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2017: CFS/ME symptom-based phenotypes and 1-year treatment outcomes in two clinical cohorts of adult patients- Crawley/Knoop/Collin

Discussion in 'PsychoSocial ME/CFS Research' started by Esther12, Nov 9, 2017.

  1. Esther12

    Esther12 Senior Member (Voting Rights)

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    http://www.jpsychores.com/article/S0022-3999(17)30841-3/pdf

    posted by @Sly Saint in another thread, so it's getting it's own thread here.
     
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  2. MEMarge

    MEMarge Established Member (Voting Rights)

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    How does this stuff get published?
     
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  3. Esther12

    Esther12 Senior Member (Voting Rights)

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    I'm not that interested in the specifics of their subgroupings, so while I pulled out some bits that interested me, it's going to be missing the details of that stuff. This was just done on a glance while eating breakfast, so I might have made errors.

    It's all done on self-report of symptoms, so of fairly limited interest. I'm sure I did find self-reported CGI follow-up results for an NHS homeopathy clinic years back... maybe it would be funny to compare them?

    They only had follow-up data for about half of participants:

    "12-month follow-up
    data were available for 416 (45.3%) UK and 912 (65.5%) NL patients. UK patients lost to
    follow-up were slightly younger than those who had follow-up data (mean 39.6 vs 42.1 years,
    p=0.005) but there were no differences in sex or baseline fatigue and physical function. Dutch
    patients lost to follow-up were slightly older than those who had follow-up data (mean 38.2
    vs 36.7 years, p=0.02), were more likely to be male (28.8% vs 23.9%) and had worse baseline
    physical function (mean 54.0 vs 58.4, p<0.001) but there was no difference in baseline
    fatigue."​

    Their results for all those they had follow-up data on:

    "Overall changes in health were broadly similar in the two cohorts: 27.6% of UK
    patients reported their health to be very much or much better, 63.5% reported little or no
    change, and 8.9% said that their health was worse, compared with 39.2%, 56.1%, and 4.7%
    of Dutch patients classified as much better, unchanged or worse, respectively."​

    I could not see equivalent data for the different sub-groups they identified.

    I'd also prefer to have them broken down more than that, to different CGI scores (1-5), but couldn't see that in their tables. Given the problems with self-rated CGI, dropouts, etc, the data wasn't going to be very useful anyway, but it would be better to make it available.

    Edit: This is under table 1, and it was confusing that they dropped reference to 'very much better' in places:

    "In UK patients, Clinical Global Impression scale, where ‘Much better’ = “Very much better” or “Much better”, ‘Worse’ = “Very much worse” or “Much worse” or ’Unchanged’ = “A little better”, “No change” or “A little worse”; in Dutch patients, change in CIS20-R fatigue score, where ‘Much better’ = score <35 and change > 7, ‘Worse’ = change < 0, ‘Unchanged’ = all other responses"​

    They also say:

    "For UK patients, we relied on patients’ self-reported
    impression of their overall improvement in health, and for Dutch patients we calculated a
    reliable change index."​

    Results:

    "Adjusted multinomial odds ratios (MOR) showed that, compared with oligosymptomatic
    patients, UK patients who were polysymptomatic were 58% less likely to report their health
    as being ‘much better’ (MOR=0.42 (95% CI 0.20, 0.89)) and patients with predominantly
    pain-only symptoms were 65% less likely (MOR=0.35 (0.15, 0.82)) to report substantial
    improvement. Similar effects were seen in polysymptomatic and pain-only Dutch patients,
    who were respectively 51% (MOR=0.49 (0.31, 0.80)) and 42% (MOR=0.58 (0.39, 0.88)) less
    likely to be classified as being much better. There were no associations between phenotypes
    and substantially worse health, although estimates were imprecise because of the relatively
    small numbers of patients whose health had deteriorated."​

    Some of their description of limitations:

    "The main limitations of our study are that improvement in
    health one year after treatment was measured differently in UK and Dutch patients, and the
    UK cohort had high losses to follow up. For UK patients, we relied on patients’ self-reported
    impression of their overall improvement in health, and for Dutch patients we calculated a
    reliable change index."​

    They say this on their sub-grouping (which always sounded a bit of a botch to me):

    "Our original study in UK patients found a 6
    class solution based on nine symptoms (the five in the present study, plus dizziness, nausea,
    and palpitations) [8]. The 3-class solution in the present study arose because we wanted to
    compare associations of phenotypes with treatment outcomes between the UK and Dutch
    cohorts. The small number of symptoms common to both cohorts, and the smaller size of
    these cohorts relative to the original UK cohort, precluded replication of the 6-class solution.
    The simpler 3-class solution shares key features with the 6-class solution, namely the poorer
    baseline health status and more likely occurrence of comorbidities among polysymptomatic
    patients."​

    No citing of Wilshire here!:

    "Our outcomes were defined to differentiate patients who had improved, rather than
    attempting to define ‘recovery’, which is a complex (and controversial) topic in CFS/ME [22
    24]"

    [22] J.L. Adamowicz, I. Caikauskaite, F. Friedberg, Defining recovery in chronic fatigue syndrome: a critical review, Qual. Life Res. 23(9) (2014) 2407-16.
    [23] B. Brown, K. Huszar, R. Chapman, 'Betwixt and between'; liminality in recovery stories from people with myalgic encephalomyelitis (ME) or chronic fatigue syndrome (CFS), Sociol. Health Illn. 39(5) (2017) 696-710.
    [24] P.D. White, T. Chalder, M. Sharpe, Comment on: 'Reports of recovery in chronic fatigue syndrome may present less than meets the eye', Evid Based Ment Health 19(1) (2016) 32​

    There are some complexities around the definition of recovery in CFS/ME, but you'd have to be a right thicko to fall for White's BS.

