What can wage development before and after a G93.3 diagnosis tell us about prognoses for myalgic encephalomyelitis?, 2024, Kielland et al

I wanted to understand what the wages mentioned in the paper equated to in other currencies. I used xe.com and I rounded to the nearest 500 to make things easier to follow. Clerical errors are possible - just let me know and I'll fix. Here you go:

500,000 Norwegian Kroner
=42,500 Euros
=35,500 British Pounds
=45,000 US Dollars

100,000 Norwegian Kroner
=8,500 Euros
=7,000 British Pounds
=9,000 US Dollars

50,000 Norwegian Kroner
=4,000 Euros
=3,500 British Pounds
=4,500 US Dollars

 

Clever and careful study. Can't wait to read this one properly on paper.

 

I hope media picks it up.

 

Good write up from Nina E. Steinkopf:

Vanvittig sløsing med offentlige ressurser

automatic translation:

Incredible waste of public resources

Quote:
For years, The Norwegian Labour and Welfare Administration (Nav) has demanded that ME sufferers who are under work clarification allowance (AAP) are treated with cognitive behavioral therapy and graded exercise therapy as a condition for applying for disability benefits. Many get their application rejected even if they have carried out such measures several times, and even if the measures have made them sicker. Some are not even offered such treatment.

This practice has been going on for years. The practice continues, even though it has been two years since the Parliament decided that it should cease.

 

Thank you! Jing and I have actually written and submitted that article (with Kjartan from Sintef), so we hope it will be published in not too long. We used the same type of data for mothers, fathers, male and female partners. For method we used matchnig techniques to be able to better compare the caregivers to similar controls from the general population.

 

Thank you! Figure 3 is actually better, this figure was mainly used as a robustness check, ensuring we could trust the 2009-2015 data as well, as it behaves very similarly as the complete 2016-2018 cohorts!

 

Reply:
1. You are absolutely right that there is a bias in the diagnosing og ME with G93.3, primarily affecting persons already socially deprived. Apart from that, the diagnostic process is quite thorough (see e.g. Owe et al 2016), although one must wonder whether some of the cases that maintained a good salary throughout the years before during and after the diagnosis might have been wrongly diagnosed. The project has addressed the socioeconomic bias in diagnosing ME patients in two other publications, one on our survey-data that is under peer-review, the other one by researchers at SINTEF, the discussion part there is the most relevant, suggesting health literacy, proxied by education level, matters to obtaining a diagnosis: doi.org/10.1186/s12889-024-18757-7

2. Those studied were of working age, 18-67, in the 10 years we had data for, as we studied wage income, and the transfers are converted to pensions at 67. This explains, the sample's low age average. More of our demographic data were unfortunately only published in Norwegian https://septentrio.uit.no/index.php/helseforsk/article/view/6535/6901

3. The large N’s are case*years, yes.

4. We do not have prevalences because we did not get access to deaths, migrations etc. But the estimated annual incidence based on the registers were in 2016-2018 of 36.1 / 100,000 person-yrs, women relative to men 3.7. https://septentrio.uit.no/index.php/helseforsk/article/view/6535/6901

5. As we only got data for 2009 – 2018, we could not estimate the longer trajectories for those diagnosed in the later years. We have now obtained ethical approval for adding 5 more years to the data, and just obtained funding for buying it from statistics Norway. Hopefully, there will be more publications in not too long.

 

I think wage is a very reasonable proxy for health, and it does seem like there is almost no one who has very low wages at diagnosis that go on to improve their income later on in their data.

Because diagnosis appears so delayed from the probable onset of symptoms, it doesn't preclude the possibility that if you've only had symptoms for 1 or even 2 years that your chance of recovery may be much better.

G93.3 I believe is the icd10 code for 'post viral fatigue syndromes' and in the UK I think think this is only registered in hospitals. I imagine for most people diagnosis is made first by a gp, which will instead be represented by a 'read code.' In that case the registration of g93.3 wouldn't correspond to date of diagnosis of ME/CFS. I'm guessing though they do things differently in Norway. I could be wrong. Does anybody know more about this?

 

If you were diagnosed by GP, you have an A04, and are not in the data set. The A04 category is very hetrogenous, and it would therefore be impossible to know who in that group would meet the Canada criteria, for eaxample. The G93.3 is a much more homogenous group, where most meet the Canada criteria, according to Owe et al 2016.

 

Ah thank you, I missed that! I wonder how that might affect the cohort. If you're missing diagnoses from primary care are you looking at people with a more severe phenotype at the time of registration of g93.3? EDIT: the author has already commented on this!

@Anne Kielland do you know whether there is a relationship between the length of time between wage drop to g93.3 diagnosis, and recovery of wages later on? In other words: if you're diagnosed more quickly do you have a better prognosis?

