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Living with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): A description of adult experiences, 2020, Essebo & Joqi

Discussion in 'Psychosomatic research - ME/CFS and Long Covid' started by Dolphin, Jan 29, 2020.

  1. Dolphin

    Dolphin Senior Member (Voting Rights)

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    From: Dr. Marc-Alexander Fluks


     
  2. Trish

    Trish Moderator Staff Member

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    Google translation showing up its shortcomings.
     
  3. mango

    mango Senior Member (Voting Rights)

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  4. Anna H

    Anna H Senior Member (Voting Rights)

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    I have read the thesis in its enterity in Swedish. It's to long to translate, but I have translated some statements that I find troublesome or outright erroneous :







    We are currently discussing in a Swedish ME-group if we should get in contact with the educational institution and the student's tutor, to alert them to the factual errors in the thesis.

    Since this will be read by people soon to become nurses, coming in direct contact with patients, their knowledge surely spreading to colleagues etc, isn't it important that they aren't misinformed, giving potentially harmful advice?

    Some people in the ME-group think this is petty and a waste of energy though, because it's just a masters thesis.
     
    rainy, Sean, rvallee and 8 others like this.
  5. Invisible Woman

    Invisible Woman Senior Member (Voting Rights)

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    If you have the resources then it might be worth contacting the tutor. If it works out then the next batch might of nurses might be a little better informed.

    Like you @Anna H I can see issues with every quote in your post. Especially -

    I completely fail to see how a nurse telling you about healthy eating and that regular meals are important are going to overcome being unable to go food shopping or shop online or prep and cook food. o_O
     
    rainy, JemPD, Sean and 7 others like this.
  6. mango

    mango Senior Member (Voting Rights)

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  7. rvallee

    rvallee Senior Member (Voting Rights)

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    Ehhhhhh what? Maybe the same way cocaine is a relaxant.

    Really tired of seeing pacing framed as a treatment. Literally no one but deniers have ever pretend it is. It's hard enough to make progress on a complex problem, having people sow confusion about everything is maddening.
     
  8. Sean

    Sean Senior Member (Voting Rights)

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    If you want a single example of how utterly disconnected these clowns are from the reality of our lives, their 'advice' on sleep and naps is a good one.

    This stuff is nothing more than a tacit admission that they have no practical useful advice to offer us, and are refusing to face up to that cold hard fact.

    Even after more than 35 years of dealing with this shit, it still amazes me the lengths they will go to in order to deny they know nothing, and are, if fact, grossly incompetent and doing serious harm.
     
  9. Anna H

    Anna H Senior Member (Voting Rights)

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    Right!!! It looks to me as if they don't even understand what they're saying themselves, if they did, at least it should say "pacing" instead of "PACE" . That sentence doesn't make any sense.

    Exactly how I feel about this, it only creates confusion.
     
  10. Anna H

    Anna H Senior Member (Voting Rights)

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    Sweden
    I can't see that helping either, and it's so patronizing, implying we are to ignorant to know what's good for us.
    Thanks for the support @Invisible Woman :)
    We're scraped a bit thin at the moment but trying to put something together.

    @Sean I totally agree!

    Thanks, I really value your input !
     
    Last edited: Feb 3, 2020
  11. Milo

    Milo Senior Member (Voting Rights)

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    1,901
    Chronic disease management is not treatment and i agree with you @rvallee

    What i want my health care system to do is to look for treatments that are of value to me, which means that are likely to modify my disease. All that management stuff is aimed at adopting behaviors which falls within their guidelines on how to cope and manage this disease, which they usually like to lump with other diseases as well. Seemingly the understanding of the patients going through the program is that you must pace, do yoga or tai chi, eat what they tell you, take the supplements they tell you go to bet at 9PM and up by 7 AM, and you must practice mindfulness religiously. And if you fail to do those, then you are deemed non-compliant and there is nothing they can do for you. This is not medicine, it is CBT in disguise.

    We all deserve so much better.
     
  12. Forbin

    Forbin Senior Member (Voting Rights)

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    Can you really be engaged in a strategy to conserve energy while at the same increasing the amount of energy you expend? I feel like a law of thermodynamics is being violated here.
     
  13. rvallee

    rvallee Senior Member (Voting Rights)

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    Ooh I didn't even make the connection and I think you nailed why they did, they think PACE studied pacing. Which, of course, any reasonable person would think and the whole point of this Orweillian acronym.

    Which... uh... :facepalm:
     
  14. Forbin

    Forbin Senior Member (Voting Rights)

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    Also kind of Orwellian (or at least ironic) is that, in Latin, PACE means "with peace." It's usually used as an expression of deference to a respected person's contrary opinion, sort of like starting a sentence with "No offense..."

    So... "Pace Mike, but I think this study* is for the birds."

    [*PACE]
     
    Last edited: Feb 4, 2020
  15. Sean

    Sean Senior Member (Voting Rights)

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    Haven't you heard? 2 + 2 = 5 now.
     

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