Demographic of MALES!

*GG*

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(But in one way, this is like saying:

If A = B
and B = C,
then A must = C

Statistics only quote what data has been used in the Survey Analysis.

Statisticians forget that D,E,F,G,H,I,J,K,L & so on, up to Z, have not been included in the survey.

If they surveyed ALL people ALL over the world, then D - Z would re-write the Survey results.

(that's my take on it all).

I believe the ratio of men to women with ME/CFS is only a reflection of the survey & statistics at the current time, but the important information is the very fact that ME/CFS (& FM) is clearly male, female, child or adult. The very fact that both sexes & all ages groups are affected, relects that at this time in medical history & research, one can't narrow down a particular type (who is affected).

And while, FM sufferers (I say FM because I know more about my own FM) seem to be high achievers or very focussed & driven individuals, this could just reflect that high achievers are aiming for higher success in their life & are quick to report to their Dr when they fall "ill" & are unable to achieve that striven for "success". Therefore high achievers are more likely to be counted in the survey on FM.

The true result may be that the quieter person (or middle achiever, or non-achiever, or person who is not interested in high achievement as a focus in their life) has not reported their condition or been to their Dr (& may outnumber the FM patients that HAVE been surveyed).
I am not sure of the A should = C item, since this is not just simple mathematics we are talking about, we are talking about our complex bodies and disease. I do agree with your analysis though of who reports and why. FM sufferer also, so perhaps I am an anomaly since Fibro is mostly a women's disease also! GG = Male.
 

Sing

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I dont think anyone has mentioned the implication of X and Y chromosomes in terms of determining the underlying gender of the disease population. It seems likely that since genetics plays a part in this illness - it may well be for example that the common RNaseL upregulation/gene mutation seen in ME/CFS patients lies on the X chromosome and could also be a dominant trait. In circumstances such as this you will get a disease population of women:men around 3:1.

Apologies if gender studies of the RNaseL mutation have already been carried out - i have yet to see or read any myself. I think my thoughts are stemming from Klein's recent talk on XMRV in Prostate Cancer & CFS.


CM
Nobody has mentioned mitochondrial DNA, which I understand is only inherited through mothers to daughters. How I think I know this is that geneticists who try to identify and track inheritance and evolution into the distant past, beyond when ordinary DNA would break down--these geneticists have found that they can study inheritance through mitochondrial DNA which is far, far more stable. This is the DNA that the mitochondria use. Mitochondria are passenger organisms in us with whom we have a very old symbiotic relationship (of mutual services). This form of DNA can only be used to track mother to daughter transmissions. My limited knowledge of biology enables me only to guess now--does this mean that the mitochondrial DNA travels on the X chromosome?

Well, genetically males and females are different enough that there could be some explanation for the preponderance of females with ME/CFS, which I do expect goes beyond the differences in rates of reporting and being diagnosed (also probably true).

AND, studying what causes the difference in males vs females getting it seems like one good way to learn about the mechanisms of XMRV and/or just what is causing ME/CFS.

Am I making sense or is this just my foggy brain?
 

wciarci

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Dr Yes, you changed your avitar! I can adore Ricardo but not a nun, (it would be a sin) so I am off the adoring Dr Yes bandwagon. Such a pity, I so wanted to see you in a Brooks brothers suit. Perhaps you will now be adored by those with a nun or librarian 'issue'.

Interesting thread. I wonder about the differences in the sexes in so many ways. Hormones, check, blood volume, check, XX vs XY, check. Talking vs action, check, muscle mass, check. I really wonder if the males who contracted this disease as children had mothers who were teachers, care givers, nurses. I understand that teachers are 10 times more likely to come down with an autoimmune disease and that viruses are suspected in these illnesses. I also wonder about the possible connection to bi-polar, which shares some similarities.

Interesting thread, not sure that there are answers but some great thoughts and discussions.