    Discussion section takes a surprising term, where they seem to promote arguments in favour of lumping together an ever wider group of patients for MUS services.

    "Our findings show that patients with
    different phenotypes have different prognoses. From a CFS/ME specialist service
    perspective, this might suggest the importance of individualised treatment, for example, for
    patients with pain symptoms, who have less favourable treatment outcomes [28-30].
    However, from a broader healthcare perspective, it could be argued that a more
    comprehensive framework of clinical management of patients with symptom-based
    diagnoses/functional somatic symptoms is needed [31, 32]. From this perspective, the setting
    of our study within the boundaries of specialist CFS/ME services (well established in the UK
    and the Netherlands, much less so in most other countries) could be perceived as a limitation.
    Whether multiple symptoms and functional somatic symptoms delineate subtypes of CFS/ME
    [33-35], whether CFS/ME is a subtype of an umbrella syndrome [36], or whether distinct
    syndromes such as CFS/ME and fibromyalgia simply occur comorbidly [37] remains an open
    question. The answer has major implications for clinical research and practice, including the
    design of clinical trials [38] and the role of illness severity rather than symptomatology in
    predicting treatment outcomes [39]."​

    Very weird, considering what the rest of their paper was saying, but at this point, I think that creating amorphous MUS services is their best approach for promoting their own self-interests and undermining any sort of patient advocacy.

    They don't seem to give data on the % giving different self-rated outcomes for the three sub-groups they had identified, and that seems odd to me. Maybe it could be calculated from table 2, the formatting of which is currently a mess.

    Table 2 also has % of patients falling into the different sub-groups in the Dutch and UK groups, and they're quite different. I don't recall them commenting on this:

    UK adult CFS/ME patients
    Class 1 Oligosymptom
    (15.5%)
    Class 2 Pain only
    (35.5%)
    Class 3 Polysymptom
    (49.0%)

    Dutch adult CFS/ME patients
    Class 1 Oligosymptom
    (22.6%)
    Class 2 Pain only
    (51.9%)
    Class 3 Polysymptom
    (25.4%)​
     
    Last edited: Nov 9, 2017
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  4. NelliePledge

    NelliePledge Senior Member (Voting Rights)

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    As a pediatrician what is EC doing involved on adult research. She says Adult and pediatric ME are different doesn't she

    Journal of Psychosomatic Research - says it all
     
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  5. Esther12

    Esther12 Senior Member (Voting Rights)

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    That journal does seem fairly consistently shit. (at least on ME/CFS/MUS/etc)
     
    Last edited: Nov 9, 2017
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  6. NelliePledge

    NelliePledge Senior Member (Voting Rights)

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    Appropriate place for this paper then ;)
     
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  7. Snowdrop

    Snowdrop Established Member (Voting Rights)

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    Maybe one day when we're more settled here we can come up with a system that scores these things. For now I'll volunteer the pink JPM for a two thumbs down score.

    I expect with the situation we find ourselves in (although rapidly changing thankfully) that there might need to be a score of 'makes my eyes bleed'.
     
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  8. Jan

    Jan Senior Member (Voting Rights)

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    Surely this research makes the UK services sound crap? After 12 months 72.4% of patients are the same or worse. They don't even have a clue what happened to over half of them, as, as we already know you get dismissed once you've done your cbt/get.

    So to me this shows that for 72.4% of patients it's pointless doing get/cbt and that nobody cares what happens after you've done your cbt/get course. Have I got that right?
     
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  9. Esther12

    Esther12 Senior Member (Voting Rights)

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    And there's no control group, people tend to be positive about worthless things like homeopathy and, as you say, over half the UK sample went missing anyway.

    The UK's CFS services have soaked up huge amounts of money over the years, and seem to have done almost nothing of value for patients. Their primary impact seem to have been to have promoted a misleading impression that their are already effective treatments available (leading to recovery of 30-40% of patients if Crawley is to be believed!) if only patients could be convinced to engage with them.
     
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  10. Wonko

    Wonko Senior Member (Voting Rights)

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    Given that this seems to be the only possible rationale for their existence, it seems likely that this is the case, that the UK's CFS services are not in existence to treat patients, at all, but to provide something to point at to say, look, we've got effective treatments, we've done the bogus £5 million study, after suitable adjustments, to adjust for the fact they didn't work, it showed they work.
     
    Last edited: Nov 9, 2017
  11. Jan

    Jan Senior Member (Voting Rights)

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    The only people they actually help are probably those who are misdiagnosed and never had ME.
     
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  12. Wonko

    Wonko Senior Member (Voting Rights)

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    This is clearly untrue. They also help lots of other people, who otherwise may not have a paypacket. :p
     
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  13. Jan

    Jan Senior Member (Voting Rights)

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    Lol, I obviously wasn't including those profiting from our misery.
     
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  14. MEMarge

    MEMarge Established Member (Voting Rights)

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    So is this the type of paper that we'll see if crawley gets anywhere with MEGA!!!! subgroups/phenotypes.....
     
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  15. Jan

    Jan Senior Member (Voting Rights)

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    The woman can't even diagnose ME, let alone research phenotypes. Our knowledge of ME was further advanced before the psyco crew muddled it in with every other sort of chronic fatigue.
     
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  16. Jan

    Jan Senior Member (Voting Rights)

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    ''it could be argued that a more
    comprehensive framework of clinical management of patients with symptom-based
    diagnoses/functional somatic symptoms is needed''

    No shit. Patients have been trying to tell you for years that your one size fits all get/cbt does not work for most and harms many. Try listening to your patients instead of wasting millions of research $$
     
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  17. Solstice

    Solstice Established Member

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    Very doubtfull. If Pace showed us anything it's that CBT/GET doesn't help any form of fatigue.
     
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