Two age peaks in the incidence of chronic fatigue syndrome/myalgic encephalomyelitis: a population-based registry study from Norway…, 2014, Bakken+

Seven said:
I have heard they can go into remissions to be worst after giving birth. Do not remember a percentage or how often.
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Yes, a friend' s sister was much improved during pregnancy and worse afterward. Immune system switch may make sense and would seem to be worth studying.

It would be interesting to see metabolomics and immune expression before during and after pregnancy ...
 
Russell Fleming said:
I found the graphs that showed people had been steadily/dramatically increasing the number of GP consultations, tests, prescriptions and referrals in the up to 10 years prior to a diagnosis also very interesting in this context.
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Couldn't this simply reflect the long time taken to get a diagnosis, especially in gradual onset cases? I suspect that, if sudden and gradual onset were separated, the marked increase in consultations in years preceding diagnosis would be much reduced or nonexistent in the sudden onset group.
 
In regards to GP visits leading up to diagnosis of ME for gradual ME patients I wonder how many patients had severe cognitive symptoms as the most obvious symptom in the early mild years.

I had significant change cognitively at my mild onset and in the background I was noticing something wrong physically PEM wise but not understanding the PEM. My doctor visits were about the cognitive side not the physical side because I was still trying to understand what was happening totally. So in this circumstance early ME can look like stress/mental problems to GP? So it wasn't until severe that I finally got a diagnosis of ME.
 
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There was a paper published about GP usage in the year before diagnosis. They found that there were more visits and concluded that this showed we were hypochondriacs (though they put it differently!) An equally valid conclusion would have been that more infections challenged the immune system.

As is typical with BPS research the methodology was dreadful and uninterpretable. It turns out the commonest reason for seeing a GP was "illegible" :)
 
Regarding apparent lower incidence during 20's:

I was sick at that time, and no doctor wanted to believe I was ill. It was too early for diseases like Lupus and MS, and too late for child onset diseases. Some of them didn't even write symptom notes in my charts, so it would have been difficult for a chart review to pick up that I was actually ill. Certainly the first couple of doctors didn't refer me anywhere.

Trish said:
It seems possible to me that anyone getting ME over 65 will simply quietly retire from work and put it down to age and adjust their lifestyle to cope with it, rather than seeking specialist referral.
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Or it's another age bias from the doctors.

You can be ill only at certain ages. Otherwise it's being a silly young thing, or aging. Or whatever excuse the doctor can think of, if they can't figure it out in 7 minutes.
 
Merged thread
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Two age peaks in the incidence of chronic fatigue syndrome/myalgic encephalomyelitis: a population-based registry study from Norway 2008-2012
Bakken, Inger Johanne; Tveito, Kari; Gunnes, Nina; Ghaderi, Sara; Stoltenberg, Camilla; Trogstad, Lill; Håberg, Siri Eldevik; Magnus, Per

BACKGROUND
The aim of the current study was to estimate sex-and age-specific incidence rates of chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) using population-based registry data. CFS/ME is a debilitating condition with large impact on patients and their families. The etiology is unknown, and the distribution of the disease in the general population has not been well described.

METHODS
Cases of CFS/ME were identified in the Norwegian Patient Register (NPR) for the years 2008 to 2012. The NPR is nationwide and contains diagnoses assigned by specialist health care services (hospitals and outpatient clinics). We estimated sex-and age-specific incidence rates by dividing the number of new cases of CFS/ME in each category by the number of person years at risk. Incidence rate ratios were estimated by Poisson regression with sex, age categories, and year of diagnosis as covariates.

RESULTS
A total of 5,809 patients were registered with CFS/ME during 2008 to 2012. The overall incidence rate was 25.8 per 100,000 person years (95% confidence interval (CI): 25.2 to 26.5). The female to male incidence rate ratio of CFS/ME was 3.2 (95% CI: 3.0 to 3.4). The incidence rate varied strongly with age for both sexes, with a first peak in the age group 10 to 19 years and a second peak in the age group 30 to 39 years.

CONCLUSIONS
Early etiological clues can sometimes be gained from examination of disease patterns. The strong female preponderance and the two age peaks suggest that sex-and age-specific factors may modulate the risk of CFS/ME.