Wendy
 

Sing

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wicari, Dr. Yes's avatar is Audrey Hepburn playing the kind, innocent nun in The Nun's Story, who witnessed the cruel horrors of a mental hospital, and yearned to help. So she is like a good angel, perhaps, for those in the Asylum of False Illness Beliefs. But only Dr. Yes knows what he means. I saw this movie as a young teenager and for awhile, fervently wanted to be a nun like Audrey.

But, hormones, having stepped in and done their trick, I am in a position to quite agree with you about Ricardo--devastating!
 

*GG*

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Nobody has mentioned mitochondrial DNA, which I understand is only inherited through mothers to daughters. How I think I know this is that geneticists who try to identify and track inheritance and evolution into the distant past, beyond when ordinary DNA would break down--these geneticists have found that they can study inheritance through mitochondrial DNA which is far, far more stable. This is the DNA that the mitochondria use. Mitochondria are passenger organisms in us with whom we have a very old symbiotic relationship (of mutual services). This form of DNA can only be used to track mother to daughter transmissions. My limited knowledge of biology enables me only to guess now--does this mean that the mitochondrial DNA travels on the X chromosome?

Well, genetically males and females are different enough that there could be some explanation for the preponderance of females with ME/CFS, which I do expect goes beyond the differences in rates of reporting and being diagnosed (also probably true).

AND, studying what causes the difference in males vs females getting it seems like one good way to learn about the mechanisms of XMRV and/or just what is causing ME/CFS.

Am I making sense or is this just my foggy brain?
Not sure if this is quite right? "Nobody has mentioned mitochondrial DNA, which I understand is only inherited through mothers to daughters."

See this: http://forensicscience.suite101.com/article.cfm/what_is_mitochondrial_dna
 

Hope123

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Not sure if this is quite right? "Nobody has mentioned mitochondrial DNA, which I understand is only inherited through mothers to daughters."

See this: http://forensicscience.suite101.com/article.cfm/what_is_mitochondrial_dna
Agreed. Mitochondrial DNA is given to both sons and daughters of an affected mother. However, the grandchildren from a daughter would be affected (if it is simple mito inheritance) and not the grandchildren from the son given that the son's children get their mitochondrial DNA from their mother (not related by blood to the affected mother).

This question has been looked at somewhat indirectly. One published study (albeit not large) asked affected males and females if their parents were affected and which one. It was about roughly equal: about 50% had a father affected, 50% a mother affected. This argues against mitochondrial inheritance although more family studies of CFS need to be done in general.
 

Sing

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Thanks, ggingues and Hope123, for responding to my question about mitochondrial DNA. Here is a relevant quote from the article GG cited:

"Mitochondrial DNA is Only Inherited from the Mother
What sets mtDNA apart is that, unlike nuclear DNA which is equally inherited from both father and mother, mtDNA is inherited only from the mother, because all our mitochondria are descended from those in our mother's egg cells.

This means that Mitochondrial DNA is passed from a mother to her children, which also makes it useful for tracing individuals maternal lineage. So, that while both sons and daughters inherit mtDNA from their mothers, only daughters can pass their mtDNA to their children."

However, this may not turn out to be that relevant for XMRV transmission. I just wondered because of the preponderance of women with it.
 

Dolphin

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Agreed. Mitochondrial DNA is given to both sons and daughters of an affected mother. However, the grandchildren from a daughter would be affected (if it is simple mito inheritance) and not the grandchildren from the son given that the son's children get their mitochondrial DNA from their mother (not related by blood to the affected mother).

This question has been looked at somewhat indirectly. One published study (albeit not large) asked affected males and females if their parents were affected and which one. It was about roughly equal: about 50% had a father affected, 50% a mother affected. This argues against mitochondrial inheritance although more family studies of CFS need to be done in general.
Having a mother with it was seen as a risk factor for severe ME/CFS in this questionnaire study: http://biolmedonline.com/Articles/vol1_4_50-74.pdf and the authors mentioned the mitochondrial angle.
 

