The 12th Invest in ME Conference, Part 1
OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
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Jason, Newton 2015: A Cross Cultural Comparison of Disability and Symptomatology Associated with CFS

Discussion in 'Latest ME/CFS Research' started by mango, Apr 24, 2015.

  1. mango

    mango Senior Member

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    Dr Leonard Jason's group's most recent article:

    Zdunek, M., Jason, L. A., Evans, M., Jantke, R., & Newton, J. L. (2015). A cross cultural comparison of disability and symptomatology associated with CFS. International Journal of Psychology and Behavioral Sciences, 5(2), 98-107

    http://article.sapub.org/10.5923.j.ijpbs.20150502.07.html

    Abstract
    Few studies have compared symptomatology and functional differences experienced by patients with chronic fatigue syndrome (CFS) across cultures. The current study compared patients with CFS from the United States (US) to those from the United Kingdom (UK) across areas of functioning, symptomatology, and illness onset characteristics. Individuals in each sample met criteria for CFS as defined by Fukuda et al. (1994). These samples were compared on two measures of disability and impairment, the DePaul Symptom Questionnarie (DSQ) and the Medical outcomes study 36-item short-form health survey (SF-36). Results revealed that the UK sample was significantly more impaired in terms of mental health and role emotional functioning, as well as specific symptoms of pain, neurocognitive difficulties, and immune manifestations. In addition, the UK sample was more likely to be working rather than on disability. Individuals in the US sample reported more difficulties falling asleep, more frequently reported experiencing a sudden illness onset (within 24 hours), and more often reported that the cause of illness was primarily due to physical causes. These findings suggest that there may be important differences in illness characteristics across individuals with CFS in the US and the UK, and this has implications for the comparability of research findings across these two countries.
     
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  2. PennyIA

    PennyIA Senior Member

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    OK... so the fact that doctors in the UK are even worse at ramming it down their patients throats that it probably isn't physical (which I don't believe, but that's what's happening) and the bigger difficulty in getting disability - means that those patients are less likely to believe themselves, more likely to push themselves harder (as they have to - to keep working and to feed themselves) - then subsequently have worse symptoms....

    Ummmm... I'm sorry - but does anyone else see a cause-effect that ought to be studied instead of assuming there's a difference in the illness itself?!
     
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  3. helen1

    helen1 Senior Member

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    Definitely. It jumped out at me too. @PennyIA
     
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  4. Sasha

    Sasha Fine, thank you

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    A bit of an odd study - I wouldn't have thought that anyone in the UK was being initially diagnosed via the Fukuda criteria so presumably this is a Fukuda subset of a NICE or Oxford bunch of patients.

    So this is basically Fukuda vs NICE/Oxford and nothing to do with differences in disease per se, it seems to me.
     
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  5. duncan

    duncan Senior Member

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    What was the purpose of this exercise? I mean, I know what the abstract reads, but, really?? Where did Jason expect, or want, this to lead him?
     
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  6. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    I think it is very interesting to see this comparison, but I agree that it is likely to reflect medical/social circumstances as much as disease. I think the study highlights the need for a denominator - i.e. how big was the population from which the patients were drawn. Is the disease worse in the UK, at least on certain features, or was the sample from a bigger population with only the worst cases coming to light. It is not clear that there is any clearly defined denominator here. Without that I think it is all speculation. Nevertheless, at least researchers are trying to make comparisons and collaborate.
     
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  7. Marco

    Marco Grrrrrrr!

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    Cross cultural? OK I know you folks drive on the wrong side of the road and all that but??
     
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  8. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    Maybe turning the wheel to the left is more tiring? But it does seem odd. Who would do a cross-cultural study of myasthenia gravis or lymphatic leukaemia? And I get a double take when patients are rated for 'disability' which seems to be what in the US we call 'benefits' (for disability in another sense).
     
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  9. SilverbladeTE

    SilverbladeTE Senior Member

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    Somewhere near Glasgow, Scotland
    What the twats (sorry I have little respect for such :p ) also forget also is the huge ENVIRONMENTAL differences between our nations
    and of course as noted by folks different cultural/support/welfare etc. America has lot of mental health problems due to the stress of a greedy dog eat dog system.

