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A Little Poisoning Along the Road to ME/CFS
Looking at my symptoms, many of which are far less these days and some are gone, it would be easy to figure that I'd just been dealing with some heavy-duty menopausal issues.
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Demographic of MALES!

Discussion in 'General ME/CFS News' started by Francelle, Jun 21, 2010.

  1. Angela Kennedy

    Angela Kennedy *****

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    I think we need the verifiable evidence (if there actually is any) of this claim that more women are affected with... well what? then men.

    Which reference sources are we referring to here? How many?

    My fear is that there is a lot of possibly, indeed likely, untenable gender assumptions being made here, and this mirrors those in the 'literature'- which are mostly highly flawed at best.

    Loads of psychiatric paradigm based literature on any somatic condition (including just pain) is full of untenable ideological gender assumptions that get passed off as fact on the strength of their utterance in a peer review paper alone.
     
  2. ixchelkali

    ixchelkali Senior Member

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    Yeah, but what y'all lack in quantity, you make up for in quality.:Retro wink:
     
  3. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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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.
     
  4. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    we certainly have seen full well the ability of unscrupulous psychiatrists to warp the 'scientific' literature, so i agree, angela, we can't accept the conventional wisdom, as repeated in the literature, facially as true without examination.
     
  5. muffin

    muffin Senior Member

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    IF the CDC and their overpaid contractors, ABT Associates, had done their job over the past decades, we would actually have real numbers of sick and the breakdown of men, women, and children.
    This IS the job of the CDC: to track diseases like this. But they have not done this and there are reasons for NOT keeping track of all the real numbers. We need to get Congress to ask them WHY they did not keep track of those numbers. WHY!?!
     
  6. Greggory Blundell

    Greggory Blundell *****

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    Why? I don't know for sure, but I can speculate. Perhaps a cavalier indifference peppered with a liberal lack of accountability. Pure speculation, though.
     
  7. ixchelkali

    ixchelkali Senior Member

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    If XMRV turns out to be the root cause, this is the sort of question we'll be able to answer with good epidemiological studies. Maybe there's a gender difference in the way XMRV presents itself, like maybe in men the virus settles in to work in the prostate. Not finding a prostate in women, it picks its second-favorite tissue cells.

    My guess is that we'll find that XMRV is responsible for a spectrum of illnesses, such as Gulf War syndrome, maybe chronic Lyme, autism, some fibromyalgia, multiple chemical sensitivities, and who knows what else. Some of them have more women, some have more men, so maybe it evens out.

    With the current definition of ME/CFS, I'm convinced there is gender bias in diagnosis. It's harder for men to get diagnosed when they have what is perceived to be a "women's illness." My neighbor had all the classic symptoms of lupus, but it took hims years to be diagnosed, because "men don't get lupus." It becomes self-fulfulling. And I think many doctors see CFS as a throw-away diagnosis, a name to give what they think is hypochondria, and they're more apt to discount women's complaints that way.

    And I also believe that it's possible that women might be more persistant in seeking a diagnosis. Maybe when men get that "All your tests are negative, there's nothing wrong with you" from the doctor, they're more apt to say "Oh, okay then," and go away until they are completely disabled.

    I do believe that when we have a standardized XMRV test, it may give us the answers to questions like these. Lots of grad theses available to be done.
     
  8. free at last

    free at last Senior Member

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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 ??????????????????????????????
     
  9. usedtobeperkytina

    usedtobeperkytina Senior Member

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    free, while I disagree with your hypothesis, I did enjoy reading it. I found it humorous.

    I'll just stand over here to get out of the line of fire.

    Tina
     
  10. Greggory Blundell

    Greggory Blundell *****

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    To say the least, um, I dont think so as my children can attest. Fair question, though, with the testosterone level I think clearly at play at some level. But I doubt it. I think we are fairly representative across all boundaries. I even think the female to male ratio logic smacks of poor methodology and rich in myth. I think when all is said and done we are a diseased microcosm of the human universe reduced to caracitures of fear, and all too common, desparation. But we are a reflection, demographically, of the healthy at large - just not so healthy.
     
  11. muffin

    muffin Senior Member

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    Actually, I think both men and women's testosterone levels drop with CFIDS, as do most of the other hormones, etc. My test. levels were so darn low and my doctor said he would not even know how to treat them - he had no clue how to bring a women's levels up to normal. I did take bio-identical testosterone and it just made me nasty. No energy, just angry and combative. My husband's levels also were low and they got him the cream but that did nothing for energy or anything else. He's still on that couch without energy or normal sleep.

