Demographic of MALES!

[taniaaust1]

I have long believed that the male population is not going to doctors to get a diagnosis and is instead self-medicating and gutting it out. Men generally are not as good about going to doctors as women are.

It is true that men are more likely to hold off going to doctors than many women but I think with this illness, it is one people DO go to the doctors for, both males and females, as CFIDS isnt an illness you can ignore as it affects your ability to work etc, one has no choice but to go to doctors with it sooner or later but yeah.. i agree doctors are often reluctant to give this diagnoses to a man. I remember a guy with CFIDS once saying his doctor had told him when he mentioned the possibility of him having CFIDS, his doctor said "You wouldnt have that, it's a womans illness". So he never offically got a diagnoses.

I think they probably do thou have a good idea of the male and female ratios due to big population study done. Also many CFS specialists talk about the ratio.

Look at other CFIDS sites and see the men there. All ages of men with the same horrible tales that the women have. I would venture that the real true numbers for CFIDS sick are about a 50-50 ratio.

You've got me very curious with this comment as i have never seen a CFS site other than this one which have a lot of men in relation to women. Is there truely one like that?? could you please tell me what site?? (very interested to see that as it would make me have to rethink all my views)

 

[taniaaust1]

There's another possibility that occurs to me, in the realm of blatant speculation. We don't know how XMRV is transmitted. So maybe women engage in whatever behavior might be a risk factor for it, more than men. I don't actually think this one is a likely scenario. I mean, I don't think women exchange bodily fluids more or get coughed on more, or wash their hands less, so I can't imagine what those risk factors might be. But it is a possibility. A remote possibility.

Hmmm, maybe it's better if we don't think too much about what behaviors women do more of than men, that might be risk factors. It could get ugly. <we need a ducking-for-cover smiley>

i love to spectulate all possiblities and just thought of a behaviour which women do do more. We tend to touch people more.. think of women and women friends.. more likely to touch each other. i have girlfriends who even like to hold handds when they are heading to a public loo (who here has gone to public loo with a female friend).... that's not something guys tend to do with each other unless they are gay. A women is more likely to touch too other peoples children. (thinking of how many babies i've touched on the cheek and said... "that's a cute baby").

hands can spread many germs, if spread throu saliva would a female be more likely to spread on hands (i know my hands get contact with my saliva.. eg a nibble on a nail). (i really thou think it's more likely that more women have this illness due to our body differences to men).

 

[taniaaust1]

Well, now you know at least 3. :Retro redface: I got ill when I was 18. I was mostly housebound at first but for the past year & a half I've been completely bedridden and need a wheelchair for any distances further than the bathroom down the hall.

It personally think it's rarer for men to come down with this illness so severe, but certainly it happens (as I can obviously attest to. :tongue

I believe I have been "ill" for as long as I can remember (so at least since early childhood), as I have always had very, very mild symptoms (lowered stamina compared to my peers, immune system, trouble waking, cognitive problems, etc) which all increased right before I caught mono and came down with full blown ME/CFS/WTF. However, it wasn't until sometime (maybe towards the end of the first year) of being sick that I had ever really thought deeply about or saw a connection between all these things.

It's almost as if I've had some sort of immune dysfunction or perhaps a viral infection lying hidden inside me for a long time (maybe both.)

Incidentally, I tested positive for XMRV+ back in May.

@ "I believe I have been "ill" for as long as I can remember (so at least since early childhood),". That backed up my thought of guys arent seeming to be hit as hard unless they get it when a child. Sounds like you had it there.. simmering away, awaiting to be properly triggered.

 

[muffin]

Genetic does play a role in CFIDS

I think there is a rather large subset of CFIDS sick that have the genetic underlay for CFIDS and then the planets line up (damaged immune system from long-term stress (mental/phyiscal) and then a virus or viruses. Bang!

I too had many of the same symptoms of CFIDS going way back to early childhood. BUT it took years of very serious stress from work/home life w/ a dying MIL, a second grad degree, etc. and then a virus that both my husband and I got at the same time to really kick off the very worst of all the symptoms. Although I was a hyper type A personality, I did have only an "on/off" switch and no ability to rest and relax. It was either move or drop to sleep. Now it is sleep huge amounts and then move for small amounts.

See Dr. Jonathan Kerr and others on the genetics involved in CFIDS. The had identified something like over 80 (?) different genes that were either upregulated or down regulated. But again, I do think the genetics are a subset (albeit a large subset) while the others who come down with CFIDS MAY have gotten it through blood transfucions, contact with others (spouses), etc.

