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

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
All very interesting Bob - nice shapes. It shows how complicated it all is. I wonder if the Lyme curve reflects the ages when yo are most likely to be ill enough with Lyme to get a diagnosis - for a reason related to the risk of getting ME bad enough to get diagnosed. I don't think I buy the idea that the second Lyme peak is for the camping holidays with the kids in the first Lyme peak, its a bit too late?

Maybe there would be a delay in diagnosis, as @Woolie suggests. Maybe parents of young children are too busy with their care, or juggling childcare and work, to pay much attention to their own health?
 

Simon

Senior Member
Messages
3,789
Location
Monmouth, UK
Age at MS diagnosis, data from UK GP database

From the open access paper: (figure 4)
Incidence and prevalence of multiple sclerosis in the UK 1990–2010: a descriptive study in the General Practice Research Database -- Mackenzie et al. -- Journal of Neurology, Neurosurgery & Psychiatry
[may be copyright - please don't reuse without acknowledging original source (is available as a downloadable teaaching slide and is used here in that spirit); available online here F4.large.jpg (JPEG Image, 1291 × 1800 pixels) - Scaled (34%).]


upload_2015-1-23_14-49-0.png

Incidence and prevalence of multiple sclerosis in women and men by age (General Practice Research Database 1990–2010). (A) Incidence (per 100k patient years). (B) Prevalence (per 100k patients).
 
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lansbergen

Senior Member
Messages
2,512
Maybe there would be a delay in diagnosis, as @Woolie suggests. Maybe parents of young children are too busy with their care, or juggling childcare and work, to pay much attention to their own health?

I was so busy with the animals I only realised it was more than an ordinary infection when I got fine motor probelms.
 
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Marco

Grrrrrrr!
Messages
2,386
Location
Near Cognac, France
This UK paper (which includes a quality assurance protocol in the methodology) doesn't suggest a bimodal distribution for male or female MS (see Fig 4) : ETA I see Simon beat me to it :)

Incidence and prevalence of multiple sclerosis in the UK 1990–2010: a descriptive study in the General Practice Research Database

http://jnnp.bmj.com/content/early/2013/09/19/jnnp-2013-305450.full

Which is backed up by this paper which does however find two peaks in Hodgkins disease (25-29 and 70-74)

Multiple sclerosis and Hodgkin's disease in Denmark.

http://www.ncbi.nlm.nih.gov/pubmed/1266575

Other bimodal distributions for incidence I've found are ulcerative colitis/inflammatory bowel disease (15-25 and after 60)

http://en.wikipedia.org/wiki/Ulcerative_colitis

and myasthenia gravis (third and sixth decade)

http://pmj.bmj.com/content/80/950/690.full



 

Sing

Senior Member
Messages
1,782
Location
New England
That's a huge and shocking finding. Has he published it?

All I know is what I read on his website and in his most recent book, Missed Diagnoses: Myalgic Encephalomyelitis & Chronic Fatigue Syndrome. He recommends certain ways of checking for this, which go beyond the usual thyroid testing.
 

Jonathan Edwards

"Gibberish"
Messages
5,256
Age at MS diagnosis, data from UK GP database

From the open access paper: (figure 4)
Incidence and prevalence of multiple sclerosis in the UK 1990–2010: a descriptive study in the General Practice Research Database -- Mackenzie et al. -- Journal of Neurology, Neurosurgery & Psychiatry
[may be copyright - please don't reuse without acknowledging original source (is available as a downloadable teaaching slide and is used here in that spirit); available online here F4.large.jpg (JPEG Image, 1291 × 1800 pixels) - Scaled (34%).]


View attachment 9741
Incidence and prevalence of multiple sclerosis in women and men by age (General Practice Research Database 1990–2010). (A) Incidence (per 100k patient years). (B) Prevalence (per 100k patients).

Very interesting graph, Simon. I am interested in the presentation with smooth curves. I suspect these are illegitimate. I think you are allowed to smooth over data but they have done more than that. They seem to have tried to fit some sort of normal curve. The result is that the right end of the first curve is too low for the data and the left end of the second curve is too high, for instance.

I can see no theoretical reason for a perfectly normal curve (or some other statistical curve) for age related incidence. (So I don't think it is legitimate. They should have shown a histogram or a histogram turned into a curve purely by a local averaging out method for each segment.) If the cause was environmental there is no reason for a normal curve across age. If it genetic there is no reason. If it is stochastic there is no reason. A combination might produce a smooth curve but I see no reason for it to be Gaussian.

