Journal of Preventive Medicine & Healthcare: A Comparison of Patients with CFS and ME from USA and Japan - 2021 - Jason et al

[Kalliope]

Full title: A Comparison of Patients with Chronic Fatigue Syndrome and Myalgic Encephalomyelitis from the United Stated and Japan
Elzbieta Wiedbusch, Joseph Cotler, Leonard A. Jason

Abstract:
Chronic fatigue syndrome (CFS) and Myalgic Encephalomyelitis (ME) are debilitating conditions found globally. Yet, most studies on these illnesses include patients from the United States (U.S) and the United Kingdom (U.K.). The current study compares impairment levels of 124 patients living in Japan with 210 patients from the U.S. All patients are from tertiary- care settings that specialize in ME/CFS. The DePaul Symptom Questionnaire and Medical Outcomes Short-Form 36 were completed and used to assess the participants’ symptoms and functional abilities. The U.S. sample showed more impairment in neurocognitive, gastrointestinal and post-exertional malaise symptoms when compared to the Japanese sample. Japanese women demonstrated significantly worse impairment in physical, role-physical, and mental health functioning than Japanese men. Interestingly, Japanese women reported similar functional impairment levels to both men and women in the U.S., despite being less likely to receive disability benefits. These findings may be due to national differences in disability status and gender parity.

 

[Andy]

Again with the confusing separating of Chronic fatigue syndrome (CFS) and Myalgic Encephalomyelitis (ME), and while also using ME/CFS elsewhere in the text, e.g.

"DISCUSSION
The present study compared a U.S. patient sample diagnosed with ME/CFS using the Fukuda et al. [16] criteria with a Japanese patient sample with chronic fatigue (of which most patients were presumed to have ME/CFS)."

 

[Hutan]

Checking the authors, none are Japanese. It seems a bit odd in 2021 for researchers to be drawing conclusions about the impact of cultural and socioeconomic factors such as disability benefit access without the benefit of a person from that culture on the team. The acknowledgements section just refers to NIH funding but surely there must have been some assistance in Japan to have 124 Japanese patients fill out a survey, or to check that translated versions of the surveys work well?

I think inter-cultural comparisons could be interesting, but there's quite a lot of scope for wrong conclusions to be drawn, especially when the samples are quite different (e.g. particularly clinician diagnosed versus self-identified ME/CFS).

Japanese participants were recruited from the ME Japan association [14], and associated physician clinics specializing in ME/CFS. A total of 136 participants were recruited. Diagnostic criteria were not applied due to previously mentioned issues with obtaining a diagnosis for these conditions in Japan. Thus, the sample is based on self-report measures and could be classified as patients with profound fatigue.

 

[alktipping]

although it is a poor quality paper the fact that many sick people in japan and elsewhere cannot get benefits also calls out the secondary gains lie that has been promoted for centuries .

 

[Peter T]

although it is a poor quality paper the fact that many sick people in japan and elsewhere cannot get benefits also calls out the secondary gains lie that has been promoted for centuries .

An aside, but we desperately need data to call out the secondary gains nonsense. Certainly in financial terms it is highly unlikely that anyone is better off after getting ME than before.

One of the extremes we hear of is people in the US living in their cars because they spent all their savings/incurred debt paying for health care and even to get a diagnosis and then received nothing because their insurers deny the existence of ME/CFS as a biomedical condition.

The nightmare of living in a car with noise and light sensitivities and problems with temperature control is unimaginable. Hardly a secondary gain.

 

[alktipping]

as peter trewitt says there is need of proper data regarding so called secondary gains . but there are no financial gains to be made by researchers in gathering such data just like the lack of any real research into the numbers of people sick with m e /csf who do not recover . the main financial support for the psycho social industry does not want to find contradictory evidence against their infantile assumptions .

 

[Trish]

I'm sorry, but it seems completely daft to me to do a study like this on samples selected in such different ways in the 2 locations, and to use them as a basis of comparison. I suspect if a study were done on 2 samples, both from the USA, selected in the same 2 ways, similar probably meaningless differences would be found by chance.