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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Neurocognitive improvements after best-practice intervention for chronic fatigue syndrome (Cvejic)

Discussion in 'Latest ME/CFS Research' started by Dolphin, Jun 22, 2016.

  1. Dolphin

    Dolphin Senior Member

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  2. Dolphin

    Dolphin Senior Member

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    There is no control group in this study. This leaves the big question about whether these improvements can be put down to the intervention or instead whether they could be explained by training effects (being more familiar with the tests), the passage of time, et cetera.

    This is what the authors say on this for what it is worth.

     
    Last edited: Jun 22, 2016
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  3. Bob

    Bob

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    25 fatigued patients who undertook 12 weeks of cognitive training improved their cognitive scores in cognitive tests after the training. And no control group. Now that's what I call a useful and rigorous research program putting public money to best use.
     
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  4. Snowdrop

    Snowdrop Rebel without a biscuit

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    Yet another good reason for those of us with more than just fatigue to call our illness something other than cfs.
     
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  5. barbc56

    barbc56 Senior Member

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    What is involved with best standard practice? CBT/GET?
     
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  6. Dolphin

    Dolphin Senior Member

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    Yes.

     
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  7. duncan

    duncan Senior Member

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    Only 12 weeks before repeating the same tests?

    12 weeks is nothing. Watch an episode of Game of Thrones. Will you recall elements of that episode 12 weeks later as you watch a repeat of it?

    This is not enough time. Subjects will remember. The relatively recent exposure will elevate their scores. Many of these metrics are based on prompting and recall.

    I am surprised a neurocognitive testing expert has not spoken up yet.
     
    Last edited: Jun 22, 2016
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  8. Hutan

    Hutan Senior Member

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    Exactly.

    The CFS patients had 11 or 12 weeks of cognitive training between the two assessments. The healthy volunteers did a different (although reportedly comparable) cognitive task in a test-retest scenario (ie presumably no training in between the two tests) with two weeks between the test and re-test. So, are we surprised the CFS patients' performance improved rather more than that of the healthy volunteers?

    The stupidity of these studies and their conclusions continues to amaze me.
     
    Last edited: Jun 22, 2016
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  9. Woolie

    Woolie Gone now, hope to see you all again soon somewhere

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    Yea, first thing I noticed. WTF? How does this stuff get published?
     
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  10. barbc56

    barbc56 Senior Member

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    That's what I was afraid of. Grrrrrrrr!

    Does this apply to the states? Sorry, rather foggy and can't find this info. From the WHO?
     
  11. barbc56

    barbc56 Senior Member

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    Okay, found this for the states. It's the CDC me/cfs under management but I'm not sure if that is considered best practice. While cbt and get are mentioned, there are also other things.

    http://www.cdc.gov/cfs/management/index.html

    There is a PDF but I can't access it nor post the url from my phone. It's titled toolkit for providers.
     
  12. alex3619

    alex3619 Senior Member

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    This should be considered a pilot study. In order to evaluate it we need at least two, not one, control groups. We need a no intervention group, and we need a group receiving only the cognitive training. I have not read the full study.

    The use of objective measures is commendable ... but they must expect us to be skeptical given prior failures, including major methodological failures, in this kind of research.

    This caveat puts a damper on the whole thing as well:

    I have major memory deficits right now. Yet when tested with a very simple memory test for dementia I aced it. If the neurocognitive testing did not examine the kinds of deficits expected in ME or CFS then its largely irrelevant. Nobody has yet put together a validated and public neurocognitive battery focusing on the typical neurological deficits found in ME or CFS. I am aware this kind of testing can be done privately, but this is not common, and we need some data on how to conduct this kind of testing, which might come from one or more of the big data studies currently underway or in planning.

    Another confound would be duration and severity of illness. Most of these kinds of intervention studies are for moderate term patients with mild to moderate severity. Long term patients are usually ignored, and the same for severe patients.

    I am also concerned that there is a presumption that daily neurocognitive tasks like what they describe are presumed to have stable results over time. I have been doing those kinds of things for decades. I still have long periods where my cognition sucks, and other times when it is not so bad (though not recently).

    There is also an issue of short term neurocognitive performance after rest versus after exertion and delayed problems after exertion.

    I also want to know about effect size, not just p values.
     
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  13. Justin30

    Justin30 Senior Member

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    When are they really gonna start selecting people that represent what ME.

    CFS shoulf be taken away from the connection of ME immediately so science can actually start making strides.
     
  14. alex3619

    alex3619 Senior Member

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    I have read the abstract a few times but still have no clue over cohort selection. It is indeed critical to know this when trying to interpret the study. The use of "CFS" rather than "ME/CFS" or even "CFS/ME" suggests that cohort selection was especially poor. What does "well-characterized CFS" actually mean?
     
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  15. Justin30

    Justin30 Senior Member

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    Maybe people that are sleepy after they work a full days work, take care of there kids and Participate in a normal life.
     
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  16. Art Vandelay

    Art Vandelay Senior Member

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    It's by Andrew Lloyd. Say no more.
     
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  17. Valentijn

    Valentijn WE ARE KINA

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    Full text from sci-hub: http://www.sciencedirect.com.sci-hub.cc/science/article/pii/S0010440X15302492

    They cite to Fukuda Criteria, but have offered up a very strange interpretation of it:
    9 of the 25 patients were on antidepressants, and had been for a while, which is a bit unusual since a lot of ME patients don't tolerate them. People taking meds for autonomic symptoms were excluded, but SNRIs were classified only as antidepressants, despite the impact norepinephrine has upon the autonomic nervous system.

    Length of illness was as low as 24 weeks (6 months) in some patients, meaning they were barely ill long enough to be diagnosed. Though average was about 5 years. Some were drinking up to 6 units of alcohol per week, which is pretty remarkable in a disease where alcohol intolerance is a nearly universal symptom. Some patients doing up to 15 hours of moderate intensity exercise per week (3.8 hours on average) is also suspicious in a disease defined by a pathological intolerance of exertion.

    There's no indication that they adjusted for making multiple comparisons in the before-and-after measurements. Though they did adjust for multiple comparisons in comparing the end results to each other to see which outcomes correlated with each other. So it's unlikely there was much (if any) actual statistical significance.
     
    Last edited: Jun 23, 2016
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  18. A.B.

    A.B. Senior Member

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    Short illness duration (in some patients), permissive Fukuda criteria imply that regression to the mean could be particularly prominent in this sample. So the lack of a control group is particularly problematic.
     
    Last edited: Jun 23, 2016
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  19. sarah darwins

    sarah darwins I told you I was ill

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    Is it me or is junk science not what it used to be? They don't even seem to be pretending properly any more.
     
  20. A.B.

    A.B. Senior Member

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    There is a positive aspect to this study. It acknowledges objective neurocognitive deficits, and touches the issue of discrepancies between subjective and objective measures. Which suggests that at least some of the people promoting psychosomatic explanations no longer feel that these issues can continue to be ignored.
     
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