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CFS/ME starts most often age 10-19 & 30-39: Norwegian population study

lansbergen

Senior Member
Messages
2,512
I think the timing is wrong for pregnancy and kids and even if fathers undergo physiological changes during pregnancy I very much doubt they bear any relation to the ones mothers do. And anyway if all the peak was due to pregnancy somebody would have twigged to the association by now.

I wonder why people always want to blame pregancy and sexhormones. In my case pregency has nothing to do with it and I had smooth pregancies and births., Even the sleepless nights for feeding the babies had no big impact on me.
 

daisybell

Senior Member
Messages
1,613
Location
New Zealand
Perhaps the 2 peaks represent hormonal vulnerability.
I guess that in those two age bands, hormone levels are changing... Ramping up in the first and cooling down in the second....? I can't think what could account for the vulnerability, but it is fascinating that it's there... Surely it has to be important!
 
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3,263
I am a bit confused. Are people comparing the two graphs from the same paper or the incidence graphs from the two different studies. It was the difference in incidence at age 10-20 that seemed to me might need explaining more.
@Jonathan Edwards , @Bob, the comment applies to both MS studies actually. The Brazilian study uses the term "symptom onset" but a careful look at the text reveals they actually mean onset of MS, as defined by formal diagnosis.

I'm suspicious of the Brazilian study, because so few details were given about methodology, so I'd suggest preference be given to the UK study.

Jonathan may be able to tell us more about how formal MS diagnosis is made, and how this might vary from country to country. I seem to remember oligoclonal bands are important, but not sure of the details.
 
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Bob

Senior Member
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16,455
Location
England (south coast)
@Jonathan Edwards , @Bob, the comment applies to both MS studies actually. The Brazilian study uses the term "symptom onset" but a careful look at the text reveals they actually mean onset of MS, as defined by formal diagnosis.
I've read it three times and I can't see any mention of a formal diagnosis, except when it refers to criteria for including participants in the study. Elsewhere it only seems to discuss disease onset and symptom onset. But it's seems likely that they are using the terms interchangeably. I do agree that the study isn't useful.
 
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Sasha

Fine, thank you
Messages
17,863
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UK
Do we know the average time taken to get an ME diagnosis? If it's five years or something, that whole graph is going to be shunted five years sideways (especially for the adults, I suspect, who will perhaps be more likely to initially get written off as stress cases).

If social factors affect diagnosis of men and women differently and introduce more noise into the men's distribution, I wonder if that might account for the flatter peak.

Has anybody found a graph of hormone levels by age? I googled a bit but couldn't find one.
 

Sasha

Fine, thank you
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17,863
Location
UK
I was just googling to see if I could find an age distribution of stress (I couldn't) but stumbled across this PTSD graph (sorry I'm a bit rubbish using Paint). Interesting similarities in the distributions and male/female ratios although it's nothing like as spikey.

I'm not suggesting that ME is stress, of course, but if you add stress onto a viral trigger that everyone is getting then maybe it's relevant in setting up a disease process.

It's a pity there's not a big book of M/F age distributions of prevalence in all the different diseases that we could flick through!



PTSD chart.jpg
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
Do we know the average time taken to get an ME diagnosis? If it's five years or something, that whole graph is going to be shunted five years sideways (especially for the adults, I suspect, who will perhaps be more likely to initially get written off as stress cases).

If social factors affect diagnosis of men and women differently and introduce more noise into the men's distribution, I wonder if that might account for the flatter peak.

Has anybody found a graph of hormone levels by age? I googled a bit but couldn't find one.

I tried a PubMed search with 'endocrine' and 'age' in the title.

I got this:

http://www.ncbi.nlm.nih.gov/pubmed/25460292

which says "Aging increases the risk of developing obesity, sarcopenia, osteoporosis, and, also, cardiovascular diseases. A reduction of both bone and muscle mass with a corresponding increase of fat mass and inflammation and hormonal imbalance in the elderly lead to and may synergistically increase cardiovascular diseases. "

this:

http://informahealthcare.com/doi/abs/10.3109/09513590.2012.705372

which looks at the variation of a range of hormones in women with age, two of which decrease from about age 25, if I've understood the abstract from a quick look (full text needs log-in/payment).

this (full text):

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3368374/

which says "In males, levels of testosterone decrease by 1% per year, and those of bioavailable testosterone by 2% per year from age 30 [16, 58, 59]. In women, testosterone levels drop rapidly from 20 to 45 years of age [60]."
"circulating GH levels decline progressively after 30 years of age at a rate of ~1% per year [84]. In aged men, daily GH secretion is 5- to 20-fold lower than that in young adults [85]. The age-dependent decline in GH secretion is secondary to a decrease in GHRH and to an increase in somatostatin secretion [86]."

this:

http://www.ncbi.nlm.nih.gov/pubmed/19938780 which is called 'Endocrine changes with advancing age' and is in German - do we have a German reader who can access the paper?

this:

http://www.clinchem.org/content/45/8/1369.full which is called 'The Endocrinology of Aging' but I can't find much from a quick look - may need to look at the referenced papers.

There are many more but I'm tired now.
 

Scarecrow

Revolting Peasant
Messages
1,904
Location
Scotland
3. The relatively bigger 'young' male peak may be an artefact: the 3x factor seems to cut in at puberty (seen in this study as well as one by Esther Crawley) so some of the early male data has probably been scaled up inappropriately as I scaled all male data x3 (hey, even that was pushing my photoshop skills)
There seems to be something very different going on in the girls' and boys' graphs not seen in adults. For the first five years or so, there is nothing to choose between them. The boys then plateau all of a sudden while the incidence in girls continues to increase for three or four years.
 

