Socioeconomic determinants of ME/CFS in Norway: a registry study, Hilland and Anthun, 2023

Social economic status can change from having ME/CFS, much more often going lower than higher due to decreased economic productivity from the patient working less or not at all and other household members often having to do unpaid labour. This effect could be larger than other conditions on average.

So measuring it at illness onset and many years into the illness could give different results.
 
There's quite a lot to this study, a lot of adjustments and assumptions that need to be understood when interpreting the findings. I mean, I think it's been done well, but it's surprisingly complicated.

Re the hospitalised controls:
The chronically ill patient population was created by drawing individuals registered in NPR with the following ICD-10 diagnoses: C50 "Malignant neoplasm of breast", M79.7 "Fibromyalgia", G35 "Multiple sclerosis", and A962 "Lyme disease". These diagnoses were chosen because they include other chronically diseases with increased disease burden for a long but limited time frame. In addition, they either share clinical characteristics with ME/CFS and/or disproportionately affect women, which previous research has shown is the case also for ME/CFS
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Re the type of ME/CFS patients:
The first factor is related to how we operationalize ME/CFS in this study. We only include ME/CFS patients that are diagnosed in the specialized healthcare services in Norway with the ICD code G93.3 which excludes all individuals that are either diagnosed in primary care or that suffer from undiagnosed ME/CFS.
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They use a washout period - so education and income are estimated 5 to 7 years before the period where new hospital records coded with ME/CFS are included. This is done to reduce the chance that the illness in the period before diagnosis influences educational attainment and income. Education is taken as the highest attainment of either the person or either of their parents.



They conclude that the family educational attainment of people affects the risk of an ME/CFS diagnosis, even when compared to a population that controls for the impact of socioeconomic status on the likelihood of receiving a chronic disease diagnosis. They think the mechanism is likely to be that people with ME/CFS with high education attainment are better able to engage with the health system to get a diagnosis.
Taken at face value, there seems to be a reverse effect of education for ME/CFS as we find that low educational attainment strongly reduces the risk of ME/CFS diagnosis, relative to medium educational attainment, when comparing with the healthy population sample controls. However, our analyses do not indicate that this is an epidemiological effect of low educational attainment that is unique for the risk of ME/CFS, rather it seems to reect the relationship between educational attainment and the risk of chronic disease in general. When comparing with a population consisting of hospitalized controls this effect is already accounted for in the model, and we see that the effect of low education is reduced to 11% and just becomes statistically insignicant (p=0.055). However, this is very close to being statistically signicant and we argue that this suggests that there are effects of educational attainment and the risk of ME/CFS even when comparing with a population that innately controls for the effect of educational attainment on the likelihood of hospital diagnosis. This nding should be taken together with the fact that we do nd a statistically signicant increase in risk of ME/CFS diagnosis for people with high educational attainment when comparing with hospital diagnosed controls.

This suggests that there is an effect of educational attainment on the risk of ME/CFS diagnosis, even when comparing with a population that innately controls for the existing relationship between SES and chronic disease in general. It is, however, unlikely that this is an epidemiological effect of educational attainment on the risk of ME/CFS, though it is theoretically possible given how poorly the disease is understood. What is more likely, is that given the unique characteristics of ME/CFS, specically the lack of medical tests and the need for clinical diagnosis that naturally follows from the lack of objective tests and biomarkers, the cohort consisting of people with low educational attainment is probably less likely to receive an ME/CFS diagnosis, compared to people with medium educational attainment. Individuals from families in the low educational attainment group or individuals with low educational attainment does not necessarily have a reduced risk of the disease as a function of their education level. Our findings could rather be interpreted as that they are less able to ask for, or less likely to receive a G93.3 diagnosis in meeting with the specialized healthcare system.
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If it is the case that individuals with low educational attainment are less likely to receive due to factors related to health literacy, clinical perceptions of low SES patients or healthcare access, then this needs to be addressed in order to avoid underdiagnosing individuals with ME/CFS.
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Hutan said:
Re the type of ME/CFS patients:
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Primary care in Norway doesn't use G93.3, but A04, which is not ME-specific but rather "fatiguing illness" or similar. This is a bit problematic since after 2014 (or thereabout) the new guidelines for ME/CFS says that patients should be diagnosed by their primary doctor not a specialist.

