Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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Sweden: 1177.se has changed their info on ME/CFS

Discussion in 'General ME/CFS Discussion' started by mango, Jul 10, 2016.

  1. mango

    mango Senior Member

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    The Swedish medical information website 1177.se Vårdguiden recently changed their info on ME/CFS.

    http://www.1177.se/Uppsala-lan/Fakta-och-rad/Sjukdomar/MECFS/

    1177 is one of the main (the main?) sources for medical info in Sweden, and is used by “everyone”, e.g. patients, journalists, healthcare staff, authorities etc.

    The info on 1177 is provided by the county councils (”landsting” in Swedish: the self-governing local authorities/administrative subdivisions that are responsible for the public health care system).

    I haven’t compared all of it in detail (yet), but what I’ve read so far is making me feel very disappointed and irked :grumpy: The previous version was far from perfect, but at least it got several hugely important points across in a very clear and unambiguous way.

    Some of what has been removed are these two crucial sentences:

    (sloppy translation: ) Long-term reduction in functional capacity may lead to substantial and permanent reduction of capacity for work, or difficulties fulfilling school attendance as well as managing daily activities and personal care.

    As yet there is no cure for ME/CFS and the illness is considered lifelong.

    The following has also been removed:

    People with ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome) describe an extreme physical and mental exhaustion, often in combination with malaise. The Swedish term kroniskt trötthetssyndrom [literally ”chronic fatigue syndrome”] is actually a misleading phrase in this context and should not be confused with sleepiness.

    Also gone is the text about pharmacological treatments targeting the immune system, and a paragraph that talked about current research into the immune system, autoimmune and autoinflammatory processes etc...

    I’d say that the overall changes make it sound as if ME/CFS isn’t very serious at all, and there is a lot of focus on fatigue, depression etc. One big step back, sadly :( (Not everyone would agree with me, I’ve read some comments from PWME who think the new version is 'good' or 'great'.)

    The info on PEM and pacing is sorely inadequate (it was in the previous version too).

    There’s some new text added that I think is very odd/incorrect, for example this one:

    How much symptoms you get depends on whether you have received diagnosis, treatment and adjustments in an early or later stage of the illness.

    Also, I can’t help noticing that they’ve replaced the previous reviewer (a well-known biomedical ME/CFS specialist, highly appreciated by the patient community) with a dr that is known (and often criticised) for her psychosocial approach to ME/CFS…

    It would be very interesting to know who initiated these changes, and why…
     
    Last edited: Jul 10, 2016
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  2. Snow Leopard

    Snow Leopard Hibernating

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    Very disappointing!

    It is quite likely that there is some politics going on behind the scenes, I hope you can get some answers!
     
  3. Kati

    Kati Patient in training

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    That sounds horrible @mango so sorry :(
    I am hoping that more papers will come in the next few months which will provide further proofs that this isn't deconditioning. That one reviewers should be sent each and every new papers coming out, including the latest Hanson's microbiome paper.
     
  4. Kati

    Kati Patient in training

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    Sweden needs to join in the next #MillionsMissing global protest.
     
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  5. mango

    mango Senior Member

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    About treatments it says, in short:

    * Physical activity (don't over-exert yourself. find a level of activity that you can handle without feeling worse the day after)
    * CBT (for coping, improved quality of life)
    * Pharmacological treatments (anti-depressants if you're depressed. pain. sleep)
    * Vitamins (B12, but there's no research that says it's effective)
     
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  6. Marky90

    Marky90 Science breeds knowledge, opinion breeds ignorance

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    My guess is that they found it too depressing, so i guess the logic is that if you rewrite the facts,

    then the disease will change as well :D :D!

    I tried to write them, but they are closed until august 8
     
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  7. Valentijn

    Valentijn Senior Member

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    It's amazing how often practitioners ignore the "chronic" aspect, even when it's the first word in the friggin' name! But maybe even "CFS" is too negative for them, and they won't be happy until they can rename it to "Tractable Fatigue Syndrome" or similar.
     
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  8. sarah darwins

    sarah darwins I told you I was ill

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    I had a similar thought. More specifically, they probably think they're doing patients a favour, that making patients aware of the grim reality would put them more at risk of developing false illness beliefs yadda yadda
     
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  9. Bob

    Bob

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    "Having-a-super-duvet-day-with-your-beautiful-rainbow-unicorn-kitty-in-a-wonderful-sparkly-universe-syndrome"?
     