Jonathan Edwards

"Gibberish"
Messages
5,256
There seems to be something very different going on in the girls' and boys' graphs not seen in adults. For the first five years or so, there is nothing to choose between them. The boys then plateau all of a sudden while the incidence in girls continues to increase for three or four years.

I think Simon may be right that the girl peak is inflated in later adolescence by the effects of a post-puberty female hormone environment. If this is so then there are three factors at work. One is some sort of trigger or risk factor for both sexes peaking around 12. Another is a factor for both sexes peaking around 35. The third is post-puberty female hormones which amplify the late peak and distort the early peak by amplifying increasingly after 12 to make it look as if it peaks later.

Something that comes up repeatedly with female hormones and confuses things is that risk associated with female hormones may be determined by the exposure of the system to hormones over a prolonged past period. Thus it is not the hormones at the time that matter but the fact that they have been there for ten years or more. In simple terms, having a wide carrying angle at the elbow, or the superior female sense of smell, has nothing to do with hormones today, and everything to do with hormones in the past. So once puberty has occurred I am not sure we should think further ups and downs will indicate hormone ups and downs. The female curve does not drop to the male curve at the menopause. Both probably start dropping earlier and just go smoothly down.
 

wastwater

Senior Member
Messages
1,271
Location
uk
Could the first peak be related to MMR and the second to Gardasil also explaining the female predominance
 

Jonathan Edwards

"Gibberish"
Messages
5,256
Could the first peak be related to MMR and the second to Gardasil also explaining the female predominance

MMR would seem to be long since over - and I am not sure why one should blame MMR rather than formula milk or riding in a baby buggy to be honest. Gardasil would similarly seem to be at the wrong time for the second peak and no more relevant than a thousand other things (and no good for the second male hump). The peaks look about as unrelated to vaccination as they could be, to be honest.
 

chipmunk1

Senior Member
Messages
765
does the graph show onset age or age when the diagnosis was made? how long does it take to get diagnosed on average? if it takes a while there could be a significant delay and then the peaks could occur many years earlier than the graph would indicate.
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
does the graph show onset age or age when the diagnosis was made? how long does it take to get diagnosed on average? if it takes a while there could be a significant delay and then the peaks could occur many years earlier than the graph would indicate.

I understand that graph to be prevalance (i.e. the number of people of each age who have a current diagnosis).
 

Jonathan Edwards

"Gibberish"
Messages
5,256
I understand that graph to be prevalance (i.e. the number of people of each age who have a current diagnosis).

I don't think it can be prevalence, Sasha, otherwise it would seem that everyone with CFS gets better by 60. I am pretty sure it was incidence (the blue and red graph we had up at the beginning).

how long does it take to get diagnosed on average?

I don't see the diagnostic delay being that long. My suspicion is that the majority of CFS diagnoses occur within 2 years of symptoms becoming severe at least and I assume that a good proportion are severe within 3 months of a viral disease related onset.
 

MeSci

ME/CFS since 1995; activity level 6?
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Location
Cornwall, UK
I don't see the diagnostic delay being that long. My suspicion is that the majority of CFS diagnoses occur within 2 years of symptoms becoming severe at least and I assume that a good proportion are severe within 3 months of a viral disease related onset.

I think many of us waited much longer than that. I might never have got a diagnosis if I hadn't demanded it after 5 years.

EDIT:

Actually it was about 4 years following what I tend to think of the onset, but it was so gradual it's very hard to be sure. There were numerous 'hints' of it for years before that.
 
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Sasha

Fine, thank you
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UK
I don't think it can be prevalence, Sasha, otherwise it would seem that everyone with CFS gets better by 60. I am pretty sure it was incidence (the blue and red graph we had up at the beginning).

You're right - you'd think the title being 'two peaks of incidence' would have clued me in but the text around the graph confused me a bit. Thanks!
 

Sasha

Fine, thank you
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17,863
Location
UK
I don't see the diagnostic delay being that long. My suspicion is that the majority of CFS diagnoses occur within 2 years of symptoms becoming severe at least and I assume that a good proportion are severe within 3 months of a viral disease related onset.

Anecdotally, we hear a lot of patients say that their diagnosis took years (sometimes many years). I think quick diagnosis might be more likely in acute viral-onset cases (I was diagnosed within six months) but longer in gradual-onset cases.

I wonder if those two distinct types are reflected in any way in this graph... trying to think what that might look like...
 

Kati

Patient in training
Messages
5,497
I think many of us waited much longer than that. I might never have got a diagnosis if I hadn't demanded it after 5 years.

I agree with @MeSci many of us have not gotten proper diagnosis until we provided our doctors with proper tools for diagnosis, and until we asked our doctors for necessary diagnostics to rule out other diseases. This in itself is a long process considering the physicians are thaught to delay testing thinking that the symptoms will disappear by themselves.
 
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Sasha

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Location
UK
BTW, @Jonathan Edwards - I keep seeing a figure somewhere from US advocates that they think that about 80% (?) of PWME don't have a diagnosis at all. I don't know if more severe cases are more likely to be diagnosed and that that graph is more about the incidence of severe ME than ME in general.