 

[Cookie Monster]

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

 

[muffin]

COOKIE MONSTER: Tough for me to understand since I hated science! Women have two X Chromosones. Men have an X Chrom and a Y Chrom. So does that mean that women would have a higher rate of CFIDS if the damaged genes transmit through the X Chrome (If from both parents)? My Father had Fibro (me too) and he may have had CFIDS. The last 20 years of his life were just work and rest/sleep. No diagnosis since there was none then. So, does that mean that I could have gotten a double whammy from both parent's X Chromes? Might that explain why I am so severe? Maybe if someone got only one damaged X Chrome their severity of CFIDS might not be as bad????

So how/where does the prostate cancer come into this?

Sorry, but I so don't understand the science behind all of this. Thanks for bringing this up though. Might try to understand this if the brain will function.

 

[Cookie Monster]

So does that mean that women would have a higher rate of CFIDS if the damaged genes transmit through the X Chrome (If from both parents)?

My Father had Fibro (me too) and he may have had CFIDS. The last 20 years of his life were just work and rest/sleep. No diagnosis since there was none then. So, does that mean that I could have gotten a double whammy from both parent's X Chromes? Might that explain why I am so severe? Maybe if someone got only one damaged X Chrome their severity of CFIDS might not be as bad????

Muffin - Please see this link - there is a section on X-linked dominant genes http://en.wikipedia.org/wiki/Genetic_disorder

It dont think it works quite like you suggest,

Son of man with trait = no passing on of mutation/trait
Daughter of man with trait = guaranteed passing on of mutation/trait
Offspring of woman with trait = 50% chance regardless of sex
(Offspring of woman with double trait = guaranteed passing on of mutation/trait - but a considerably rarer occurrence than the other options)

Klein's talk on XMRV mentioned three common gene mutations related to our antiviral defense that are predictors for men in getting Prostate Cancer. One of these, RNaseL, he mentioned was interesting because there is a common defect in ME/CFS with regards to this mutation. However, instead of being downregulated (in PC) the RNaseL activity is strangely UPregulated in ME/CFS patients.

When you throw XMRV into the mix it may be that a person needs to have this genetic mutation in RNaseL as well and be infected with the virus for ME/CFS to be able to occur. This may explain why there are as many as 10x the number of XMRV infected people in the population compared to those who actually have developed ME/CFS.

I expect its a much more complicated genetic puzzle than i have suggested - Jonathan Kerr's work probably indicates that as i think he identified many different genes that he felt were possibly implicated. I think my brain just likes to work with the more simple explanations lol.

CM

 

[dannybex]

I think there is a rather large subset of CFIDS sick that have the genetic underlay for CFIDS and then the planets line up (damaged immune system from long-term stress (mental/phyiscal) and then a virus or viruses. Bang!

I too had many of the same symptoms of CFIDS going way back to early childhood. BUT it took years of very serious stress from work/home life w/ a dying MIL, a second grad degree, etc. and then a virus that both my husband and I got at the same time to really kick off the very worst of all the symptoms. Although I was a hyper type A personality, I did have only an "on/off" switch and no ability to rest and relax. It was either move or drop to sleep. Now it is sleep huge amounts and then move for small amounts.

See Dr. Jonathan Kerr and others on the genetics involved in CFIDS. The had identified something like over 80 (?) different genes that were either upregulated or down regulated. But again, I do think the genetics are a subset (albeit a large subset) while the others who come down with CFIDS MAY have gotten it through blood transfucions, contact with others (spouses), etc.

Muffin -- do you mean 'genetic expression' instead of 'genetics' playing a role? It's my understanding that the differences they've seen are due to the way genes express themselves (change) due to the various stressors/triggers, etc.

???

 

[dipic]

@ "I believe I have been "ill" for as long as I can remember (so at least since early childhood),". That backed up my thought of guys arent seeming to be hit as hard unless they get it when a child. Sounds like you had it there.. simmering away, awaiting to be properly triggered.

Yep, that's what made me mention it.

 

[alex3619]

Hi Muffin

Women have two X chromosomes, but in any one cell only one is active (if I remember my genetics lectures correctly). The other is silenced. A cell with two active X chromosomes dies.

On another issue, I think that low testosterone production in males and females may be due to XMRV targeting hormone making cells - just a thought. Another possibility is that these cells are being attacked by the immune system, but I think this is unlikely because it would probably make males infertile. The real question is: is there any evidence that female hormones are low in ME or CFS patients as well, (for moth males and females)?

bye
Alex

COOKIE MONSTER: Tough for me to understand since I hated science! Women have two X Chromosones. Men have an X Chrom and a Y Chrom. So does that mean that women would have a higher rate of CFIDS if the damaged genes transmit through the X Chrome (If from both parents)?

