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

Research Square
Socioeconomic determinants of myalgic encephalomyelitis/chronic fatigue syndrome in Norway: a registry study

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 rst 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, which allows for objective operationalization of the ME/CFS population, and the utilization of different control groups.

Data and methods: We utilize health registry data from all adult patients diagnosed with ME/CFS from 2016-2018 in Norway, coupled with socioeconomic data from statistics Norway from 2009-2018. We operationalize SES as household income and educational attainment xed at the beginning of the study period. We compare the effects of SES on the risk of ME/CFS diagnosis to a population of 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 specic chronic diseases, we nd 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 18% increase (OR:0.82) in risk of ME/CFS. In model 2, when comparing with a healthy population sample, we nd 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 nd statistically signicant associations between SES and the risk of ME/CFS. However, our more detailed analyses shows that our ndings 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.

 

This is a publication from the research project Tjenesten og MEg, a cooperation between the two research institutions Sintef and Fafo who are looking into ME patient's meeting with the public health care system. Thread about the research project here.

 

My impression from say dealing with enquiries is there could be underdiagnosis of ME/CFS in Ireland in lower socio-economic groups.

Possibly a higher percentage get diagnoses like fibromyalgia, functional neurological disorder, maybe migraine, anxiety and depression. From depending on the public health system and lower health literacy, probably a higher amount end up seeing psychiatrists and may be less aware of the diagnosis of ME/CFS.

 

Yes, that reminded me also of Professor Jason et al's study of undiagnosed youths with ME/CFS:

Most youth living with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) have not been diagnosed, according to a new prevalence study from researchers at DePaul University and Ann & Robert H. Lurie Children’s Hospital of Chicago, published by the journal Child & Youth Care Forum. Leonard A. Jason, a professor of psychology at DePaul University, led the seven-year study to screen more than 10,000 children and teenagers in the Chicago area.

The researchers found that less than 5% of youth in the study who tested positive for ME/CFS had been previously diagnosed with the illness. Of the children assessed, African American and Latinx youth were twice as likely to be living with undiagnosed ME/CFS.

https://www.luriechildrens.org/en/n...ng-with-undiagnosed-chronic-fatigue-syndrome/

 

Thread on study here, The Prevalence of Pediatric Myalgic Encephalomyelitis/Chronic Fatigue Syndrome in a Community-Based Sample (2020) Jason et al.

 

My guess is that higher socioeconomic status affects the ability to obtain a diagnosis, in particular when the problem is not easily diagnosable.

 

Agree. And this paper seems to suggest that higher education counts more than higher income.

 

Yup. And when you add the importance of appearance, how low economic status is perceived as low worth and achievement, where ME is more or less defined as a failure of achievement, or whatever, this basically tells us nothing useful at all, since everything is dependent on a distorted system of identifying and recording diagnoses.

The BPS model is essentially based on judgment, and it's not some big secret that physicians being near the top of the economic ladder are usually very detached from the lived reality of poor people, including people who are poor because of poor health. And anything relying on such judgment will bring politics and bigotries into the mix, and looking down on the poor is basically a fundamental aspect of human societies.

When you are faced with issues like this, you can't fail to notice that when a case isn't being actively managed, the patient has to do all the work, and that means that people who are more literate and better able to work with the bureaucratic systems of chutes and longer chutes have better chances of getting through a process that relies heavily on exhausting and demoralizing the patients, content that not recording reality is the same as actual reality.

Frankly so much research on ME is actually a mirror on the medical profession, but they never notice it, project and wrongly attribute all the things they fail at onto us, being unable to imagine they can't be wrong despite having zero evidence for any of this, and most of their chosen "facts" being debunked a long time ago.

 

At least in Norway. Other countries might value high income over higher education.

And, yup. I’m experiencing this live at the moment.

Been in need for urgent hospital care for maybe ME complications, maybe new issue - not important really.

But the instant shift in attitude and how I’m approched when they just see a middle aged worn down woman, versus when they realize I’ve got higher education and used to work in advanced technical field is rather stunning.

I’m pretty sure I got a few extra tests and to try out a better medication based only on how the perception of me changed. It felt like ‘oh, so your issues might actually be real’ moment.

 

Sorry, I didn't express myself clear. What I meant was that the study seems to suggest higher education counted more in regards of ME prevalence than income. I interpreted it as those people might be better equipped in seeking information themselves, and navigate. But yes, I guess it could also mean that one is taken more serious in the health care system, but that wouldn't quite add up with how ME patients are treated?

 

ME/CFS diagnosis is something you generally stumble upon yourself when you are searching for answers online. It’s not something that’s easily doled out by doctors. I think lower SES/lower educated people get sent to a psychiatrist.

 

Ultimately, being taken seriously at some point or another doesn't really change the outcome. Maybe the only significant change is over getting disability, I'm sure it plays into that a lot (that person deserves it, clearly not a scrounger, while this other person just looks like they're the lazy type, all judgment, mostly bigotry).

But for getting diagnosed and competent medical treatment? Makes zero difference, there's nothing anyway. Only the very rich who can pay for it themselves may end up better, but even at that, being able to pay for help in daily living probably has a far greater influence.

Appearances and perception play a huge role in the behavior of those who fail us, but we're all equally failed regardless. There are some factors like being tall and thin that will keep some of the nastier stuff away, but the outcome is still the exact same, it's just a matter of how much insult is added to injury.

 

As others have pointed out, in most cases getting an ME diagnosis involves going through a long medical gauntlet where everyone is against you and confidently asserting things that are completely wrong, but from a place of almost extreme scientific and moral authority. You are bombarded from all directions and doctors are trying to convince your caretakers that you are a crazy bastard and they should stop taking care of you. This often causes irreparable damage as you already had low credibility to begin with.

It is ironic that you are discriminated against for your lack of achievements, when that makes it more likely that you have a disabling chronic illness so if anything it would make more sense to dismiss high achieving people, if they were really itching to discriminate against someone. But apparently doctors are not smart enough to see how this is a paradox.

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. The diagnosis is extremely useless, so if you are a poor person it's a much better idea to self diagnose and use your remaining energy to make money and try to survive instead.

This makes me think, maybe someone should write a short story detailing all the gruesome details that patients go through during their medical gauntlet. Most of the time i see things described in vague terms like "doctors don't take you seriously" and i feel like that doesn't truly represent the situation. It might help with advocacy.

 

@Sean

Your comment reminds me of a story in
Maya Dusenbery's book, Doing Harm: The Truth About How Bad Medicine and Lazy Science Leave Women Dismissed, Misdiagnosed, and Sick.

Ms. Dusenbery writes about a woman who takes her son to her medical consults. Although he is youngish, if I recall correctly, about 19 or 20, he is quite tall, and this seems to garner respect, and help improve his mom's medical appointments.

As with the story above, I have noted that my medical appointments are more pleasant when my husband accompanies me.

 

Our regular GPs have always been male. As have most specialists.

Experience with female doctors where we both attend has been mminimal. Two instances where we both attended a consult with a female doctor were less than stellar. The first was just odd, but the other was unpleasant and I was misdiagnosed. Leading to of course more delay in getting the proper diagnosis and treatment.

So, not enough data to say whether or not being accompanied by my husband improves the appointments with female doctors.

I know women may prefer female doctors. It would be interesting to see if experiences are all over the map, or if being accompanied to a consult makes for a more positive outcome whether seeing a male or female doctor.

 

Yes the difference in income and education as risk factor are interesting. Compared to hospitalized patients, a higher income decreased the risk of ME/CFS while a higher educational attainment increased the risk.