Hutan said:
They use a washout period - so education and income are estimated 5 to 7 years before the period where new hospital records coded with ME/CFS are included. This is done to reduce the chance that the illness in the period before diagnosis influences educational attainment and income. Education is taken as the highest attainment of either the person or either of their parents.
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So I would have been coded as a teen dropout, but with higher attainment from my parents. Huh.

Hutan said:
They conclude that the family educational attainment of people affects the risk of an ME/CFS diagnosis, even when compared to a population that controls for the impact of socioeconomic status on the likelihood of receiving a chronic disease diagnosis. They think the mechanism is likely to be that people with ME/CFS with high education attainment are better able to engage with the health system to get a diagnosis.
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There was a study on nutrition literacy not so long ago with samples from a health campus in Norway, health literacy is not necessarily high even in those of us with higher education in health care :confused:
 
Andy said:
And G93.3 is "Postviral and related fatigue syndromes", so no guarantee of PEM.
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Right. With the new guidelines in Norway Canada criteria is supposed to be used, which doesn't mean PEM is necessarily considered but if data is older this problem would likely be larger? I think the study that showed 80% of those that were sent on to specialists didn't have ME came from before the guideline change (note: 80% of those where the cases were unclear for their doctors and thus they were referenced to a specialist, not 80% of all ME patients).
 
Now published:

Free full text:
https://bmcpublichealth.biomedcentral.com/articles/10.1186/s12889-024-18757-7
Socioeconomic determinants of myalgic encephalomyelitis/chronic fatigue syndrome in Norway: a registry study
BMC Public Health volume 24, Article number: 1296 (2024)

Abstract
Background
Previous research has shown that socioeconomic status (SES) is a strong predictor of chronic disease. However, to the best of our knowledge, there has been no studies of how SES affects the risk of Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) that has not been based upon self-reporting or retrospectively screening of symptoms. As far as we know, this is therefore the first study that isolate and describe socioeconomic determinants of ME/CFS and calculate how these factors relate to the risk of ME/CFS diagnosis by utilizing individual level registry data. This allows for objective operationalization of the ME/CFS population, and makes it possible to model SES affect the risk of ME/CFS diagnosis, relative to control groups.

Data and methods
We conduct a pooled cross-sectional analysis of registry data from all adult patients diagnosed with ME/CFS from 2016 to 2018 in Norway, coupled with socioeconomic data from statistics Norway from 2011 to 2018. We operationalize SES as household income and educational attainment fixed at the beginning of the study period. We compare the effects of SES on the risk of ME/CFS diagnosis to a population of chronically ill patients with hospital diagnoses that share clinical characteristics of ME/CFS and a healthy random sample of the Norwegian population. Our models are estimated by logistic regression analyses.

Results
When comparing the risk of ME/CFS diagnosis with a population consisting of people with four specific chronic diseases, we find that high educational attainment is associated with a 19% increase (OR: 1.19) in the risk of ME/CFS and that high household income is associated with a 17% decrease (OR:0.83) in risk of ME/CFS. In our second model we compare with a healthy population sample, and found that low educational attainment is associated with 69% decrease (OR:0.31) in the risk of ME/CFS and that low household income is associated with a 53% increase (OR: 1.53).

Conclusion
We find statistically significant associations between SES and the risk of ME/CFS. However, our more detailed analyses shows that our findings vary according to which population we compare the ME/CFS patients with, and that the effect of SES is larger when comparing with a healthy population sample, as opposed to controls with selected hospital diagnoses.

https://twitter.com/user/status/1790003772137083179
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The paper said:
When comparing the risk of ME/CFS diagnosis with a population consisting of people with four specific chronic diseases, we find that high educational attainment is associated with a 19% increase (OR: 1.19) in the risk of ME/CFS and that high household income is associated with a 17% decrease (OR:0.83) in risk of ME/CFS. In our second model we compare with a healthy population sample, and found that low educational attainment is associated with 69% decrease (OR:0.31) in the risk of ME/CFS and that low household income is associated with a 53% increase (OR: 1.53).
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This seems expected given the difficulties in getting a diagnosis, which is more likely for people who can fight the system and confront GPs who want to run the usual abandonment script. It takes a certain level of privilege to be able to do this, let alone succeed at it.

