Severe ME Day of Understanding and Remembrance: Aug. 8, 2017
Determined to paper the Internet with articles about ME, Jody Smith brings some additional focus to Severe Myalgic Encephalomyelitis Day of Understanding and Remembrance on Aug. 8, 2017 ...
Discuss the article on the Forums.

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

    Messages:
    10,671
    Likes:
    28,172

     
    Woolie likes this.
  2. Dolphin

    Dolphin Senior Member

    Messages:
    10,671
    Likes:
    28,172
    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
    Woolie and Valentijn like this.
  3. Dolphin

    Dolphin Senior Member

    Messages:
    10,671
    Likes:
    28,172
    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.
     
    Kati, Simon, Hutan and 6 others like this.
  4. Dolphin

    Dolphin Senior Member

    Messages:
    10,671
    Likes:
    28,172
    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

    Messages:
    1,095
    Likes:
    3,447
    And here I thought that people learned from their mistakes....
     
    sarah darwins and duncan like this.
  6. duncan

    duncan Senior Member

    Messages:
    2,038
    Likes:
    4,465
    "...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.
     
    Little Bluestem and Hutan like this.
  7. jimells

    jimells Senior Member

    Messages:
    1,997
    Likes:
    6,099
    northern Maine
    Maybe the most important question regarding this "research" is: who approved the funding?
     
  8. Jenny

    Jenny Senior Member

    Messages:
    1,359
    Likes:
    496
    London
    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

    Messages:
    10,671
    Likes:
    28,172
     
    Little Bluestem and jimells like this.
  10. Dolphin

    Dolphin Senior Member

    Messages:
    10,671
    Likes:
    28,172
     
  11. jimells

    jimells Senior Member

    Messages:
    1,997
    Likes:
    6,099
    northern Maine
    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.
     
    Kati likes this.
  12. duncan

    duncan Senior Member

    Messages:
    2,038
    Likes:
    4,465
    @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.
     
    JaimeS and Mel9 like this.
  13. msf

    msf Senior Member

    Messages:
    3,188
    Likes:
    4,453
    It´s only discouraging if you expect more of them, which I don´t.
     
  14. Marco

    Marco Grrrrrrr!

    Messages:
    2,378
    Likes:
    3,174
    Near Cognac, France
    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

    Messages:
    641
    Likes:
    1,296
    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

    Messages:
    5,462
    Likes:
    19,549
    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?
     
    Mij and mango like this.
  17. lilpink

    lilpink Senior Member

    Messages:
    864
    Likes:
    5,451
    UK
    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'.
     
    Daisymay likes this.

See more popular forum discussions.

Share This Page