Gender bias, MUS, Epistemic Injustice: the evidence

[A.B.]

ME/CFS is not a women's rights issue because men are also not receiving adequate treatment.

But how is it I generally get a far better response and taken more seriously if my husband accompanies me to all appointments, all DWP stuff, everything.

How do you know this is due to prejudice against women in particular? I'm a man and I also get taken more seriously with a family member accompanying me.

 

[Valentijn]

ME/CFS is not a women's rights issue because men are also not receiving adequate treatment.

Due to being re-classified as women.

 

[A.B.]

Due to being re-classified as women.

I can think of a few reasons that are more plausible, such as: no adequate treatment existing, or subjective reports of illness being more credible in the presence of a witness, or the psychological effect of being in the majority.

 

[SilverbladeTE]

not about "women", it's about enjoying the power to abuse people: bullying
they pick weak targets they feel can't fight back. Thus minorities, disabled etc and, yes women.

IMHO if women several millennia ago had decided en masse to castrate abusive spouses and the like, the world might be in a better place now, but that's just me

 

[JaimeS]

I don't think this is solely gender based (compensation payments are probably relevant).

yes; more funding from military. I would say this aspect is not so much gender-biased as part and parcel of the 'support our troops' American thing.

 

[JaimeS]

I agree that gender is a big issue here, but it intersects with other issues too

for sure, and no one is asking to ignore other aspects.

But would taking your wife or partner make any Difference?

I'm actually very interested to hear the answer to this. I'd say 'yes' probably, though I'm not sure the effect would be equivalent. Some of this may be the presence of a supposedly more reliable narrator of the experience.

ME/CFS is not a women's rights issue because men are also not receiving adequate treatment.

If we can't agree that gender bias affects both genders, as has been stated now four times, I think the conversation must be at an end! That's a very basic premise for the argument.

 

[A.B.]

ME/CFS is in a bad situation because it's a complex problem for which insufficient resources have been allocated. Whether that is ultimately due to bias against women is a matter of beliefs. The risk is that this belief may be wrong and that investing significant effort in changing prejudice may achieve nothing at all (it can actually backfire, reinforcing the belief that ME/CFS is a social construct that must be maintained because it does not exist at biological level).

Personally I think the reasons for the neglect are mostly due to the biological basis not being understood, the chronicity, and the lack of tests and treatments. In other words, they don't like us because we're a problem they don't understand and can't solve. Illnesses that were once considered psychosomatic became more respected once they were better understood, tests and treatments became available. Not because there were successful anti-gender bias campaigns.

 

[skipskip30]

I agree completely A.B. i won't be posting again as this topic is something I avoid but wanted you to know you have support for your opinion.

 

[Wolfiness]

Personally I think the reasons for the neglect are mostly due to the biological basis not being understood, the chronicity, and the lack of tests and treatments. In other words, they don't like us because we're a problem they don't understand and can't solve. Illnesses that were once considered psychosomatic became more respected once they were better understood, tests and treatments became available. Not because there were successful anti-gender bias campaigns.

Can you name some such conditions equally affecting men to see if they falsify the thread's hypothesis?

Again, one of the reasons that we don't have a biomarker is that for decades nobody thought it was worth looking for, because hysteria blah blah blah.

 

[Wolfiness]

@JaimeS "and the creeping suspicion that the more people understand this disease mostly affects women, the less serious they will believe it is."

(it can actually backfire, reinforcing the belief that ME/CFS is a social construct that must be maintained because it does not exist at biological level).

Absolutely. We should definitely not be banging on about patriarchy. We should just be showing as many young men having this disease as we can.

 

[A.B.]

Can you name some such conditions equally affecting men to see if they falsify the thread's hypothesis?

Peptic ulcer.

Edit: affects more men than women, was widely believed to be psychosomatic until the mid 80's when by sheer luck, a doctor figured out it was due to an infection. It took about 10 years for this to be accepted.

 

[Wolfiness]

No, I'm saying you should stop the shooting.
In that MUS treatment as it is currently envisioned is not in fact a useful concept at all.

We're saying nobody would have considered shooting them if they weren't mostly women or men considered effeminate. Cf honour violence.


Tapping out now.

 

[JaimeS]

Yes, tapping out as well. How exhausting.

 

[Wolfiness]

Peptic ulcer.

Edit: affects more men than women, was widely believed to be psychosomatic until the mid 80's when by sheer luck, a doctor figured out it was due to an infection. It took about 10 years for this to be accepted.