And this really intrigues me, because the curve is so nearly Gaussian. Moreover, the male curve is just a lower version of the female - no way of blaming menopause or childbirth or anything. Very hard to blame psychosocial factors that would relate to cultural age watersheds. The curve I spent years looking at - the RA curve - is easy because it fits a multistep stochastic process on a genetic risk basis, just like breast cancer. But I had not thought of how one would interpret an MS curve. The more I look at it the more extraordinary it seems. And of course the second bump for ME looks similar. I keep coming back to the idea that these are curves you get with complex biological regulatory systems that have a built in trade off between diversity and stability. Neither looks like a psychosocial curve at all. Surely a psychosocial curve would have some asymmetrical camel-like outline relating to specific rites of passage? OK so everyone agrees that MS is not psychosocial, but the same case ... ...

So for me the bottom line is that before trying to understand ME, somebody needs to have a plausible explanation for the MS curve. Trouble is clinicians and immunologists just don't think systems dynamics. Cancer people are beginning to now, but not neurologists I think. It is so easy to look at a curve and say 'Oh yes, typical Gaussian biological shape'. But hang on, this is completely the wrong set of variables to give that shape - age against incidence.

Hmmm...
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
All I know is what I read on his website and in his most recent book, Missed Diagnoses: Myalgic Encephalomyelitis & Chronic Fatigue Syndrome. He recommends certain ways of checking for this, which go beyond the usual thyroid testing.

That's a pity - I doubt many clinicians (or even patients) are going to look at either his site or his book and if the increased incidence is so astronomical, that's a finding that needs to go through the peer review process and get published in a medical journal where it will be read.
 

Seven7

Seven
Messages
3,444
Location
USA
Well the young one is about same to develop Dysautonomia. As the study says if you have dys you are more prevalent to get Cfs afterwords, so the early pump make sense to me.

I put my money in some hormone so one has to measure what hormone is present or variable at those ages for both men and women.

As of pregnancy in women vs man graph, if you so some Reaserch, the hormones of guys can get affected during pregnancies ( I forgot the name of the syndrome but is when guys experience the pregnancy sickness). Also the sleep deprivation during childbirth is also shared in case that is a factor. Also, in my case we all were sick for the first 2 years w child starting daycare and baby brought home constant stomach flu and other bugs.

So I would not say is not due to pregnancy or child birth! Is an extreme environment for the whole household. Just a thought .
 

Simon

Senior Member
Messages
3,789
Location
Monmouth, UK
Going back to that original graph, and trying to make sense of it

Figure One: twin age peaks:


(this image may be copyright: it's from the linked open source paper above, but please don't reproduce without linking to the original paper and explaining it may be copyright).

I noticed the adult peak is much more pronounced in women than men so sex differences again may play a role in the peaks as well as the relative differences after puberty. The second peak is mid-to-late thirties, possibly extending to early forties. That seems to be too late to be accounted for by childbirth and young children (with stress/sleep deprivation/constant exposure to bugs). The second peak seems to start building from the mid-twenties.

If you were coming at this from a biopsychosocia perspective, would you be able to explain the age peaks, especially the later adult one (the first one would presumably be explained by EBV, and an inappropriate response to it)? Is there something about women in their thirties that would lead to a particuar psychological response?

Ah, @Jonathan Edwards beat me to it:
And of course the second bump for ME looks similar. I keep coming back to the idea that these are curves you get with complex biological regulatory systems that have a built in trade off between diversity and stability. Neither looks like a psychosocial curve at all. Surely a psychosocial curve would have some asymmetrical camel-like outline relating to specific rites of passage? OK so everyone agrees that MS is not psychosocial, but the same case ... ...

For that matter I'm not sure what the biological explanation is either, though maybe it's in some way related to whatever is driving the MS peak .

OK, so I mused, and didn't get very far, apart from noticing the second peak is much more pronounced in women. What is it about women in their late thirties that doesn't apply to men of similar age?

Early peak
2. The first disease does NOT look like EBV, it starts too early.
Looking at the data more closely, the peak childhood years, given that small differnces probablly aren't signifcant, are:
- boys 11-14, avg 12.5
- girls: 13-15 (arguably 13-18), mean 14 or more

while this Scottish study shows mono/EBV cases peak age 18-19 (see Figure 4.)
I think @Jonathan Edwards might have a theory on this mismatch.
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
I noticed the adult peak is much more pronounced in women than men so sex differences again may play a role in the peaks as well as the relative differences after puberty.

Not sure if this is a point worth making but if ME is, say, three times more prevalent in women and you just multiply up the men's figures by three, you'd get a more prominent peak in women just by virtue of that multiplication (i.e. a steeper slope on the peak).

I tried to do that by eyeball and that women's graph looks to me like three of the men's graphs stacked on top of each other.

Not sure if that's the point you were making.
 
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Sing

Senior Member
Messages
1,782
Location
New England
That's a pity - I doubt many clinicians (or even patients) are going to look at either his site or his book and if the increased incidence is so astronomical, that's a finding that needs to go through the peer review process and get published in a medical journal where it will be read.