But it tells us nothing about the socioeconomic determinants of ME/CFS, even less as predictors. This is more a study in the biases inherent in the health care systems than anything having to do with the patients or what is happening to them.

Just like the terrible so-called evidence-based medicine used to justify this disaster, consisting of nothing but highly biased pragmatic trials, is a garbage in garbage out process, so is this. Health care systems refuse to accurately record the data, therefore the data are not reliable. This is all by choice. We can't know anything for sure as long as there is this stubborn refusal to do it right.
 
They've written a summary on Facebook:

Autotranslated:

Today, Geir and Kjartan from Sintef have published the first register data analysis from Tjenestenog MEg.
In the article, they find a strong statistical association between higher education and being given a G93.3 diagnosis by the specialist health service.
They write that it is unlikely that this is an epidemiological effect of high education on ME risk, although there is still much we do not know about this disease.
The findings can at present be interpreted as those with lower education being less able to ask for, or less likely to receive, a G93.3 diagnosis in an encounter with the specialist health service.
They write that if it should be the case that people with low education have a lower chance of getting an ME diagnosis due to factors associated with poorer "health literacy" and clinical perceptions of patients with low socioeconomic status, then this should be addressed.
More research is needed in this area.
 
Kalliope said:
They've written a summary on Facebook:

Autotranslated:

Today, Geir and Kjartan from Sintef have published the first register data analysis from Tjenestenog MEg.
In the article, they find a strong statistical association between higher education and being given a G93.3 diagnosis by the specialist health service.
They write that it is unlikely that this is an epidemiological effect of high education on ME risk, although there is still much we do not know about this disease.
The findings can at present be interpreted as those with lower education being less able to ask for, or less likely to receive, a G93.3 diagnosis in an encounter with the specialist health service.
They write that if it should be the case that people with low education have a lower chance of getting an ME diagnosis due to factors associated with poorer "health literacy" and clinical perceptions of patients with low socioeconomic status, then this should be addressed.
More research is needed in this area.
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The health literacy in the Norwegian population is not exactly thought to be good. One in three is believed to at or below the "lowest level of health competence". In this case there are three levels of competence, and being at level 2 or 3 is considered sufficient. This is what is said about the requirement for being at level 2 (and above):
Health Literacy in the Norwegian Population survey said:
For example, respondents at level 2 typically find it easy to "understand information on food packaging" (able to make healthy choices), and respondents who score in the upper range of level 2 also find it "easy" to "assess the advantages and disadvantages of different treatments" (choose between different treatment options).
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Not sure I'd use similar concepts to describe the necessary knowledge to advocate for oneself to get a correct diagnosis.

Note, I have no idea how valid the "47 question International Health Literacy Population Survey Questionnaire" used to asses health literacy over here is ;)
 
Hubris said:
I will add that there is no value proposition to getting a diagnosis, because ME has no treatment, other doctors won't take the diagnosis seriously and pwME are usually denied disability in most parts of the world.
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The treatment is consideration to prevent deterioration.
Andy said:
And G93.3 is "Postviral and related fatigue syndromes", so no guarantee of PEM.
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What code is there for PEM-ME, or ICC-ME?
 
ME Research UK:

Although research has linked low socioeconomic status (SES) – a measure of economic and social status, with an increased risk of chronic disease(s), such as cardiovascular disease, and type 2 diabetes, less is known about how SES impacts the risk of ME/CFS – also a chronic disease.

Therefore, the authors of a paper – published in BMC Public Health, decided to explore the relationship between ME/CFS and SES further, specifically looking at household income and educational attainment.

Read more here: https://bit.ly/SESandMECFS
Read the full paper here: https://bit.ly/3ApL8Wr


https://twitter.com/user/status/1822920963706523781
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