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Jason, Newton 2015: A Cross Cultural Comparison of Disability and Symptomatology Associated with CFS

mango

Senior Member
Messages
905
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.
 

PennyIA

Senior Member
Messages
728
Location
Iowa
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?!
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
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.
 

Jonathan Edwards

"Gibberish"
Messages
5,256
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.
 

Jonathan Edwards

"Gibberish"
Messages
5,256
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).
 

SilverbladeTE

Senior Member
Messages
3,043
Location
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!
 

Jonathan Edwards

"Gibberish"
Messages
5,256
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!
 

A.B.

Senior Member
Messages
3,780
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.
 

Scarecrow

Revolting Peasant
Messages
1,904
Location
Scotland
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.
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.

2.1. Participants and Procedures
Participants in the current study were derived from a US and a UK sample. The US sample, also referred to as the DePaul sample, was derived from a convenience sample of international adults who self-identified as having ME and/or CFS. International participants within the US sample were removed for the purposes of investigating a strictly US sample. The UK sample, also referred to as the Newcastle sample, was comprised of participants who were referred by primary care physicians to the Newcastle-upon-Tyne Royal Victoria Infirmary clinic in England.
2.1.1. DePaul Sample
The US sample included adults between the ages of 18 and 65 recruited through various means, such as internet forums, and who had previously participated in studies at DePaul University. Those who were recruited self-identified as having CFS or ME and were required to provide informed consent before participation in the study. For the purpose of this study, participants were selected using the Fukuda et al. [5] criteria, removing those with exclusionary conditions (e.g. BMI > 45, lifelong fatigue, medically or psychiatrically explained fatigue), and international participants, removed for the purposes of investigating a strictly US sample.
2.1.2. Newcastle Sample
Participants from the UK sample included adults between the ages of 18 and 75 who were identified by primary care physicians as possibly having CFS and who were referred to the Newcastle-upon-Tyne Royal Virginia Infirmary clinic for a full medical assessment. All participants were assessed by a consultant physician. The individuals, who were fully assessed and found eligible, were required to provide informed consent prior to participation in the study. For the purpose of this study, individuals were selected using the Fukuda et al. [5] criteria, removing those with exclusionary conditions (e.g. BMI > 45, lifelong fatigue, medically or psychiatrically explained fatigue).
 

Jonathan Edwards

"Gibberish"
Messages
5,256
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.
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
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.

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.
 

Jonathan Edwards

"Gibberish"
Messages
5,256
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.

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?
 

Sasha

Fine, thank you
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Location
UK
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?

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. :(
 

SOC

Senior Member
Messages
7,849
America has lot of mental health problems due to the stress of a greedy dog eat dog system.
Your broad generalization without any evidence seems to be in conflict with the results of this paper.
Results revealed that the UK sample was significantly more impaired in terms of mental health and role emotional functioning,...
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.
 

SilverbladeTE

Senior Member
Messages
3,043
Location
Somewhere near Glasgow, Scotland
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
 
Messages
15,786
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.
 

jimells

Senior Member
Messages
2,009
Location
northern Maine
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.