 

[muffin]

Oh COOKIE MONSTER AND DANNY!

I have NO clue about genetics, genes, genetic expressions, etc. Not a clue and I admit it.

Are we not born with some of those genes damaged and then it takes something to up or down regulate them?

Can a virus or other pathogen damage a normal gene and cause it to up or down regulate? Would that explain someone like my husband who I think does NOT have any genetic involvement but got something from me and then got a virus (a simple virus or even XMRV) and then he got sick?

I so don't understand any of this. Sorry. Have to go back and try to read and understand genetics. I was a Government Major (Soviet/East European Studies; US Defense Policy/Program Analysis (MA); International Transactions/Trade (MA) -- so math and science are not in my bag of tricks. Actually, there isn't much left in my bag of tricks anymore!

You guys discuss this between you and I will read and learn. But I have to keep my mouth shut when it comes right down to the nitty gritty of genetics. Thanks guys-

 

[dannybex]

Gender percentages in the Science study...

I don't know either Muffin re genetics / genetic expresion...that's just what I recall. I'll try and find someone who knows more...maybe Rich?

In the meantime,I did find this quote on the Science (XMRV) study:

"Patients in the study were 67% female, reflecting the reported gender incidence of CFS, with an age distribution of 19 to 75 years of age (mean of 55). The healthy control population, which was similar in age and gender to the patients, was composed of healthy people who visited doctors offices in the western United States between 2006 and 2008."

And for what it's worth, when I'm able to attend our support group meetings, the attendance can vary of course, but it tends to be about 65-75% female / 25-35% male.

 

[*GG*]

Is this because the demographic statistics are incorrect or because for whatever reason a greater than expected number of males come to this site?

Not sure, cannot recall what brought me to this site, but glad I found it!

Very helpful and have gotten many ideas from here to bring to my doctor!

 

[The Phantom]

Phantom

You are right, the different definitions probably lead to lots of ambiguity that skews the numbers. However it is extremely probably that more women than men suffer from even the most rigorously defined version of ME/CFS for numerous physiological reasons. If ME/CFS is caused by a virus, this of course does not imply that more women are exposed or even infected. INFECTION rates would be closer to equal. However women's bodies would, for reasons already known to science, have more trouble fighting it if exposed.

AIDS provides a useful example to study:

1. With sexual transmission (quite probable for XMRV) women are more easily infected with HIV than men because.... well.... is a description really needed here? So this means that when in sexual contact with an infected partner, the chance of male to female transmission is higher than the chance of female to male transmission. Does this mean that female to male transmission does not occur? Of course not. However probability of infection is higher from male to female in a single encounter. This is known for HIV, and is probably true for XMRV, which very recent research suggests is likely transmitted sexually. (though this may not be the only means of transmission)

2. It is known to science already that once infected with HIV, the progression of immune deficiency is faster in women than men because of immunological differences and differences in blood volume. This would hold true for any viral cause of ME/CFS as well. So, knowing for example that XMRV is a low copy, slow replicating virus, it is entirely likely that the faster progression of the disease in women would make us more likely to reach the tipping point that would create the full symptom cascade of ME/CFS once triggered. Extrapolating for XMRV - Many men who are infected with XMRV may die of old age before the viral damage to their systems is significant enough to create the conditions for ME/CFS - if XMRV proves to be the cause of immune dysfunction in ME/CFS.

3. The lower capacity of the female body to detoxify makes it more likely that once infected with any pathogen causing immune dysfunction, our bodies would have more difficulty recovering because the load on our immune systems is already higher. The extra toxins and immune system irritants would then also make it more likely a latent infection would be triggered or reactivated.

I think I said that I haven't reviewed the epidemiological literature. I agree that there are probably more women that have ME/CFS than men using any definition. The statistics given above about the gender distribution in the Science paper are certainly relevant. However, regarding your AIDS analogy, is AIDS considered to be a disease of women? I don't think so. Have the millions and millions of dollars U.S. taxpayers have invested in AIDS research come through the Office of Research on Women's Health? No.

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.