Angela Kennedy

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Having a mother with it was seen as a risk factor for severe ME/CFS in this questionnaire study: http://biolmedonline.com/Articles/vol1_4_50-74.pdf and the authors mentioned the mitochondrial angle.

But if you look at those figures (on page 6 of the pdf), while there is a statisticially significant correlation of slightly more mothers than, say fathers (same with offspring), the vast majority of respondents did NOT have a mother with "ME/CFS".
 

Sing

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I only skimmed through this study in biolmedonline to the end where they wrote:

"Family history was a risk factor for severe ME/CFS. The strong association with having a mother with ME/CFS, but lack of association with having a father with the condition, is consistent with ME/CFS being associated with disturbed mitochondrial function. Being female was also a risk factor for severe disease."
 

Angela Kennedy

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I only skimmed through this study in biolmedonline to the end where they wrote:

"Family history was a risk factor for severe ME/CFS. The strong association with having a mother with ME/CFS, but lack of association with having a father with the condition, is consistent with ME/CFS being associated with disturbed mitochondrial function. Being female was also a risk factor for severe disease."
But the figures in their cohort didn't support that claim. The 'association' is small- a common problem in much research findings around 'risk factors' in 'CFS'.

Unfortunately, also, psychiatrists have argued that mother having CFS is associated with CFS to claim a psychogenic explanation for the illness: so obviously a different explanation to 'disturbed mitochondrial function'. One paper even included 'single mothers' in their tables as a risk factor for CFS in children (though from my reading - they included no controls (of 'non-fatigued' - though their definition of 'fatigued' was pretty CDC like: "Over the last month, have you been feeling much more tired and worn out than usual?):

Rimes, K. A. Goodman, R. Hotopf, M. Wessely, S. Meltzer, H. Chalder, T 'Incidence, Prognosis, and Risk Factors for Fatigue and Chronic Fatigue Syndrome in Adolescents: A Prospective Community Study) Pediatrics 2007; 119; 603-609.

The being female as a risk factor is problematic - there's only two genders, for one thing. One of them is always likely to be ascendent. If all the respondents star signs had been quantitatively analysed, there would have likely been some correlation with certain star signs, and EVERYBODY has a star sign. It's always difficult to get an exact equal measure of all the star signs in a cohort. Does this mean that certain star signs are 'risk factors' for 'CFS' if there is a correlation of one or more star signs in a cohort? No (unless you believe in astrology of course!)
 

Cort

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All autoimmune diseases affect more women than men perhaps bc of hormonal differences. for example lupus affects women to men 9:1. I've always just attributed the reported difference in incidence to this. Although there certainly could be other factors like sexism etc. skewing the reporting.
Also I think female predominance persists in fibromyalgia and other mysterious disorders that are allied with CFS such at TMD and interstital cytisus. (See the Campaign to End Chronic Pain in women that the CAA joined". I think gender bias in research is a problem - I don't know how big a problem it is, but having a mysterious illness, the biological cause of which is unknown and having female predominance - probably hurts us I imagine in the more male dominated research world. That will surely change over time as women become more and more entrenched in the sciences.

CFS was moved into the Office for Research Into Women's Health (from the NIAID) - which has no money, not surprisingly - and where it's languished for 10 years and where its budget has declined.
 

Dolphin

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The being female as a risk factor is problematic - there's only two genders, for one thing. One of them is always likely to be ascendent. If all the respondents star signs had been quantitatively analysed, there would have likely been some correlation with certain star signs, and EVERYBODY has a star sign. It's always difficult to get an exact equal measure of all the star signs in a cohort. Does this mean that certain star signs are 'risk factors' for 'CFS' if there is a correlation of one or more star signs in a cohort? No (unless you believe in astrology of course!)
A statistical test can give an idea how likely something was a chance finding - so a chi-squared test (or f-test) of star signs wouldn't have to find them to be exactly the same and still say there was no statistically significant result. If you toss an unbiased coin ten times, often you won't get 5 heads and 5 tails but that is taken account of in the testing. The p value in this case was 0.00023.