    If I lived in Arizona, I'd be less sick because dry heat helps me a lot, but Scotland is very damp dark and cold by comparison
    ergo, big difference in health!
     
  10. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    Actually, reading the conclusion section it rather seems that the authors very much agree with everyone on PR. Although the abstract says: 'These findings suggest that there may be important differences in illness characteristics across individuals with CFS in the US and the UK...' the conclusion basically says it's all the doctors' fault and PACE was dodgy. This really is a cross-cultural paper - about medical cultures and the UK system making people exercise too much.

    So full marks to @PennyIA, but actually they agree with you it seems!
     
  11. A.B.

    A.B. Senior Member

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    I suspect in the UK there is more of a culture of refusing to diagnose CFS when possible (and in the more severely affected this is harder), whereas in the US it's more of a garbage bin diagnosis.

    This is my impression from reading about the topic, so it could very well be wrong.
     
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  12. Scarecrow

    Scarecrow Revolting Peasant

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    In the UK, you'd expect the clinical diagnosis to be based on NICE, so this would be a Fukuda subset of NICE. But remember that PEM is not mandatory for Fukuda but it is a requirement of the NICE criteria. There wouldn't be many patients meeting NICE but not Fukuda.

    So in theory, all of the UK patients would have PEM but not necessarily all of the US patients. The US patients were 'self-identified' where as the UK patients were referred by their GPs to a specialist centre.

     
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  13. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    I rather like the idea of a Royal Virginia Infirmary!!! Somebody was a bit slack on the proof reading?

    I have a suspicion that trying to read the tea leaves in detail here may yield rather little. What I quite like is the subtext that it really is all tea leaves. The disease itself is happily trotting off down the corridor - unexplained - while everyone is looking at the way doctors interpret it.
     
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  14. Sasha

    Sasha Fine, thank you

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    It's a pity that the subtext doesn't come through in the abstract. I read the abstract as saying that patients were selected in each country using the same criteria and that the disease is different in the two countries, and I thought that the implication was the patients were influenced by the different cultures of the two countries to have different symptoms.
     
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  15. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    I wonder if even the implications are tea leaves. As you well know Sasha, if you get five people together to write a paper and different people suggest different sentences and then you try to join it all up it can be a bit like a game of consequences (or it could be if you don't argue about it enough). The authors of this paper are quite diverse in their cultural background. Maybe this is a cross-cultural game of consequences paper. But maybe they wouldn't play consequences in the US of A?
     
  16. Sasha

    Sasha Fine, thank you

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    Don't know what to make of it, really - and my interpretation may just be through rather defensive goggles, imagining how the abstract will look to people who take a BPS view of ME/CFS. Or, as you say, I've become a tea-leaf reader. :(
     
  17. SOC

    SOC

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    Your broad generalization without any evidence seems to be in conflict with the results of this paper.
    You might want to rethink your prejudices. It seems mental illness is more of a problem in the UK, not the US.

    I suspect the reality is that overall levels of mental health problems are essentially the same in the US and the UK. This paper indicates higher levels of mental health problems in UK CFS patients, which is probably the result of either misdiagnosis of mental illness as CFS in the UK via the Oxford Criteria or higher levels of emotional and medical abuse of ME/CFS patients in the UK, and is not indicative of overall levels of mental illness between the two nations.
     
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  18. SilverbladeTE

    SilverbladeTE Senior Member

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    Exactly how many murder-suicides or spree killings does America have per annum compared to the UK?
    Exactly how many mental patients (or any kind of patient) not get treated due to poverty in the USA?
    How many folk are living in severe poverty in the USA?
    What is the rate of psychiatric prescriptions in the USA?
    etc
     
  19. Valentijn

    Valentijn WE ARE KINA

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    NICE diagnosis using Oxford would not just include many non-ME patients, it would actively exclude many ME patients. Oxford requires that fatigue be the primary symptom, which is usually not the case for ME patients - PEM is the primary symptom, with OI often coming in close behind it at 2nd place.

    So the Fukuda and Oxford patients could overlap for those with primary fatigue, but would otherwise be expected to have little in common.
     
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  20. jimells

    jimells Senior Member

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    I know how my neurologist would view this study, and I agree with him: how does this research inform clinical treatment decisions? As a result of this study, what is there to treat, and how?

    I'm not seeing it.
     
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