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
 
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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.
 
This is interesting.
It would be nice if there were a way to take into account the change in wages of those who care for PwME....

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.
 
I've only just started reading this, but what an astonishing study. On the surface it is great methodology, covers the real world beyond clinical trials and focuses on objective outcomes. If it does what it says on the tin, it should prove very important in understanding the impact of the illness, provide powerful evidence for advocacy, and perhaps give us the best estimate yet for recovery/improvement rates.

I need to lie down, but here are a couple of snippets

Looks like a decent sample size (6-8.5k):



Fig. 2. Comparing wage development for working age (18–67 years) men and women with a G93.3 diagnosis between the full sample (N = 6249) and the cohort diagnosed in 2016 (N = 1244).

View attachment 24121

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!
 
It all depends however on how reliable those databases are.

- First there is the question of whether the diagnostic code G93.3 really reflects ME/CFS. In past database-studies of this kind we have seen abnormally high prevalence rates that increase in older age groups. Table 4 suggests that this cohort was younger with a mean age of 37 and 68% female predominance. Not sure what N= 42,889 and N= 30,468 refers to, probably the number of observations?

The authors do not report data of the entire cohort from which these ME/CFS were taken, so it's hard to estimate the prevalence rate. They note that Bakken et al. found 1162 cases per year in the same registries which corresponded to a incidence rate of 0.026%. In their less complete 2009- to-2015 sample, Kielland et al. found only 40% of the cases that Bakken found, so incidence was quite low. In short, it seems that the G93.3 diagnoses in Norwegian databases seem different that other registries. Perhaps Norwegian patients can comment on how reliable these registries are?

- Another problem is that there are a lot of incomplete cases, especially if you move further away from the diagnosis year. The trend for the 2016-2018 sample for which they had full data, however, looks the same as for the entire G93.3 sample. The authors also note that patients who fully recovered to no longer need medical care or had enough money to got to private clinics might not be recorded in NPR registries.

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?
 
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?

Quoting my post from earlier in the thread:
I've been waiting on this study since I first heard Kielland mention it. Great that it is finally out!

Before the current guidelines for diagnosis in Norway that I think came in 2014, diagnosis could not be done by the patients GP in primary services. After the new guidelines it could, and primary services uses the diagnosis code A04 not G93.3 that is used in specialist health care.

I was diagnosed by my GP in 2016-2017, I have no idea if I am in this dataset.
 
I've been waiting on this study since I first heard Kielland mention it. Great that it is finally out!

Before the current guidelines for diagnosis in Norway that I think came in 2014, diagnosis could not be done by the patients GP in primary services. After the new guidelines it could, and primary services uses the diagnosis code A04 not G93.3 that is used in specialist health care.

I was diagnosed by my GP in 2016-2017, I have no idea if I am in this dataset.

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.
 
Quoting my post from earlier in the thread:

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!
 
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?

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.
 
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!

Good question. We have not looked at that.
 
Few of those making no or very low income around the time of the diagnosis resumed earning moderate wages, and only exceptional cases returned to wages corresponding to median wages.

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.
 
@chillier I don't think someone with G93.3 necessarily is more severe. If you need contact with the specialist service or not during the process of getting an ME diagnosis would depend on many factors.

For me, I had been ill for years at various levels of functioning, with different referrals to specialist health care made by different GPs (I was young and moved around due to education, and there is a GP shortage in Norway so there was turnover). When the ME diagnosis was on the table no further tests were done in specialist care since all other likely diagnoses (based on my symptoms) had been looked at previously, some multiple times. After diagnosis I haven't had much contact with specialist care either, I can't remember if I have been at all due to the ME, so I might not be registered with G93.3 anywhere.
 
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.

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:
  • Narrator: A new car built by my company leaves somewhere traveling at 60 mph. The rear differential locks up. The car crashes and burns with everyone trapped inside. Now, should we initiate a recall? Take the number of vehicles in the field, A, multiply by the probable rate of failure, B, multiply by the average out-of-court settlement, C. A times B times C equals X. If X is less than the cost of a recall, we don't do one.
  • Woman on Plane: Are there a lot of these kinds of accidents?
  • Narrator: You wouldn't believe.
  • Woman on Plane: Which car company do you work for?
  • Narrator: A major one.
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.
 
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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.
 
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