Saying all that, who knows what is going on here. The fact that most didn't have a mother with the illness could well be significant. I can also see problems with comparing severe versus mild cases. For the first four years of the illness I was mildly affected. Largely because of a lack of diagnosis (and subsequent lack of support and unrealistic expectations as I was treated as a healthy person), I became severely affected. The mitochondrial genes I inherited hadn't changed as such.
 

Cort

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The point I'm trying to make is that ME/CFS does not belong at the Office of Research on Women's Health even if there are more women that have it than men, which could be for the reasons you list, among others. ME/CFS is not a gender-specific disease. ORWH is doing very little to promote research into the disease. Until there's more research we can only speculate about why it might be more common in women. I guess I'm not much into speculation, but I know others enjoy it.
They haven't even funded a paper looking at why the gender gap exists in these disorders - can you imagine?. The Office on Women's research appears to have no interest in why CFS is found in more women than men. Its PITIFUL....There have been no conferences looking at this........its incredible that the issue has hardly been looked into...there was a positive study on estrogen that was never followed up on, I don't believe. Its kind of mind boggling that the ORWH itself has no interest in this subject. Then, again, they're getting no funding for it.
 

Angela Kennedy

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A statistical test can give an idea how likely something was a chance finding - so a chi-squared test (or f-test) of star signs wouldn't have to find them to be exactly the same and still say there was no statistically significant result. If you toss an unbiased coin ten times, often you won't get 5 heads and 5 tails but that is taken account of in the testing. The p value in this case was 0.00023.
The problem with all statistical tools is that they can't catch actuality, or bias, only 'probability' and 'chance'. It's still beliefs and assumptions that drive certain things to be called 'risk factors'. Chi squaring cannot eliminate bias occurring in the construction for measurement of certain set categories, especially when those are driven by beliefs.
 

Dolphin

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CM's observation about not males being less physically disabled with ME than females i found very interesting as ive only ever come across two males with ME who were wheelchair bound and both those had gotten ME when a child. Even allowing for the male female ratio differences, im surprised i dont know more ME wheelchair bound males. (There needs to be a study done on males who get ME when adults and if the disability level is likely to less than a female).
.....

this site has a much closer female to male ratio than any other CFS/ME site i know.. i think it may be closer male/female ratio here than the not crazy site, so maybe cause there is more research here ..(do guys really like maths, science and research more than girls) ..or maybe cause Cort is active here, where as Leigh isnt really active on his site.
This study had 110 females and 14 males who were severely affected when they did it: http://biolmedonline.com/Articles/vol1_4_50-74.pdf

I don't think I took part (not 100% sure - have filled in a few questionnaires in my time) which would mean I'm another male.

Not sure where I would fit in your theory. I got ill when I was 16.5 years old, fully grown (matured earlyish). I really don't think I had it before then as I played a lot of sports competitively and was high functioning.

On the issue of internet sites: the biggest general (i.e. nothing to do with ME/CFS) internet discussion site in my country (boards.ie) is known to be 85-90% male (can't remember which at the moment). It covers a huge range of interests. So for whatever reason, one tends to find more males on internet discussion forums. Facebook might be different.
 

Dolphin

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Ok cant belive im saying this, but one thing thats being missed by everyone here. Example in many ways ( not all mind lol ) im actually quite feminine. i like flowers tee hee. quite soft and emoitional, dont like violence ect. So maybe my testosterone is low ? are more feminine men diagnosed with ME because of hormones rather than Boxers if you get my drift. another outlandish theory of mine. but seems to make sense to me MAYBE ??????????????????????????????
I think you have to be pretty macho to want to be in the military (and stick at it) (never was my cup of tea even though I was very into sports including contact sports like rugby and soccer): lots of gulf war veterans have CFS.

Although saying that, it is not clear if that is exactly the same as other forms of CFS: ME Research UK investigated did a study which found there was a difference on a test between Gulf War CFS and sporadic CFS - see: http://www.meresearch.org.uk/research/projects/comparison.html