A Cross-National Comparison of ME and CFS at Tertiary Care Settings from the US and Spain (2019) Castro-Marrero et al

Hoopoe

Hoopoe

Senior Member (Voting Rights)
Abstract said:
Cross-national comparative studies are useful for describing the unique characteristics of complex illnesses, and can reveal culture-specific traits of disease frequency/severity and healthcare. Though myalgic encephalomyelitis (ME) and chronic fatigue syndrome (CFS) are debilitating conditions found all over the world, few studies have examined their characteristics across different countries. The purpose of this study was to compare the levels of functional impairment and symptomatology in patients with ME and CFS at tertiary referral hospitals in the US and Spain. Four hundred twenty potentially eligible participants (N = 235 from the US and N = 185 from Spain) who met the 1994 Fukuda et al. definition for CFS were enrolled. Both samples completed the medical outcomes study 36-item short-form health survey (SF-36) as a proxy for impairment, and the DePaul Symptom Questionnaire (DSQ) for patient symptomatology. ANCOVA and, where appropriate, MANCOVA tests were used to compare the SF-36 and DSQ items for illness characteristics between the samples. The patients from Spain demonstrated significantly worse functioning than those from the US in the SF-36 domains of physical functioning, bodily pain, general health functioning, role emotional, and mental health functioning. The Spanish sample also was also more symptomatic across all the DSQitems, most significantly in the pain and neuroendocrine domains. These findings may be due to differences between the US and Spain regarding disability policy, perception of ME and CFS, and access to specialist care.
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http://onlinesciencepublishing.com/...T00450/1576732660_AJSSH-2020-5(1)-104-115.pdf
 
There is an enormous difference in the emotional functioning between the two cohorts: 70 for the US cohort, 20 for the Spain cohort.

Also some other major differences but this one really stands out.
 
How representative were the samples of each country's population?
How to compare such disparate groups, cultures?

The Spanish cohort were less educated, and more often married and working either part-time or full-time. No wonder they complained more.
 
strategist said:
There is an enormous difference in the emotional functioning between the two cohorts: 70 for the US cohort, 20 for the Spain cohort.

Also some other major differences but this one really stands out.
Click to expand...
For example the Spanish cohort was a much higher percentage of the population than the US cohort.

N = 235 from the US and N = 185 from Spain.
 
Wow there is a huge difference in % on disability: 68% US vs 40% Spain. Huge differences in education too. Doesn't appear to include illness duration or onset. Living status appears high, I doubt the number of pwME in a relationship is this high overall. There is a very high arbitrariness to the sample, of patients who make it to tertiary care through hospitals. This is exceptionally rare and unlikely to be representative of the patient population, most of whom don't even have basic medical care (beyond "it's all in your head, now go away" anyway) based on their initial contacts with health care or their GP, if they have one.

I'm not sure what this study tells us. Different systems create different circumstances, doesn't tell us much about the patients themselves, not much about the systems either. It generally confirms the picture that things are awful and inadequate for the patients, I guess. And that there are indeed a huge number of symptoms, making the obsession with "feeling of tiredness" at the exclusion of everything else unproductive and misleading, but we knew that already.

The list of symptoms appears similar to what Ramsey found and consistent in both countries, FWIW. This is definitely useful. The "fatigue FATIGUE FATIGUE" obsession basically leaves out the vast majority of the illness profile. That's certainly extremely bad.
 
For some reason this came up in my alerts for papers recently published.
Abstract is at different link to what is in the opening post of this thread, https://onlinesciencepublishing.com/abstract/22/450/

Denise said:
Fukuda?
In a publication dated 2020?
With L Jason as an author?
:banghead:

Wha?
Click to expand...
Yep, couldn't agree more.

Note also the continued language of separation, "Though myalgic encephalomyelitis (ME) and chronic fatigue syndrome (CFS) are debilitating conditions found all over the world", yet the abstract makes no distinction between ME and CFS when discussing results, which to me makes no sense - either they are investigating two things with differences between them, in which case they should report what they find for both things separately, or they are actually investigating one thing, in which case it seems reasonable to report the results as a whole.
 
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