    So, probably the levels drop AFTER we get sick due to all the complicated damage going on in our bodies.

    Bottom line: I know or have encountered too many men that had normal levels pre-CFIDS (or even really HIGH levels, if you get my drift). So FREE, don't beat on yourself or question whatever it is your questioning yourself about. You and we got sick from a combination of things. This is a horribly complicated disease and it affects all systems in the body.
     
  12. ixchelkali

    ixchelkali Senior Member

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    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>
     
  13. dipic

    dipic Senior Member

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    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. :rolleyes:
     
  14. The Phantom

    The Phantom Member

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    I agree with Angela that we really don't know if more women have--what? Ramsey-defined ME? Canadian Consensus-defined ME/CFS? Fukuda-defined CFS? Reeves-defined Chronic Fatigue? Idiopathic chronic fatigue? XMRV? It seems to me I remember one epidemiological study that actually showed more men have it, but I could be remembering wrong. I haven't sat down and read the epidemiological studies and analyzed them with this specific question in mind (and I'm not likely to be able to) but my impression is that most of the studies are pretty bad. Does anybody know what the gender ratio was in any of Jason's studies? He's careful about definitions. And he's a man who has had the disease.

    I think this is a very important question on a number of levels. It may help us to understand cause(s), as has been pointed out. It may result from various aspects of gender roles, as has been pointed out. What hasn't been pointed out, although I think everybody knows this, is that it affects research funding levels. Specifically, at the NIH responsibility for research funding lies on the Office of Research on Women's Health. In my opinion, it doesn't belong there. This is not a women's disease, as is evidenced by the many severely affected men on this forum. Under the leadership of Eleanor Hanna and Vivian Pinn, ME/CFS has received less research funding than almost any other disease. Some years it's been at the very bottom. ME/CFS received no additional funding under the Recovery Act. It's in the wrong place at the NIH, both conceptually and practically.

    I know everybody already knows this, but I just want to emphasize that calling ME/CFS a women's disease has some very negative economic consequences. It isn't a women's disease.
     
  15. free at last

    free at last Senior Member

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    Ok was just a idea i was throwing in, what i lacked in science Tina looks like i made up for in tickling you he he, So hope i can be forgiven. one day im gonna have a brainstorm you know. Who knows maybe i already have but no one is listening.
    The flux capictor Tina the flux capicitor
     
  16. free at last

    free at last Senior Member

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    Like a lot of my ideas they lack a full understanding Muffin, so i probably shouldnt speculate, But clues are clues and i try. often wrongly it seems. If i can be tolerated untill my breakthrough then i thank you all
    Cheers Tina and Muffin
     
  17. Greggory Blundell

    Greggory Blundell *****

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    ixchelkali. I'm thinking no. Smacks of self-recrimination, although I know it's not your intent. Method of transmission is meaningless on an ethics metric of any calibration (unless deliberate). And I know you weren't out and out saying that. Just seemed to haunt your passage, or my likely, my misplaced inference. Trite, but I think there's merit to the idea you should always move forward like the shark striving just to stay alive by swimming. Our ocean is a small one, but it is growing, and so is our sphere of ...influence.. Hillary Johnson smacks of the right stuff alluded to be Tom Wolfe,and I swim accordingly.
     
  18. ixchelkali

    ixchelkali Senior Member

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    Actually, no recrimination meant, self or otherwise. When I thought about "risk behavior" I didn't attach a value judgement to it, maybe because we don't know what might be risky. But I appreciate your take on it, Greggory. I'll have to remember to be careful in what I may say about such things in the future, because even if I attach no judgement or recrimination to it, someone else reading it might. I guess one of the things about the possibility that this is caused by a retrovirus that haunts us in the shadows of our minds is "have I given this to someone else? Who might I have infected, and how?" So thank you for reminding me that I shouldn't speak lightly of transmission.

    I have a strangely twisted sense of humor that gets me trouble, and it's even worse on a forum, where there aren't even vocal inflections to give a clue that I'm not serious.
     
  19. awol

    awol *****

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    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.
     
  20. Greggory Blundell

    Greggory Blundell *****

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    That we can still embrace humor says much I think. :) Sorry I misinterpreted.
     

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