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ME Research UK withdraw from UK CFS/ME Research Collaborative

Messages
2,391
Location
UK
I think you give them far too much credibility. MUS is an invention, a way to tie up these illnesses for the benefit of the DWP and insurance. It has little to do with whether the illnesses collated under the MUS banner are psychological or biological, but whether they can retag them as psychological.
I take your point. Been focusing on what the words "medically unexplained symptoms" mean (foolish thing to do!), rather than the obfuscation that MUS imparts. :rolleyes:. The science of bullsh*t.
 
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JaimeS

Senior Member
Messages
3,408
Location
Silicon Valley, CA
I'm unsure how we got into a full-blown debate about the definition of the patriarchy. Here are the points to take home:

1) ME/CFS affects more women than men, significantly so.
2) Femininity and feminine traits are considered undesirable, and masculine traits desirable; that is, both men and women expressing traditionally feminine traits are derided, and men and women expressing traditionally masculine traits are praised.
3) An illness that primarily shows up in women will be derided.

If we say we shouldn't bring this up -- that it would cast aspersions on the very scientific nature of the disease, 'distract' from the necessity of finding biomarkers -- then I think we need to ask ourselves why on earth that ought to prevent anyone from searching for biomarkers. I've even heard scientists say that it's very important we not consider it a 'women's issue'.

Does a disease grow less legitimate if we keep tying it back to women?

I think yes. I think that's the problem.

And so I'm torn between raging because the fact that I am a woman and simultaneously am sick doesn't mean my sickness is a sign of feminine weakness, and the creeping suspicion that the more people understand this disease mostly affects women, the less serious they will believe it is.

And that leads to keeping my mouth shut about gender prevalence and what that might have to do with the measly funding, the constant psychologization, and the frequent references to 'woo' like meditation, diet, and yoga as healing modalities.
 
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Messages
1,478
The trouble is most people making comment about this disease without actually having first hand experience of it talk crap. Working out whether it's patriarchal crap or just the regular crap is a bit tricky......it's still crap.

I am a man with a beard btw (I only grew it though so I don't have to waste energy shaving every day)
 

JaimeS

Senior Member
Messages
3,408
Location
Silicon Valley, CA
Working out whether it's patriarchal crap or just the regular crap is a bit tricky......it's still crap.

Crap is crap, and I'm not sure how we should approach it given that part of it IS patriarchal crap. As I said, part of why I think we're urged not to mention the gender divide is because it brings the wrong kind of attention. But that in and of itself is infuriating.

Certainly ME/CFS was initially framed as mass hysteria, which has potent feminine overtones. It would be very challenging to argue that it doesn't play a part in the way that the illness has been framed, and therefore in how we're treated today. If some of us here are rising to that challenge, I'm not sure why. What is to be gained from stating that gender plays no role in how ME/CFS is marginalized? Especially when -- as far as is possible in sociological contexts -- there is lots of evidence that it's the case?

Ectopic pregnancy for instance? :confused: (OK, not a disease, but you see my point).

Pregnancy is the exception that proves the rule. Anything to do with pregnancy is treated with deadly seriousness in the medical community.
 
Messages
1,478
Crap is crap, and I'm not sure how we should approach it given that part of it IS patriarchal crap. As I said, part of why I think we're urged not to mention the gender divide is because it brings the wrong kind of attention. But that in and of itself is infuriating.

Certainly ME/CFS was initially framed as mass hysteria, which has potent feminine overtones. It would be very challenging to argue that it doesn't play a part in the way that the illness has been framed, and therefore in how we're treated today. If some of us here are rising to that challenge, I'm not sure why. What is to be gained from stating that gender plays no role in how ME/CFS is marginalized? Especially when -- as far as is possible in sociological contexts -- there is lots of evidence that it's the case?



Pregnancy is the exception that proves the rule. Anything to do with pregnancy is treated with deadly seriousness in the medical community.

I agree, I think it is tricky...we shouldn't allow them to brush stuff under the carpet particularly the hysterical women part, (which is sickening) but we don't want the agenda to be potentially fragmented?. It's not like we have a lot of media air time to play with.

As a man I am discriminated against ( equally by women and men) which could make me feel imasculated I guess but I think the bit that aggravates me the most is the way society treats me as a human being. This is mainly because of the perception that I am somehow "weak" and therefore diminished/lower caste in some people's eyes.

I think "dehumanising" is a good header/umbrella because you can refer to the gender and other discrimination points under it without necessarily making it all about gender. This feels no different to the discrimination I have felt to the other main disease I have had since childhood which definitely doesn't have a gender bias. It's all too familiar I'm afraid.

Stigma drives limited care and support and research funding for a whole range of invisible illnesses that have no gender bias.
 

sb4

Senior Member
Messages
1,654
Location
United Kingdom
I'm unsure how we got into a full-blown debate about the definition of the patriarchy. Here are the points to take home:

1) ME/CFS affects more women than men, significantly so.
2) Femininity and feminine traits are considered undesirable, and masculine traits desirable; that is, both men and women expressing traditionally feminine traits are derided, and men and women expressing traditionally masculine traits are praised.
3) An illness that primarily shows up in women will be derided.

If we say we shouldn't bring this up -- that it would cast aspersions on the very scientific nature of the disease, 'distract' from the necessity of finding biomarkers -- then I think we need to ask ourselves why on earth that ought to prevent anyone from searching for biomarkers. I've even heard scientists say that it's very important we not consider it a 'women's issue'.