Fair point. But peptic ulcers were a much more b&w issue and never politicised the way ME has been, I don't think?

 

[JamBob]

Can you name some such conditions equally affecting men to see if they falsify the thread's hypothesis?

Again, one of the reasons that we don't have a biomarker is that for decades nobody thought it was worth looking for, because hysteria blah blah blah.

On the other thread I mentioned Gulf War Syndrome which is one of Sir Wes's pet MUS projects and the reason he was awarded a knighthood.

 

[Hutan]

Personally I think the reasons for the neglect are mostly due to the biological basis not being understood, the chronicity, and the lack of tests and treatments. In other words, they don't like us because we're a problem they don't understand and can't solve.

I wish I had seen this thread before I posted back on the 'Meruk exits' thread just now. Thanks @Jenny TipsforME.

Here's what I posted:

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.

 

[A.B.]

Have you considered alternative explanations for Tourette syndrome being treated better than ME/CFS or MUS?

There is a strong genetic basis to it, which makes it hard to argue that it's a psychosocial problem. It also seems to cause far less disability, which would explain the low levels of funding. This could also mean that there is less incentive for the health insurance industry to promote psychosocial theories that excuse them from paying disability pensions. The tics associated with Tourette syndrome are also visible to external observers which would reduce skepticism about the reality of the condition.

 

[Ysabelle-S]

Yes, tapping out as well. How exhausting.

Hope you're able to come back when you have more energy. It is worth discussing.

 

[Orla]

In the UK the fact that is affects more women than men is used as "evidence" that ME was/is a type of hysteria.

From McEvedy and Beard in the 1970's (this was the paper that set ME to be viewed as hysteria in the UK)

“…there is little evidence of organic disease affecting the central nervous system…” they write in their summary: “and epidemic hysteria is a much more likely explanation…The data which support this hypothesis are the high attack rate in females compared with males”

quoted here http://www.meassociation.org.uk/201...oxic-legacy-of-mcevedy-and-beard-10-may-2017/

 

[Hutan]

Have you considered alternative explanations for Tourette syndrome being treated better than ME/CFS or MUS?

Sure. I wrote this in the post in it's own thread.

Is it that the male:female ratio makes the difference? Is it that most people with Tourettes can work productively and are highly visible whereas many of us with fatiguing illnesses just loll about in an irritating but quiet way? Is there something to learn from Tourettes advocacy? Would a string of expletives directed at someone help?

There is a strong genetic basis to it,

Actually the evidence for a genetic basis is weak - the genetic influence is recognised as complicated (and probably interacting with environment) and not yet understood. From the NIH:

...more recent studies suggest that the pattern of inheritance is much more complex. Although there may be a few genes with substantial effects, it is also possible that many genes with smaller effects and environmental factors may play a role in the development of TS.
...
Currently, NIH-funded investigators are conducting a variety of large-scale genetic studies. Rapid advances in the technology of gene discovery will allow for genome-wide screening approaches in TS, and finding a gene or genes for TS would be a major step toward understanding genetic risk factors. In addition, understanding the genetics of TS genes may strengthen clinical diagnosis, improve genetic counseling, lead to the clarification of pathophysiology, and provide clues for more effective therapies.

The evidence for Tourette's having a genetic basis doesn't seem to be significantly stronger than for ME. The fact that many people think it does have a genetic basis perhaps suggest an increased willingness to accept biological causation for this illness compared to ME?

It also seems to cause far less disability, which would explain the low levels of funding.

Yes, probably it does cause less disability on average. And yes, that is probably a factor in the low levels of funding. That is therefore an argument for predominantly female diseases being treated worse than predominantly male diseases when it comes to research, when severity is taken into account.

This could also mean that there is less incentive for the health insurance industry to promote psychosocial theories that excuse them from paying disability pensions.

Indeed. And governments.

The tics associated with Tourette syndrome are also visible to external observers which would reduce skepticism about the reality of the condition.

Yes, agreed. Although, I have read several accounts of women turning up at ER with muscle spasms, convulsions and/or temporary paralysis and being given labels which are versions of hysteria. Non-epilepsy convulsions are very visible and are labelled MUS.

Obviously there are many factors influencing how a person is dealt with by the health system. But I think it's reasonable to believe that being a woman does reduce the chance that you will be taken seriously. And that has significant impacts on diseases that predominantly affect women and don't have clear biomarkers.