1. Guest, the 'News in Brief' for the week beginning 12th April 2021 is here.
    Dismiss Notice
  2. Welcome! To read the Core Purpose and Values of our forum, click here.
    Dismiss Notice

Investigating subjective experiences of cognitive difficulties and objective measures of cognitive functioning in adolescents who had EBV, 2020, Rødø

Discussion in 'PsychoSocial ME/CFS Research' started by Tom Kindlon, Aug 25, 2020.

  1. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

    Messages:
    1,522
    Likes Received:
    14,514
    via Dr. Marc-Alexander Fluks

     
  2. rvallee

    rvallee Senior Member (Voting Rights)

    Messages:
    6,003
    Likes Received:
    48,646
    Location:
    Canada
    Doesn't seem like they chose relevant cognitive tests. Or relevant participants. They nearly all show almost identical performance with healthy controls. I can't even do the easiest tasks of a profession I was highly skilled at and did for well over a decade, things I would be able to do even very drunk and was professionally trained on. They're clearly not testing the right things, the differences should be very obvious.
    The tests seem relatively pertinent so I assume the issue was with the participants. Some of the tests take nearly 1h to take and there are several of them. I can barely fill in a disability form asking basic questions that I know intuitively, one that a healthy person would take about 15 minutes to fill (I'm fortunate that where I live those forms are fairly short, thankfully). I abandon at least half of the research questionnaires I begin because they are simply too demanding, even though they actually aren't.
     
    Peter Trewhitt, alktipping and Caesar like this.
  3. Kalliope

    Kalliope Senior Member (Voting Rights)

    Messages:
    4,046
    Likes Received:
    41,155
    Location:
    Norway
  4. Hutan

    Hutan Moderator Staff Member

    Messages:
    13,114
    Likes Received:
    53,836
    Location:
    New Zealand
    That abstract has to be read really carefully - distinguishing the subgroup with CFS from the broader group with chronic fatigue or CFS after EBV.

    On objective measures, the CFS subgroup was worse than the broader group with chronic fatigue or CFS.
    As @Michiel Tack says in that tweet, this is evidence that researchers need to carefully choose their sample. CF and CFS are not the same.

    Out of 200 adolescents with an EBV infection followed for 6 months. 5 participants dropped out. so, out of the 195 people, 91 had chronic fatigue at 6 months. That seems incredibly high (47%).
    The chapter on the causes of ME/CFS is enough to make you weep. They quote Pedersen:
    and settle on the 'sustained arousal model'
     
    Last edited: Aug 26, 2020
    Simon M, Sly Saint, Trish and 5 others like this.
  5. Sean

    Sean Senior Member (Voting Rights)

    Messages:
    3,093
    Likes Received:
    25,753
    The conceptualization of fatigue from an understanding of sustained arousal has provided the framework applied in the overall CEBA project.

    Now there's a name I wish to never hear again. They have done terrible harm. :grumpy:
     
    rvallee, Amw66 and Hutan like this.
  6. Aslaug

    Aslaug Moderator Staff Member

    Messages:
    809
    Likes Received:
    4,488
    Since it's part of CEBA I'm not surprised they went with the sustained arousal model. :/

    I do wonder when they (CEBA project, not this particular thesis) decided to look at both CF and CFS. In the music study they include patients with CF who "if having additional symptoms" could also be diagnosed with CFS, even if the protocol states they were interested in those who already had developed CFS.
     
    Kalliope and Sean like this.
  7. James Morris-Lent

    James Morris-Lent Senior Member (Voting Rights)

    Messages:
    849
    Likes Received:
    6,313
    Location:
    United States
    If 'sustained arousal' - taken to mean something in the range of what one might reasonably intuit it to be implied to mean in the given context - is the cause, one wonders why there is a definitive lack of treatment success with any of the wide variety of sedative and anxiolytic drugs available.
     

Share This Page