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Not just a women's disease

Discussion in 'Advocacy Projects' started by snowathlete, Dec 17, 2014.

  1. snowathlete

    snowathlete

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    I am sick of governments and other parties portraying the disease as a 'women's disease' as if women are somehow second class citizens. It disgusts me. It is an old tactic that has been used to downplay many diseases over the years. It is effective.

    I am a male with the disease. I know that I am not the only one. Although more women appear to get the disease than men, there are still huge numbers of men with the disease. The current situation insults both men and women. Women as if they are worth less then men, and men because it totally ignores sick men as if they don't exist at all.

    I'd like to see this change. I'm thinking of starting some kind of male campaign to highlight the reality that many men have the disease too and that govt etc should not be trying to downplay things by playing the gender card like they currently do. I think it could be good for getting publicity and to make it harder for the government to continue to use the 'women's disease' tactic. Thoughts?
     
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  2. GracieJ

    GracieJ Senior Member

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    Go, @snowathlete !

    Anything that puts the lie to this mess is good.

    Lately, I am getting more brave about talking about this condition. I have not been open about it ever with the abuse it has brought.

    But now I am strong enough. As I write about it to different groups, I see two things. One is continued indifference.

    The other is that intelligent people are waking up and having my back.

    If enough people write and talk about this, it will gain momentum.
     
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  3. Aurator

    Aurator Senior Member

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    I'm not really sure what inference we're meant to draw from someone referring to ME/CFS as a women's disease. If it's a merely statistical observation, then, fair enough, there's a germ of truth in it inasmuch as women sufferers outnumber men, though this still doesn't make it accurate to refer to it as a women's disease.

    But if more than a merely statistical observation is being made, then what is the implication exactly? What implication, that is, that could possibly be regarded as a publicly acceptable view?
     
  4. *GG*

    *GG* Senior Member

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    Count me in!

    Male with some energy here, on some days that is :)

    GG
     
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  5. snowathlete

    snowathlete

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    Of course there is a statistical observation that more women than men get the disease and there is nothing wrong with that (assuming it is accurate) and this may even provide some valuable clues as to how the disease functions; again, nothing wrong with that.
    But, medicine has a long history of downplaying diseases that affect women and I think it is a tactic used to halt progress. The implication is that it is female hysteria and weakness. Many of the papers from psychiatrists 'researching' CFS choose all female groups to study, and you have to wonder why.

    I haven't looked but I bet in general, those illnesses that disproportionately effect women get less funding (someone must be blogging about that somewhere is my guess), less attention, get placed under womens disease groups that have little power to progress things, etc. There is definately some stuff here that I can see but not quite see clearly, and going above my head at the moment that I can't articulate. I wonder if @alex3619 might have some views on this?
     
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  6. Gypsy

    Gypsy Senior Member

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    And you forgot to put "middle aged" in front of women....since the CDC still maintains that:
    • The illness occurs most often in people in their 40s and 50s, but people of all ages can get CFS"
    This bias against men and young adults (the later most often severely affected by sudden viral onset) still has not changed, since CFS is still viewed as a disease of unhappy women with "empty nest syndrome" by the powers that be.

    If me/cfs was a predominantly "men's disease", how much more funding and how further along would we be in the progress of treatment? We all know "women's diseases" are usually partially hysteria, right? (sarcasm)

    One day...one day.
     
    Last edited: Dec 17, 2014
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  7. worldbackwards

    worldbackwards A unique snowflake

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    I think if they could accuse us of having a wandering womb, that would be the first port of call!
     
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  8. Ren

    Ren .

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    Ideas...

    Request that the Office of Women's Health (and/or its equivalent(s)) change/adapt its mission statement* to include a commitment to the men/boys within the Office of Women's Health population? Copy said request to offices of diversity and inclusion? (Screensave/document the absence of such inclusion now.)

    Request that the (unmet) healthcare needs of men/boys within the Office of Women's Health population be evaluated/addressed?

    Request that the illnesses of men/boys within the Office of Women's Health population receive research funding comparable to that of illnesses (with a commensurate burden) of men/boys outside the Office of Women's Health population?

    File a discrimination lawsuit against the federal government??

    Bombard the Office of Women's Health with male health questions (especially on some particular/significant day?)?**

    *http://www.fda.gov/aboutfda/centersoffices/oc/officeofwomenshealth/default.htm
    *http://www.cdc.gov/women/about/
    *http://www.womenshealth.gov/about-us/mission-history-goals/index.html

    **https://twitter.com/womenshealth / https://twitter.com/hashtag/MECFS?src=hash
     
    Last edited: Dec 17, 2014
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  9. alex3619

    alex3619 Senior Member

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    Angela Kennedy touches upon this in her book "Authors of our own misfortune?" She is deeply into women's issues research, and would be a good person to contact.

    The history of these attitudes is a history of claiming women as the weaker sex, and goes back to ancient times. Freud in particular promoted some of this, and modern psychosocial thinking is tainted by it. Given that ME is often considered by biopsychosocial proponents as part of their domain, these issues are probably very relevant.

    I have limited time available, like most of us, but I endorse at least looking into this topic, then we can go from there.

    Let me point out that comments to the effect that women are weak and that is why they get ME are known, but similar comments are made about men who get ME ... we are not real men, apparently, because we often have low testosterone. This goes beyond misogyny.
     
