Despite Our Losses, People with ME/CFS Want More
We've been cheated by ME/CFS and we all know it. That's a no-brainer, if you'll pardon the cognitive pun. And loss didn't just result from the bad things that befell us. It also encompasses the good things that just ... never came. The absence of bounty. Of wholeness. Of peace.
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Demographic of MALES!

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

  1. Francelle

    Francelle Senior Member

    Victoria, Australia
    I have absolutely no idea where my question/comment can fit into this forum as none of the topic headings seem to accomodate such a general, as this is the only section that uses the word 'general' ..... then here goes!

    Contary to statistics usually touted for demographics related to M.E./Fibro occurence among the sexes, this site seems to have an inordinant number of males who visit and post! Is this because the demographic statistics are incorrect or because for whatever reason a greater than expected number of males come to this site?

    Does being headed up by a male (Cort) attract more males?? Just fascinated (& pleased) by this!!!
  2. Binky123


    Sometimes I wonder if the population of males is underestimated.

    Personally I was drawn here by the focus on science, research, interviews, etc. I used to post on immunesupport a couple years back, but this forum is better.
  3. V99


    It may have to do with who uses the internet, and who joins a forum. Probably has nothing to do with ME.
  4. Cookie Monster

    Cookie Monster

    I think you make good points here Binky. I also think the male physiology of increased muscle bulk will mean many men could be less physically disabled by ME therefore possibly still able to be mobile enough to work to some degree providing their brainfog & pain isnt too bad. Thats my experience anyway - i certainly havent read of any chaps using aids like scooters etc on forums i have used.

    I also think more women are drawn to forums that emphasise emotional support and that isnt something i personally feel helps me to read loads about as a bloke. Again, the focus on research etc here is a big lure for me.

  5. garcia

    garcia Aristocrat Extraordinaire

    There are way more women on here than men, which kinda makes the question null & void.
  6. taniaaust1

    taniaaust1 Senior Member

    Sth Australia
    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.
  7. Mark

    Mark Former CEO

    Sofa, UK
    I think gender may turn out to be the most crucial aspect to full understanding of XMRV. Prostate cancer and autism, predominantly male, ME predominantly female. But is that about diagnosis bias? Are these conditions all related and take different forms in men than they do in women? There is obviously something fundamental there to be unravelled.

    My early impression of this site was that I assumed a lot of people were male who turned out to be female. I do get the impression there are more men here in the last few months than before, or perhaps, less women...or perhaps the men feel more comfortable posting...but when I joined I did think there were a lot more women here than men.

    I do think from my own experience, though, that the idea that men are less likely to be diagnosed could be true. I myself have never been diagnosed by the NHS, only diagnosis I have is MCS (not through the NHS of course) and my doc once warned me that I really didn't want an ME/CFS diagnosis as it wouldn't do me any favours at all. I think that once the condition has been defined as mostly affecting women, that inevitably becomes a factor in doctors being less likely to diagnose it in men. Instead, I have an "ideopathic immune disorder".

    I also think its very likely that in general ME/CFS is more severe in women than in men because XMRV replicates when hormones fluctuate, which obviously makes it much more difficult to manage for women.

    But on balance I think there are still way more women here than men, as Garcia says. Perhaps a simple poll on this page would be interesting?
  8. awol


    1. gacia is right. There are WAY more females than males on this forum.

    2. It is probably entirely true that ME/CFS is underreported in males who have mild to moderate cases, however there are a number of reasons why females are simply more susceptible to this illness. The statistics are not that far off.

    3. Males DO tend to be more inclined to announce their opinions (informed or not) and to get into technical discussions on forums. So the number of memorable (if sometimes inaccurate) posts by males is not representative of the relative membership levels as a whole.
  9. Sing

    Sing Senior Member

    New England
    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. We live in a psychological ghetto, in a sense, and so having a man play the attractive, ironic figure who not only understood but could turn the angst into laughter was great fun. Of course, the men here could play along too, and did--Dr. Yes could share the limelight--but it always seemed to be mostly us women keeping this going.

  10. muffin

    muffin Senior Member

    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. Next, I also fervently believe that the doctors out there diagnosing and treating CFIDS have a conscious/unconscious bias that really, only women get CFIDS and so men are not being diagnosed anywhere to the real numbers they should be. That's just not fair since those men need a correct diagnosis and treatment. Bias is at work here and it started with the CDC fools even though I bet the Incline Cluster numbers for males was prob. evenly represented. Would have to look that one up though.
    Look at my husband. Almost all the classic CFIDS symptoms and yet my own CFIDS doctor diagnosed him with "burn out". I could NOT believe this! So the doctor and I had a go around with me insisting that he had a subset of CFIDS and the doctor saying he was "burned out". So, if a super well-informed physician who actually does have male CFIDS people makes this type of assumption, then what will other uninformed doctors do with a sick male with CFIDS symptoms? Burn out? Mental issues? Other unexplained neurological issues?

    It is a crime that the CDC did not do their real job in getting at the true number of CFIDS sick in the US including the number of MEN and CHILDREN. The CDC did NOT want those numbers accuratetly discovered and reported and there were reasons for that. They wanted CFIDS to remain a neurotic women's disease so that it stayed way under the radar. You think up the reasons they would do that. Hiding something, perhaps?

    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. We can thank the CDC/CFS/Reeves et al and Weasel, White el al in the UK for sticking it badly to men. Sorry guys, but you deserve way better in diagnosis and treatment than you have been given.
  11. usedtobeperkytina

    usedtobeperkytina Senior Member

    Clay, Alabama
    Likely, more men than women have been diagnosed. (Remember, according to CDC, 80% of CFSers haven't been diagnosed, both genders.) In US, many CFSers are misdiagnosed as depression. With such aversion to diagnose by the doctors, men may be looked over more, since CFS is seen as a woman's disease. But, the reverse may be true, the woman may be more likely to be misdiagnosed as having depression than a man (who are more believed).