Thank you for this work!

 

In comparison here's a 2019 study that used G93.3 codes from the US Optum database which I think looks less reliable than the Norwegian data.
https://pubmed.ncbi.nlm.nih.gov/30671425/

Prevalence of ME (G93.3) was 120 (actual data) - 870 (extrapolated) per 100.000. Female predominance of 60%. Age distribution that looked like this:


https://www.s4me.info/threads/estim...rning-2018-valdez-proskauer-et-al.7279/page-2

 

Very good point that some may get well before obtaining the diagnosis, as it takes so long to get it.
In Norway the GP gives A04, which is a very hetrogenous group of patients, making research on trajectories blurry. Hospitals/specialist healt care services give G93.3, and a majority of the G93.3 meet the Canada criteria according to Owe at al 2016.

 

Good question. We have not looked at that.

 

This conclusion shows that ME/CFS is a huge burden for families and society, who become responsible for supporting the individual financially. This alone should make politicians understand how urgent it is to invest into research.

 

I am very glad to hear this and look forward to reading the article!

 

I don't think anyone here is surprised by this. The graph of diminishing income is quite similar to my own, with many years where it was zero. And many continuous months in the years before of on/off work.

I would confidently assert that everyone dealing with this, from our biopsychosocial overlords to government authorities and anyone working in psychosomatic ideology is well aware of this. The main, hell the only, purpose of those rehabilitation programs is to get us back to work. That they choose to focus on secondary analyses of various mental health labels changes nothing to the fact that the aim of those programs would frame it as a rousing success if most of us got back to work but our mental health deteriorated sharply as a result, however unlikely that may be.

And knowing of the failure of those programs, essentially spending money to lose more money, is precisely why there is so much hostility towards us. They are making the exact same calculation as the famous quote from Fight Club, a true devil's bargain:

Their rehabilitation programs are both a gross and a net loss. But they calculate that the cost to them is lower than the full cost of acknowledging the illness, paying full disability for everyone affected, and having to conduct research solving this intractable problem. IMO every country, health care system and health authority makes this calculation knowing that if they ever choose to end the policy of "I reject reality and substitute my own", they alone would bear the cost of doing so, because it's very unlikely that anyone would follow them at it. They know that efforts so far have come up bust and that it would take a major international research effort to solve it, and that those almost never happen in medical research. It's a complete scattershot effort with zero coordination or economies of scale.

So they don't do the recall. They let us burn and crash at enormous costs to everyone, mainly to us but also massively expensive to society, because they don't have confidence in the institutions of medicine and the tools of science to do what they do best: solve complex problems. This attitude is so common, the learned helplessness they have all accepted in full: what if we try and if it's for nothing because there's nothing and we look like fools for having tried, for being suckers who fell for a bunch of worried-whiners?

Of course there's a self-fulfilling prophecy part of this because of delayed diagnoses, which although on paper at 6 months, is actually closer to the 5-6 years mark, not accounting for those who never get diagnoses. This is largely why almost no one here recovers, because it's a process that no one knows how to affect, so when it happens it's a natural organic thing, but by delaying diagnoses they make sure that they mostly see patients past the point of no return. Even though a full count would still have to account for lots of people being out of work, likely labeled 'burnout' or mild depression or whatever, for months or years.

And of course LC is changing this by going the other way around and targeting those least disabled and within the main period of recovery, so that they can boast about recoveries they had nothing to do with. Which all distorts everything back, but of course making a true comparison between patients who go through rehabilitation and those who don't would show no difference between the group, with likely slightly worse odds in the active rehabilitation cohorts. As long as they don't actually count, they can maintain their denial of reality.

I just can't imagine, given how easy it is to get this information, that those involved in this are not aware of this. They are certainly the kinds of fools who fool themselves first, but the data don't lie. This is why almost none of the trials, and none of the clinics, despite existing solely for the purpose of getting people back to work, report this. Why PACE reported their null results in another paper published in a lesser journal.

More of this kind of research, please. This is what exposes the lies. The programs only exist to get us back to work. They don't do that. All the money spent on those are wasted twice over with us being unable to work anyway, and all of this in addition to base expenses that go into raising someone to a functioning adult: all the education, health care and various expenses that get repaid during a lifetime of paying taxes. It's the absolute worst lose-lose-lose-lose proposition and this is how their lies get exposed: with dollar/euro/currency signs.

 

It’s so obvious - blaming the patient for not being well and not wanting to get better fits nicely with capitalism. The only way to get attention is to show that money is being wasted and there is economic inactivity. The BPS “fix” of thinking yourself better is a waste of money. Nobody cares that it’s a waste of time, or doesn’t help but they will care if it’s a waste of money.