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  10. Valentijn

    Valentijn WE ARE KINA

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    There's not a germ of truth in it any more than there would be in calling Type I Diabetes a "male disease". Do your genitals completely protect you from getting the disease? If not, the disease is not related to sex.

    Accordingly, ME/CFS does not belong in a category defined based on sex.
     
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  11. alex3619

    alex3619 Senior Member

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    I agree with this, but there is a caveat being looked at right now - males with ME present differently to females with ME. Fletcher is wanting a study on this and trying to recruit males, so she can spot biochemical differences etc. This is probably not about the disease though, just how it expresses differently.
     
  12. taniaaust1

    taniaaust1

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    That made me cringe as the study is probably going to be a small one (Im going to assume that seeing most of our studies are) and whatever the outcome is may not end up being right. It could cause us more issues if males were suddenly separated from the females due to a tiny incorrect study.
     
  13. eafw

    eafw Senior Member

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    Ah yes, the ever popular make men's lives better by sabotaging women and any resources that may be set up for women tactic. Even though it actually doesn't help anyone to go down that route. Please, don't.
     
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  14. eafw

    eafw Senior Member

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    It is certainly true that "women's stuff" is de-legitimised, though thinking of a condition like MS, where the relapse remission form has a 2:1 F:M ratio, and various autoimmune dieases with a greater F:M ratio (RA and so on) - these conditions are seen as real, men with the conditions are recognised and treated, and with drugs that are actually designed for male physiology to boot.

    The stumbling block is the perception of ME as an anxiety disorder. It is a way to belittle the condition, but I'm not sure whether saying men get it too and it's not just about hysterical females will take things forward at all. I do agree with most of what you're saying, but wonder what your proposed campaign would look like ?
     
    Last edited: Dec 18, 2014
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  15. Aurator

    Aurator Senior Member

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    Actually my sentence ran: "there's a germ of truth in it inasmuch as women sufferers outnumber men, though this still doesn't make it accurate to refer to it as a women's disease.
     
  16. justy

    justy Donate Advocate Demonstrate

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    I think this is a delicate issue. Trying to explode the myths about WHO gets M.E as a campaign in general would work, with the idea that only women get it being a large myth. other myths about M.E that need exploding in terms of who gets it is that children don't (I have heard, though rare of children as young as 4,), also that teenagers don't get it (my daughter was 15 when she suddenly became ill).

    We are told that high achievers get it, type A personalities get it. Depressed people, anxious people, lazy people, people who stay up too late, people who sleep too late, people who train too hard, people who don't train hard enough.

    All of these myths need busting with a campaign that highlights the multifaceted nature of the illness. Not only who gets it but what it looks like. It can look like a 23 year old man in a wheelchair, not just a slightly tired looking middle aged woman. It could look like an 8 year old boy AND his 12 year old brother, or a 26 year old female athlete.

    I'm thinking about the ads they ran in the UK on the television to promote awareness of mental health issues - they had ordinary and many different types of people, and famous people saying for example 'I have depression' or ' I suffer from mental health problems' they tried to remove the stigma by showing how anyone can have mental health problems and anyone does.

    Hmm, I will have some more thoughts, just a bit of rambling there...
     
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  17. snowathlete

    snowathlete

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    I don't think it is as simple as saying that the stumbling block is one thing, I think it is a multifaceted problem and interactions between those facets. The perception that it is an anxiety disorder, or other type of mental health problem, is certainly part of it, but a bunch of stuff drives that, as well as there being distinctly different problems also. I think the promoted view that it is a female disease falls under both categories.

    I don't know at this stage what the campaign would look like, and it would only be worth doing if having thought things through there was a tangible benefit in sight, but at this stage I am just floating an idea, seeing if anyone else has already thought about this or has a potential interest in it. My instinct is that those wanting to maintain the status-quo benefit from prevailing perceptions like this and it may not be an area that they are practiced at defending. I also think this might be something that the public would take an interest in as I doubt it is just an ME issue and I suspect public attitude has moved on in the last decade or two while in some areas of medicine it perhaps has not kept step.
     
  18. snowathlete

    snowathlete

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    Nice ideas. I agree that there are other myths about the disease that also need busting, and perhaps it would be a good idea, as you suggest to go after 'myths' more generally, as these ideas that people get do all cause damage. You mentioned another one that I have thought about too; the idea that children don't get it, or that they grow out of it as it is always temporary. I think there is a need to think strategically too, and many advocacy groups focus on children because there is more sympathy from the public for kids that are sick. I have always found it strange that it isn't more of a focus for many of the ME/CFS charities/advocates (though I accept there are a couple of groups doing some good work to help children with ME/CFS).
     
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  19. Ren

    Ren .

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    To request that our partners, husbands, brothers, fathers, grandfathers, sons, uncles, friends, etc. be acknowledged by a government agency that is paid to represent them does not "sabotage" resources.

    If some stakeholders do not want men/boys to be fully included in the agency where CFSAC is housed (Office of Women's Health), then this is all the more reason for CFSAC to be moved out of OWH and into a sphere where all stakeholders can be respectfully included.

    Limousines and busses both have back seats for "special" people. Is OWH a limousine or a bus?
     
    Last edited: Dec 18, 2014
  20. Tired of being sick

    Tired of being sick Senior Member

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    How could it be a "women's disease" if I and at least
    85,000 other men in just the US alone have it?
     
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