I agree! I have brought him up lately on a couple of threads here at PR and also on Cort Johnson's site because I think he has more knowledge to offer the field. I believe he is still a solo practitioner and also an older man. I think that someone who is also knowledgable ought either to interview him or to discuss some of the research needs and crititical issues up for us.
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
I agree! I have brought him up lately on a couple of threads here at PR and also on Cort Johnson's site because I think he has more knowledge to offer the field. I believe he is still a solo practitioner and also an older man. I think that someone who is also knowledgable ought either to interview him or to discuss some of the research needs and crititical issues up for us.

Easy for me to say but if he has data showing that the incidence of thyroid cancer is increased a thousand-fold in ME patients then he has a duty to get it into the medical literature, both so that we get screened early enough and so that the non-psychological nature of ME gets further support. I'd like to see that assertion given the once-over by others, too: if there is some bias in his methods of data collection (perhaps due to the nature of his practice or the clinical criteria he uses or his follow-up methods) and it's not a solid finding then we need to have that fear removed from us.
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
Something significant to note in relation to the MS graphs: One illustrates symptom onset, while the other indicates age of diagnosis, so they may not represent the same type of data. This would probably explain the huge difference in the 11-20 age bracket, perhaps indicating that people get a diagnosis years after the initial (often gradual) onset of symptoms.
 
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Bob

Senior Member
Messages
16,455
Location
England (south coast)
A note about thyroid malignancy:

Dr. Byron Hyde of Ottawa, www.nightingale.ca , who has been diagnosing and studying ME patients since the 1980's, has found a far higher rate of thyroid cancer. While the normal rate of thyroid malignancy is 1-15 cases per 100,000, he has found a rate of 6,000 per 100,000 for ME patients.
That's a huge and shocking finding. Has he published it?
I'm pretty sure it's not been published via peer review. The only information I can find about it is here (search the webpages for "cancer"):
http://www.nightingale.ca/index.php?target=aboutdrhyde
http://www.nightingale.ca/documents/Nightingale_ME_Definition_en.pdf
http://www.hfme.org/whyde.htm

This info may be out of date, but perhaps his data is not extensive, and may reflect a certain type of patient that he specialises in, and may perhaps reflect misdiagnosis? It's impossible to tell what it means without seeing all the info:
He additionally noted evidence that, of 240 cases looked at, 10 cases of thyroid cancers have been identified. [This compares to an average rate of 5 per 100,000 people.] All found thyroid complications were type 3 (of 1-4) and he pointed to a huge group he is finding with a volume of thyroid of 13-23 cubic.

http://www.hfme.org/whyde.htm
 

Sing

Senior Member
Messages
1,782
Location
New England
Easy for me to say but if he has data showing that the incidence of thyroid cancer is increased a thousand-fold in ME patients then he has a duty to get it into the medical literature, both so that we get screened early enough and so that the non-psychological nature of ME gets further support. I'd like to see that assertion given the once-over by others, too: if there is some bias in his methods of data collection (perhaps due to the nature of his practice or the clinical criteria he uses or his follow-up methods) and it's not a solid finding then we need to have that fear removed from us.
He was one of the authors of the CCC as well as the editor of the only textbook on the subject of ME/CFS back in 1992, with a knowledge that extended back to some of the few (great) old timers in the field. His own view of the ME diagnosis seems more conservative and tightly delineated than many. With the thyroid cancer findings, he writes in 2009 that his patient database includes over 3,000 patients. I know this finding hasn't become officially established, but, given the source, it seems wise to pursue this association farther.

Now I see your post, @Bob thank you for looking more into it. But it still doesn't seem we know enough about it.
 

NK17

Senior Member
Messages
592
@Jonathan Edwards I keep appreciating how you can pursue hypotheses laterally as well as linearly, and that you are willing to apply your knowledge to our illness, answering what questions you can. It is fun for us "kicking the ball around" with you, and we can use fun!
Ditto, and I shall add that I get an immense satisfaction when I read @Jonathan Edwards posts, I love the thinking out loud and although frequently I lack the knowledge to be able to follow every twist and turn in the reasoning, I still get where he is trying to go and what he's trying to do: help us!
 
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Messages
3,263
Something significant to note in relation to the MS graphs: One illustrates symptom onset, while the other indicates age of diagnosis,
@Bob, I understand that both graphs refer to formal diagnosis: the first to the age at which this diagnosis was first made, and the second the percentage of the population in the different groups currently carrying that diagnosis.

Neither records actual symptom onset, which could be many years before formal diagnosis. This period is a difficult one for people with MS (one blogger referred to it as "limboland"). I saw one statistic suggesting that a third of MS patients get a diagnosis of ME/CFS during this period.