  10. Helen

    Helen Senior Member

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    I didn´t read the old version of the information, but I can´t see that the new text is dismissing ME/CFS or describing the disease or the symptoms in terms of being psychosomatic.

    I could give a lot of examples, but I think it´s better that you, who don´t read Swedish, get it translated with Google (hopefully it won´t be to many mistakes in it) and get your own opinion. Maybe I missed something, but I´m not worried about this text, on the contrary.
     
  11. JaimeS

    JaimeS Senior Member

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    :bang-head::bang-head::bang-head::bang-head:

    Having a :thumbsup::sleep: day w/yr :love::balloons::alien::cat:in a :smug::rofl::balanced: syndrome.

    The emojis make it even MORE cheerful, you see?

    -J
     
  12. rose1

    rose1 Guest

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    Thanks for the "having a super duvet....." and emojis. Sometimes it's just good to have a laugh about it :lol:. Otherwise it all gets a bit too tragic:nervous:
     
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  13. Snow Leopard

    Snow Leopard Hibernating

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    :love:
     
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  14. mango

    mango Senior Member

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    Having gone through the text in detail and compared it to the earlier version (published in April 2014), I'm even more irked...

    All of the following have been deleted(!) from the list of symptoms:
    • Exhaustion
    • Flu-like feeling
    • Fever
    • Muscle pains
    • Neurological problems
    • Frequent infections
    • Memory problems
    • Worsening of symptoms after exertion (now it only says malaise after exertion)
    • Unrefreshing sleep
    Re: diagnosis, the sentence saying that the symptoms have to be "new and unexplained" has also been removed.

    A few more things that have also been deleted:
    • Prevalence estimate numbers
    • Reference to "post-viral fatigue"
    • That there are no diagnostic tests
    • Prognosis seems to be better for children and adolescents
    • All references to "long-term reduction in functional capacity"
    • 'In contrast to utmattningssyndrom*, studies have not been able to show that it's possible to cure ME/CFS patients with medical or psychological treatments.'
    *) Utmattningssyndrom, I'm not sure if there's an English equivalent for this? It's a quite common psych diagnosis, an aspect of the "chronic fatigue" umbrella: literally "exhaustion syndrome", often called "burnout" or "exhaustion-depression". It's usually defined as a reaction to severe stress, an adjustment disorder, or a stress-related psychological disorder (especially work related stress) due to maladaptive stress reactions and/or working too much/hard.

    Also, I don't like how many of the changes have an underlying subtle BPS smell, e.g. the words "limited" and "limitations" have been replaced with words such as "different" and "changes"...

    A few new symptoms added: orthostatic intolerance (thank you!), low-spiritedness and reduced stress tolerance.

    :grumpy:
     
  15. JaimeS

    JaimeS Senior Member

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    'Burnout' sounds like a good synonym. This sure does smell like BPS!

    'Low-spiritedness'. Geez. That makes me feel low-spirited... ;)

    -J
     
  16. Valentijn

    Valentijn Senior Member

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    Burnout is a widely used diagnosis here in the Netherlands too. ME is often conflated with it because every disease which involves exhaustion must actually all be the same disease, or something :rolleyes: So a "fatigue" clinic treated me like I had burnout, and just needed some pregnancy or a nice walk to snap out of it.

    I recall Wessely having co-authored an ME/burnout paper with some of the Dutch psychobabblers some years ago.
     
  17. Effi

    Effi Senior Member

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    'Just get a tad pregnant and you'll be well again!' :rofl: :cautious:

    Burnout/ME/CFS/CF conflation over here too. The burnout label can be anything from a two week absence from work due to high workload (more like taking a breather), to many years of not being able to function and having obvious immune related symptoms and maybe never getting 100% better. It's ridiculous.
     
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  18. JaimeS

    JaimeS Senior Member

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    I remember that I wrote a CAP paper on work-related burnout -- basically a prof. review of the authors' work -- and I noticed some definite immunological symptomology folded into a basically empathetic review about how people sometimes need a break, etc, and how long-term health problems can result if they don't get one.

    -J
     

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