That said, if there's about to be a big paper verifying the association (not yet causation) between XMRV and ME/CFS this may well be a moot point. My guess is that research money will start to flow in amounts we've never experienced, and we will soon see the ORWH's role diminish if not disappear. Hopefully, we won't have to waste any of our limited energy on this particular problem--it will simply go away. The threat of a contaminated blood supply tends to focus our scientific institutions' attention. So, never mind. For the time being, anyway. We shall see what we shall see.

 

[awol]

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.

ok. I'm not in the states so did not know this. Thx.

 

[Angela Kennedy]

Another issue here around Gender is that there are only two of 'em. If we analysed the astrological star signs of sufferers of any definition, there would likely be a preponderance of one or more signs in sufferers (out of 12 possible star signs).

It would not mean that there was more liklihood of getting 'CFS' if you were a Scorpio, or whatever, even if there was a huge correlation.

With Gender - there's only two variables- it's easy to find correlation. But doesn't mean causation.

Unfortunately - especially around how it is diagnosed by DOCTORS, whether 'CFS' or the historical 'hysteria' or 'neurasthenia', what might be prejudice in DIAGNOSIS easily gets assumed as RISK FACTOR. Because there are so many ideological assumptions about gender, it's all too easy to try and use these to explain what might just be a correlation for other reasons.

FWIW my money is on the tendency to describe 'CFS' as 'medically unexplained' and 'psychogenic' by default by the medical profession, related to the ease in which women's illnesses can often be trivialised and dismissed. It ties in the with fallacious medical reasoning around 'hysteria' and 'neurasthenia' so it has precedence. But I accept that even that explanation I have just given needs to be tentative and not assumed as fact.

 

[taniaaust1]

Can a virus or other pathogen damage a normal gene and cause it to up or down regulate? Would that explain someone like my husband who I think does NOT have any genetic involvement but got something from me and then got a virus (a simple virus or even XMRV) and then he got sick?

-

Yes.. DNA (a gene consists of like a strand of DNA) can be damaged by a virus or pathogen

 

[Victoria]

Very interesting thread subject & even more interesting theories. I'm eager to tune in for more posts.

(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).

As a female (I think I'm a female :worried, I signed up to the Phoenix Forum because I had been subscribing to Cort's newsletter for a long time. When he announced the forum, I signed up (not knowing what I was getting in to). I thought there might have been far more females, than males, but recently I have been more aware of males posting.

(And I have since found that many internet names & avatars give no indication of the sex of the post writer. I have been caught out 2-3 times on this forum, already).

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).

Gee, I'm getting confused now. But I hope you all know what I'm trying to say.

I guess we could go around in circles for days trying to offer theories.

(It's still an interesting thread).

 

[Dr. Yes]

Are we not born with some of those genes damaged and then it takes something to up or down regulate them?

Hi muffin,

As dannybex mentioned, the level of gene expression was the only thing measured in the Kerr study. We don't know if the differences are due to mutations in those genes or to some external controlling factor altering their expression (or some combination of the two).

Can a virus or other pathogen damage a normal gene and cause it to up or down regulate? Would that explain someone like my husband who I think does NOT have any genetic involvement but got something from me and then got a virus (a simple virus or even XMRV) and then he got sick?

Pathogens, particularly retroviruses, can damage (mutate) genes, but also can directly or indirectly alter their expression without causing mutations. Retroviruses - particularly, it turns out, XMRV - can do both. XMRV can insert itself just about anywhere in your DNA, but vastly prefers regulatory (start transcription, etc) sites - in specific parts of the genome - that serve as the "on/off" or "volume control" switches for their genes. The mere presence of the virus there can disrupt the normal expression of those genes, up or down-regulating them.

Also of note, as Gerwyn had pointed out, a couple of the genes XMRV is known to prefer to insert into are themselves essential 'regulatory genes', sort of like master switches that control the regulation of many other genes. Interestingly, Kerr found altered gene expression in at least one of these genes (the CREB-BP gene) in CFS patients. So there is the possibility that XMRV could throw off the expression of a great many genes without actually having to insert into all of them. In a hypothetical scenario, an infected person could over time (after initial infection, as XMRV inserts itself into more key genes in more of the person's cells) develop a disease without any specific inherited genetic mutations.

Of course there is also the possibility that XMRV could induce disease by its own gene products (immunosuppressive or neurotoxic envelope proteins) or other means, although that would require replication of the virus (i.e. non-latent virus).

 

[Dr. Yes]

On a more playful note, remember when Dr. Yes was bantering with us, how he attracted hordes of adoring women? That to me suggests a real preponderance of women with ME/CFS.

The same percentages, however, have been reported with healthy controls. :Retro wink: