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The Lonely, Isolating, and Alienating Implications of ME/CFS. Boulazreg & Rokach. 2020

Discussion in 'PsychoSocial ME/CFS Research' started by John Mac, Oct 20, 2020.

  1. John Mac

    John Mac Senior Member (Voting Rights)

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    Full title:
    The Lonely, Isolating, and Alienating Implications of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome



    https://www.mdpi.com/2227-9032/8/4/413



     
    andypants, Hutan, Marky and 4 others like this.
  2. Marky

    Marky Senior Member (Voting Rights)

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    "Catastrophizing, defined as the general tendency to assumethatthe worst-case scenario will happen, presents challenges for the overly cautious ME/CFS sufferer. Pessimism, a fear of movement, and an intense irrational fear of expecting the worst to occur leads these individuals to isolate in an attempt to protect themselves from potentially negative exposure. However, this approach to confine and stay away from social and recreational pursuits is counterproductive; in fact, studies investigating the implications of social deprivation have shown that it instead increasespain perception [33,34]. Thus, kinesiophobia and catastrophizing may create a sort of negative feedback loop where an individual, wishing to mitigate symptoms, stays at home to “protect” themselves, only to have significant distress and an increase in pain."

    Yea im not reading any more of this stigmatizing trash
     
  3. shak8

    shak8 Senior Member (Voting Rights)

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    A literature review with a ton of misinformation and distortion. Love the method: key word search of titles. Whoa, amazing.

    Never ceases to amaze me how removed from science and how akin to religion psychology can be.

    Funny how we have a thread on alienation and this article is yet another example of it.
     
  4. NelliePledge

    NelliePledge Moderator Staff Member

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    UK West Midlands
    Boulazreg and Rokach

    Armed forces slang provides me with a term to describe your efforts - bumf
     
    alktipping, andypants and shak8 like this.
  5. rvallee

    rvallee Senior Member (Voting Rights)

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    Weird. Who could have known that discriminating against a disease had horrible consequences? Other than all the past and ongoing examples of the same thing done for the same reasons, obviously.

    Great idea to reinforce this discrimination by repeating obviously false tropes, this guarantees decades of work for this jobs program. 1) Malign, insult, gaslight and discriminate a disease into ostracization, 2) study the horribly iatrogenically-enforced isolation as if it were part of the illness, rather than the criminal negligence of maligning, insulting, gaslighting and discriminating us.

    In other news, casual drug use creates massive international drug industry, terrorism and extremely violent cartels capable of turning countries into chaos. Well, drug prohibition does but isn't it just the same? No? It isn't? Oh, well.

    I have no idea why this is part of the "Special Issue "ME/CFS – the Severely and Very Severely Affected"". Very insulting.
     
    cfsandmore, alktipping, Wonko and 3 others like this.
  6. MSEsperanza

    MSEsperanza Senior Member (Voting Rights)

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    betwixt and between
  7. Michiel Tack

    Michiel Tack Senior Member (Voting Rights)

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    2,751
    Location:
    Belgium
    They recently did a special issue on severe ME (this article is part of that special issues I think).

    Thought this was interesting, although the reference simply refers to the announcement of research funding for ME in Canada, so it doesn't really provide more info
     
  8. Andy

    Andy Committee Member (& Outreach when energy allows)

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    Hampshire, UK
    Merged thread

    Open access, https://www.mdpi.com/2227-9032/8/4/413/htm
     
    Last edited by a moderator: Nov 29, 2020
  9. Trish

    Trish Moderator Staff Member

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    I started reading this with interest and an open mind, but gave up when I'd read this paragraph:

    My bolding.
     
    alktipping, shak8, Simbindi and 15 others like this.
  10. Kitty

    Kitty Senior Member (Voting Rights)

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    FFS!

    I have literally never come across one of these patients with 'intense irrational fears' and 'kinesiphobia' in 40-odd years. I would be astonished if anyone has. ME patients are some of the most resilient people I've ever encountered, even though all – and I mean ALL – would really benefit from protecting themselves a whole lot more that they actually do.

    Yet another publication made for no reason other than to help someone hold onto their bloody salary, without the need to listen to and understand any of the patients they purport to be studying.
     
    alktipping, EzzieD, rvallee and 8 others like this.
  11. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    "Kinesiophobia is the most extreme form of fear of movement, and is defined as an excessive, irrational and debilitating fear of physical movement and activity resulting from a feeling of vulnerability to painful injury or reinjury, and it has been reported as a common feature of patients with CFS [18], fibromyalgia, .
    Fear-avoidance is said to play a role in the so-called deconditioning syndrome which can either be expressed in a weakened muscle strength, or disordered muscle coordination, during physical activity [16]."
    https://www.hindawi.com/journals/bmri/2013/580460/

    "There appears to be no association between exercise capacity and kinesiophobia in adult patients with CFS who seek treatment for their symptoms."
    https://www.archives-pmr.org/article/S0003-9993(04)00264-3/fulltext
     
  12. Barry

    Barry Senior Member (Voting Rights)

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    I'm beginning to think these BPS psychs are some of the most irrational people on the planet. Not just unscientific but completely gaga.
     
    Mithriel, Sean, alktipping and 9 others like this.
  13. Invisible Woman

    Invisible Woman Senior Member (Voting Rights)

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    Riiight. Santa is said to live at the North Pole with Mrs Claus and the elves. There's probably less evidence for the fear avoidance theory.
     
    Mithriel, alktipping, rainy and 7 others like this.
  14. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    I thought Mrs Claus had moved to their holiday home in Martinique having got fed up with the bananas going soft in the garage and reindeer milk with the muesli. But I couldn't find the paper just now.
     
    alktipping, rainy, FMMM1 and 7 others like this.
  15. Mij

    Mij Senior Member (Voting Rights)

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    5,245
    Perhaps the BPS crowd are suffering from alethophobia? :laugh:

    A fear or dislike of the truth; an unwillingness to come to terms with truth or facts.
     
    Mithriel, Sean, alktipping and 6 others like this.
  16. strategist

    strategist Senior Member (Voting Rights)

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    I suspect they have little contact with patients, and when they do, are unable to understand because they're trained to interpret what is being said according to rigid theories that don't have much to do with the real world. The theories being designed to create jobs and make psychs feel important rather than actually explain anything.
     
    Last edited: Nov 29, 2020
  17. Invisible Woman

    Invisible Woman Senior Member (Voting Rights)

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    Ah, you might well be right but were you aware they renamed the bungalow next door? They felt Martinique was more in line with their preferred lifestyle and Mrs C preferred it to Dunroamin. :laugh:
     
  18. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    Was that published in a reputable journal
    or the Lancet?
     
  19. shak8

    shak8 Senior Member (Voting Rights)

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    I'd like to do something to the authors to induce in them real kinesiophobia and fear of catastrophe.

    Ah, but that is my "idle" threat.
     
    alktipping, Kitty and Trish like this.
  20. cfsandmore

    cfsandmore Established Member (Voting Rights)

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    Have a cup of very low-quality evidence.
     

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