A New Decade of ME Research: The 11th Invest in ME International ME Conference 2016
Mark Berry presents the first in a series of articles on the 11th Invest in ME International ME Conference in London ...
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CFS symptom-based phenotypes in two clinical cohorts of adult patients in the UK and The Netherlands

Discussion in 'Latest ME/CFS Research' started by Dolphin, Jan 10, 2016.

  1. Dolphin

    Dolphin Senior Member

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  2. Dolphin

    Dolphin Senior Member

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    Collin 2015 Table 1 with citation.png
    Info on Collin 2015 Table 1 with citation - how symptoms defined.png

    UK

     
    Last edited: Jan 10, 2016
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  3. Dolphin

    Dolphin Senior Member

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    The PACE Trial authors previously claimed that these were the figures for the working age population. Following a letter in the Lancet, they admitted this was an error. Now we see it repeated again. And Peter White is one of the authors of this paper.
     
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  4. Dolphin

    Dolphin Senior Member

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    I would be interested in seeing the supplemental files. If anyone has access to them, please send me a private message.

    For example, perhaps they include data on the prevalence of the following:

    No overall figures for these are given in the main text that I can see and I don't think the overall prevalence figures can be calculated either from what is presented.
     
  5. Denise

    Denise Senior Member

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    And here I thought that people learned from their mistakes....
     
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  6. duncan

    duncan Senior Member

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    "...one of 6 symptom-based phenotypes associated with sex...."

    Please let them mean gender.

    Also, why did they spell out the number 1 as "one" - which is correct - but not the number 6?

    Yes, I expect a certain degree of accuracy. Details matter.

    I cannot begin to imagine what I would find if I bothered to read the entire study.
     
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  7. jimells

    jimells Senior Member

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    Maybe the most important question regarding this "research" is: who approved the funding?
     
  8. Jenny

    Jenny Senior Member

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    Most publications have a preferred style convention where the number 'one', where it does not refer to a particular statistic or metric, is spelled out, while higher values are written as numbers.
     
  9. Dolphin

    Dolphin Senior Member

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  10. Dolphin

    Dolphin Senior Member

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  11. jimells

    jimells Senior Member

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    It's discouraging to see UK authorities are still willing to fund such useless research.

    I doubt there will be much demand to see the data.
     
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  12. duncan

    duncan Senior Member

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    @Jenny, I didn't mean to sound so picky. A good rule of thumb, btw, is numbers one through nine are spelled out, anything two or more digits, e.g., 11, the number itself is appropriate. Either way, consistency can be a plus (although I am aware of Emerson's admonition about "a foolish inconsistency").

    My broader point is that a cavalier attitude to specifics can be reflective of the final product. Case in point would be a Lyme study I recently reviewed, where the authors referred to a group of patients that remained symptomatic as "a small subgroup" - even though they were alluding to over 35% of the study's population.

    A quality measurement of the results can sometimes be ascertained just by observing the authors' attitude to specificity and accuracy in secondary or even non-pertinent exercises.
     
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  13. msf

    msf Senior Member

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    It´s only discouraging if you expect more of them, which I don´t.
     
  14. Marco

    Marco Grrrrrrr!

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    Ditto. These are fairly commen complaints with the exception of 'Chronic Regional Pain Disorder' which I'm assuming means complex regional pain syndrome as there doesn't appear to be such as thing as Chronic Regional Pain Disorder.

    This is a much rarer condition with prevalance in the order of 26 per 100,000 compared to 300-500 for ME/CFS. At that rate we would expect around 2 cases from a cohort of 8400. Hardly worth mentioning you would think?
     
  15. Gijs

    Gijs Senior Member

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    Though i do find table 1 quite interesting. I think symptoms could be very important to separate subgroups. But the main symptoms PEM, Cognitive disfunction and sleep problems (together with orthostatic intolerance) can be objectified. Also you see 30- 40% of the CFS patiënts have palpitations this can be a different subgroup with bloodflow problems and POTS.
     
  16. Kati

    Kati Patient in training

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    There are other ways to subgroup our patient population. I am sure that I am preaching the choir but for the gist of it, here are my suggestions:

    1) by acute vs gradual onset.
    2) length of illness
    3) severity scale
    4) biological measures - NK cell function, bright cells, POTS, exercise test, MRI or whatever useful brain imaging, gut microbiome, etc?
     
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  17. lilpink

    lilpink Senior Member

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    This appears to make use of the National Outcomes Database for CFS/ME which has never had ethics approval to be used a part of 'research'. This IS 'research'.
     
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