasing activity for example, it is good for most, but for ME patients it is directly wrong.
    RME also drives for increased research in the field.


     
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  4. Liv aka Mrs Sowester

    Liv aka Mrs Sowester Senior Member (Voting Rights)

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    It's definitely welcome to post translations @Helen. Thank you for posting :)
     
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  5. Andy

    Andy Senior Member (Voting Rights)

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    Best to post just the first two paragraphs (or at most something like 25% of a shorter article) and then the link to the Google translation. This should then be OK under "fair use" concepts. Technically posting the whole thing is likely to be viewed as breach of copyright.
     
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  6. Luther Blissett

    Luther Blissett Senior Member (Voting Rights)

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    https://translate.yandex.com/

    Is a good bet to try if your google translate doesn't work @Kalliope . It auto detects the language to translate from and you can put in the web address or paste text in. I'm not sure of the quality, might be better, worse or just different.

    It translated the first article headline as "The only thing I thought of in the three years of this damn disease"
     
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  7. Kalliope

    Kalliope Senior Member (Voting Rights)

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    Thanks, @Luther Blissett Never seen that site before (they even translate to Elvish :nerd:)
     
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  8. Rick Sanchez

    Rick Sanchez Established Member (Voting Rights)

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    Couldn't agree more.
     
  9. Adelheid

    Adelheid Established Member

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    Thank you for posting and for translating @Kalliope and @Helen . I cannot imagine remotely how you did this:thumbup:
     

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