Web | PDF | BMC Medicine | Open Access
 
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Older paper (2014) predating S4ME, but relevant for review due to —

Jonathan Edwards said:
Audrey Ryback talked about her work on electronic health care records in Lothian. This is impressive. They appear to have a genuinely population based cohort. The prevalence was up at 0.8% - 7,000 cases out of 900,000 people. In other words everyone with ME/CFS in a defined area. This begins to look like solid population data. (And I suspect GPs in Lothian are relatively good about coding ME/CFS compared to some places.)

The data provide a variety of measures of disease dynamics. Audrey stayed with us Wednesday night and also showed me work she has been doing with Simon on age of incidence profile which are to me pretty mind-blowing. Clues from the old Norwegian study look as if they are replicable. […] To me it looks as if there is a totally novel aspect to ME/CFS disease dynamics worth a very deep look at.
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Simon M said:
I'm glad you think that. I am biased, but I've been stunned by the findings.
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See general discussion thread The two age peaks in onset of ME/CFS.
 
What is Ryback's work showing? The same two age peaks or something more?

What do these two age peaks suggest?

What are the hypotheses on the reason for the peak in adolescence? Brain maturation associated with becoming an adult? Sex hormones?

What other illnesses show two age peaks?
 
Good to have a thread for this paper. I wonder should the two age peak thread @SNT Gatchaman helpfully linked to above be merged with this one?

Bakken et al.'s main finding was:
We observed a distinct age pattern in the incidence rate of CFS/ME, with the number of cases peaking in the age groups 10 to 19 years and 30 to 39 years.
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Thought it would be useful to have Bakken et al.'s figures here, for people who cannot look at the paper. I've prefaced each figure by what Bakken et al. write about each figure in the results section:

Figure 1 shows the number of cases in one-year age intervals for women and men separately. For both sexes, two distinct peaks in the number of cases were observed, the first in the age group 10 to 19 years and the second in the age group 30 to 39 years.
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Figure 2 shows the number of cases per year by age category for men and women separately, estimated from the Poisson regression model. The non-overlapping CIs support the existence of two age peaks in the distribution indicated by the raw data (Figure 1).
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Figure 3 shows the estimated incidence rate per 100,000 person years for men and women separately. After adjustment for population figures, the pattern with two age peaks is clear for women, whereas a second peak is not evident for men.
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On the general thread, @Russell Fleming highlighted a study Bakken co-authored - Collin et al. 2017 - which found increased healthcare use long before diagnosis. While there are a number of possible reasons for that, I think this gets more interesting with increased awareness of a potentially similar pattern in MS.

This is from Collin et al. 2017. Females are green, males are orange. Solid lines are pwME/CFS. Dotted lines are controls:

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I remember a turning point where I began experiencing episodes of exhaustion, malaise, poor sleep. I consider that the onset of clinically significant illness, but I believe that 1-2 years before that, I was already showing subtle symptoms. The most important symptom was, occasionally and without any reason, waking up with malaise and as if I had barely slept. Since my onset was at the age of 15 this would fit with the Norwegian data showing a sudden increase in incidence in the age 10-14 group.

Thinking about it my onset was probably actually at the age of 14, one month and a week before my 15th birthday.
 
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Evergreen said:
Thought it would be useful to have Bakken et al.'s figures here, for people who cannot look at the paper. I've prefaced each figure by what Bakken et al. write about each figure in the results section:
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One thing I think can be said at this point is that although it looks as if the second peak for men was partly an artefact there are also good reasons to think it is still there. It would be easy enough to link two peaks to changes in female hormone levels but if the male peak is real that doesn't work.
 
Jonathan Edwards said:
One thing I think can be said at this point is that although it looks as if the second peak for men was partly an artefact there are also good reasons to think it is still there. It would be easy enough to link two peaks to changes in female hormone levels but if the male peak is real that doesn't work.
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So if the second male peak is real, would we have to argue that the second peak being stronger for females is because of differences between the sexes' immune systems as they encounter infections, perhaps from children?

Or are there other explanations?
 
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Evergreen said:
Or are there other explanations?
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We'd have to rule out sex hormones as a critical driver, wouldn't we, if it is real? Both female peaks align roughly with changes in hormone levels, but they don't in males. And the second female peak would be more persuasive if it occurred between 40 and 50 instead of 30 and 40.

Presumably it would be quite helpful to be able to rule that out, though I suppose it's difficult to do so entirely.
 
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