Does a disease grow less legitimate if we keep tying it back to women?

I think yes. I think that's the problem.

And so I'm torn between raging because the fact that I am a woman and simultaneously am sick doesn't mean my sickness is a sign of feminine weakness, and the creeping suspicion that the more people understand this disease mostly affects women, the less serious they will believe it is.

And that leads to keeping my mouth shut about gender prevalence and what that might have to do with the measly funding, the constant psychologization, and the frequent references to 'woo' like meditation, diet, and yoga as healing modalities.

Today someone suggested that people might develop ME because most sufferers are women, and women go on lots of diets. :(

Yes we went down a rabbit hole there.

I just think that because no biomarker/test that psycholoists get to push their crap, they have a financial insentive to do this (DWP) and an ego to be proven right which leads to fudging results.

Psychologist undoubtedly try to place some of the blame on women being emotional/etc, however even if this was a disease affecting both genders equally they would still peddle the rest of thier psych shit.

Psychology is an industry dominated by females. So when I see someone saying the patriachy is the problem, I don't think it's accurate. I have since realised you meant by patriachy that gender differences that negatively effect women are part of the problem, which I agree with.

I just think that the patriachy / sexism argument can be a little inaccurate sometimes as most people seem to agree with each other on this issue.

:)
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
Certainly ME/CFS was initially framed as mass hysteria, which has potent feminine overtones.
As I currently see it the roots of ME research were not influenced by gender issues, at least from anything I have read. However from 1970 when McEvedy and Beard started reframing the debate from an Hysteria perspective, that all changed. These notions that derive from Fraud Freud are deeply paternalistic, and frequently misogynistic. Of course the history of psychogenic claims has strong political overtones, which again are often paternalistic and sometimes tend toward misogynistic attitudes.

Politics is about winning arguments, and persuading people to go along with your agenda, and scapegoating and appealing to bias are methods used in politics. These days we more visibly see scapegoating against different religions, and of course anyone on disability. Disability hate crimes in the UK were rising a few years ago, probably due to public discourse and in particular political campaigning.

I wish it were not so but I suspect that any woman of a different race and religion who is disabled has a very difficult time in much of the world. They would tick all the bigotry boxes for anyone wanting to blame someone. Being disabled with a disease they can label as MUS or MUPS will be yet another box to tick.

I do not recall if it was Martin Luther King Jr who said something like so long as one person is discriminated against we can all be discriminated against, but the idea is one I agree with. The universe is not just or fair, but that does not mean we cannot strive for justice and fairness ourselves. Exactly which bigotry is at play is less important than that bigotry is at play at all.
 

RogerBlack

Senior Member
Messages
902
I think if the ratio was 4:1 male we would have a biomarker by now. There's the patriarchy.

Really?
As a male PWME, I utterly do not believe this.
My doctors have all been quite dismissive, and I question if tripling the number of men with ME (versus the existing 3:1 ratio) would have had any effect whatsoever on perception or treatment of this condition.
There is a major difference between maltreatment of those with symptoms that are perceived as correlating with femininity, and treating presenting with identical symptoms differently because of the conditions gender bias.

The first is a general problem that is far, far, far wider than CFS.

For the second to be a problem presumes the first can be magically fixed for particular illnesses because they have a predominantly male patient base.

The number of PWME is _tiny_ compared with the overall number of patients with dismissed symptoms, claiming that a disease with a tiny incidence is going to change overall behaviour because of its gender occurrance rate is not credible.
 
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Messages
1,478
Actually I prefer a sticky bun

image.jpeg
 

Hutan

Senior Member
Messages
1,099
Location
New Zealand
My doctors have all been quite dismissive, and I question if tripling the number of men with ME (versus the existing 3:1 ratio) would have had any effect whatsoever on perception or treatment of this condition.

I started a thread about Tourettes as this is a potentially neuroimmune syndrome where more men than women are affected. http://forums.phoenixrising.me/index.php?threads/why-isnt-tourettes-a-mus.51621/#post-852725

Despite there being no biomarker, people with Tourettes don't seem to be put in the MUS bucket. There seems to be a widespread acceptance of a biological cause despite research supporting that belief looking just as preliminary as that supporting a biological cause for ME.

(Although it looks as if people with Tourettes do accumulate labels such as ADHD and mood disorders rather more commonly than people without Tourettes - so perhaps the psychs get them in the end).

I checked out research spending on Tourettes in NIH. I'm not 100% sure I found it all, but total project spending looked to be around $4 million in 2014, with a prevalence that looks reasonably similar to ME/CFS (1 to 10 in a 1000 people). So the fact that this is a predominantly male disease perhaps has not translated to more research dollars than for ME.

I think that gender ratios do affect how a disease is perceived (i.e. whether if you just thought differently you could be well). And having your illness recognised as valid rather than written off as hysteria, that alone makes a big difference to quality of life.

BTW, I have no objection to a confidently worn man-bun. :p
 
Messages
2,391
Location
UK
It shows he is very comfortable with his heterosexuality. :D
Sorry, reminds me of a droll bit of humour in a Woody Allen film. He's in a cafe I seem to recall, and gets his scrawny little self into a verbal set to with an enormous hairy-'arrised trucker or suchlike, who thinks he is being accused of being homosexual. So Woody says to him along the lines of "No, I didn't mean that at all. I was actually saying that I think you are a magnificent example of heterosexuality ..." to which the hairy one replies "I know perfectly well what you are calling me!" ... and thumps poor Woody. It was incisively funny.