    If there are more men on this forum, I think it is the overall scientific debate and discussion that attracts them, while other discussion forums seem to have emotional impact discussions.

    Another factor, though, is that women still feel and are considered to have more duties at the home, despite the sexual revolution. As has been reported in news media, when women went into the workforce, the men generally did not come into the kitchens. Women ended up with double duty. It's better than in previous decades. But I think there is something inherent about a woman connecting her identity to her house and family and a man connecting his identity to his job. So when illness disables people, my theory is that the females of those patients will feel they still have work to do at the home, including caring for children. So what little energy they have may go to these domestic duties instead of computer stuff.

    Of course, I could be totally wrong.

  12. CBS

    CBS Senior Member

    Is CFS a bigger stigma for men than women?

    "Men don't get tired" and the CDC has portrayed CFS as being relatively benign and tied to depression. The NIH tops that off by assigning this disease to the Office of Research on Women's Health.

    Maybe what we're seeing, at least to some degree, is that men don't accept the CFS Dx until they've joined the ranks of the sickest of the sick.
  13. L'engle

    L'engle moogle

  14. awol


    repeating myself a bit, but have a sense my earlier message was ignored:

    Male cases are possibly more likely to go unreported to doctors, but female cases are more likely to be treated glibly or misdiagnosed as depression (also more common among women). So neither underreporting nor misdiagnosis accounts for the different statistics. There ARE however, very real physiological reasons why women are more susceptible. THE STATISTICS ARE PROBABLY NOT FAR OFF. More women than men do get ME/CFS.

    - Women naturally have a different stress response than men, affecting the function of the HPA axis.
    - Women naturally have a lower blood volume than men, affecting their ability to effectively clear toxins and hormones, and likely stimmulating XMRV
    - Women's bodies go through steeper hormone cycles that put stresses on almost all organs as well as the immune system. This is why on average we tend to have higher ESR, meaning higher inflamation.

    I am sure this list could be extended. But the point is, no point speculating too much on conspiracy theories or sexism. There are physiological explanations. There are more female cases, but men on forums such as this are more vocal. I think the women are browsing, just less likely to put forward their opinions. I am an exception. ;)
  15. muffin

    muffin Senior Member

    CFIDS in men and women

    Although AWOL makes some very good points, I have to agree with CBS on this one.

    I am still willing to bet that the real numbers for men:women are close to 50:50, all things taken into consideration. But we won't know until someone does the real research and that will not be the CDC. They don't like keeping track of figures. Anyone seen the last numbers for Swine Flu? The CDC webpage for Swine Flu numbers is now archived and not updated as of 18 June. Gee, why would that be? CDC also requested that doctors NOT test patients for Swine Flu as of 31 August 2009 and just assume and treat as a Swine Flu sick. Again, how come? JAM thos numbers up so they can continue to get funding for a trumped up, faked out flu. And by the way, this flu funding for the CDC goes back to the 1970's. Anyone aware of that one????
  16. heapsreal

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  17. jimbob

    jimbob ME/CFS84-XMRV+

    myrtle beach, s.c.
    I have to go both ways (sorry about that). I think it might be closer to 50/50, however every support gp i've been associated with or looked into is primarily women. I think men do try to gut it out and maybe don't go a dr. when they should. I don't know about the severity between the sexes, but I do know that, the male usually being the primary bread winner, makes it tough to live with.
  18. Hope123

    Hope123 Senior Member

    It's hard to say what the ratio is since the vague definition of CFS, men's propensity to avoid doctors compare to women, bias in viewing women's illnesses by healthcare staff, etc. may all play into this but it has been pretty consistent that the ratio of women to men is 3:1 or 4:1. This is seen even in the outbreaks that have been looked at and even in the recent (but relatively small) mono kids follow-up studies where all affected after 2 years were girls and not boys.
  19. awol


    I'm sorry, but I seriously object to a few suggestions made here

    1. The idea that somehow men are able to tough it out while women are not. BS. This is a very debilitating illness, and men who have it are no more able to tough it out than I am.

    2. The idea that admitting to being sick and disabled is somehow harder on men so they deny being ill more than women. Again, BS! Nothing have ever been harder for me than the gradual deterioration of my career and my identity because of this illness. I have not given in with any less fight than any man ever would because I am a woman. In fact if anything it was harder because I had to fight so much harder for that career in the first place.

    3. That men being more vocal on forum arguments is equivalent to them making more of an effort to work it out for themselves. BS again again! Vocal presence on an internet forum does not make one more proactive necessarily. Women are working to "fix" their problem too, but are less likely to announce their opinions.

    The different statistics are real, and exist because of very real differences in men's and women's bodies. Please everyone stop reverting to some stereotype that men are tougher and therefore grin and bear it better. It is a very real fact, not a matter of opinion, that more women than men get ME/CFS, just like more women than men who are infected with HIV go on to develop AIDS. Our bodies put us at a disadvantage in fighting this kind of illness.
  20. alex3619

    alex3619 Senior Member

    Logan, Queensland, Australia
    Hi Everyone,

    I think I recall Kerr's functional genetics breakdown had most women spread over something like seven groups, and most males in a group of their own. Something is different. The question is: what?

    The first and only ME/CFS patient I ever met in person who was in a wheelchair was a guy. I think it happens, but we are more likely to close ourselves off and not go out in public or to support meetings.

    Most guys I know are heavily into computers and seek out info - problem solving behaviour rather than emotional support. This is just a male cultural difference, and I don't think it is important.



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