Gender bias, MUS, Epistemic Injustice: the evidence

[Jenny TipsforME]

In the last few days the issue of gender has been raised a lot, especially to do with the Medically Unexplained Symptoms agenda. It has surprised me how different our views and understanding of gender bias in healthcare is.

This thread is somewhere to add evidence about this, especially any research evidence.

So the questions are:
Is this marginalisation of patient voice in MUS conditions related to being majority female?
Also
Are MUS conditions mostly picked due to Epistemic Injustice and being majority female?
What is the evidence?
I'm hoping other people will add to this too. Eg @JaimeS @Molly98

A few other threads are of interest, though not the same as this one:
http://forums.phoenixrising.me/index.php?threads/is-medicine’s-gender-bias-killing-young-women.37455/

http://forums.phoenixrising.me/inde...-factual-information.51601/page-4#post-853580

http://forums.phoenixrising.me/inde...evidence-from-chronic-fatigue-syndrome.48193/

 

[Jenny TipsforME]

I'm at the end of my spoons for the day but I'll park a couple of examples of information here.

 

[Jenny TipsforME]

Understanding the concept of Epistemic Injustice is probably necessary for this thread. In relation to ME it is discussed here http://blogs.bmj.com/medical-ethics...in-the-treatment-of-chronic-fatigue-syndrome/

Our paper focuses on the marginalisation of the patient’s voice in the healthcare context by applying Miranda Fricker’s concept of ‘epistemic injustice’ to CFS/ME. For Fricker, there is an ethical imperative to share in the production and formation of knowledge. The healthcare encounter is an epistemological forum where the patient and doctor must combine their knowledge in order to arrive at well-formed medical decisions. In this epistemic scenario, the testimony and expertise of both the doctor and the patient are crucial to the outcome. Now clearly patients are not experts on every aspect of their illness – if they were, there would be no medical consultation. However, patients are experts about their first person experiences of living with medical symptoms – and not unusually, patients suffering from chronic conditions like ME/CFS are well-read and well-versed about their illness, including the kinds of treatments that work for them. This expertise should be of interest to doctors. Studies also show that doctors may view ME/CFS patients as hostile or combative when they challenge the incumbent biopsychosocial model of ME or CFS. Yet rather than feeling threatened or worse still, viewing the patient as uncooperative, there is an opportunity to discuss the limitations of medical knowledge. Here, we believe there is an ethical duty for candour and honesty: indeed, where there are clear gaps in medical knowledge the patient voice should have even more standing.

In our paper, we find widespread evidence (in the literature) that ME/CFS patient testimony is devalued. Forms of exclusionary deflation may be unintentional but include ignoring patients’ views, undermining their testimony, and offering alternative explanations for their suffering (e.g. pain not being biological but somatised). We also find that exclusion is expressed as negative stereotyping (“heartsinky patients”), and by pernicious ways of psychologising patients’ worries and complaints (even labelling patients as “illness seeking”). Indeed, it is because of the incomplete knowledge of CFS/ME that patients may be especially vulnerable to insidious and harmful forms of ‘expert’ gap-filling.

Our article hopes to highlight an ethical blind-spot in medical discourse to date: patients with CFS/ME suffer from a double whammy: not only is their medical condition unexplained, their very credibility as patients has been systematically deflated and discredited – even in the consulting room. The medical profession must be prepared to diagnose its own shortcomings, to better treat its patients.

@Keith Geraghty And co
See also their journal article http://forums.phoenixrising.me/inde...evidence-from-chronic-fatigue-syndrome.48193/

Testimonial injustice

Fricker proposes that testimonial injustice occurs when a speaker is unfairly accorded a lower level of credibility as a result of prejudice—centrally, prejudice concerning their membership of a negatively stereotyped group. In such circumstances, a listener (implicitly and/or explicitly) interprets the speaker to have a diminished capacity qua testifier and bearer of knowledge (eg, they may view the speaker as untrustworthy or unreliable due to prejudice). The result is that the speaker’s contribution to the shared epistemic enterprise is unjustly excluded, dismissed or relegated to a lower status as a result of negative stereotyping associated with some of the speaker’s characteristics (eg, race, accent, age, gender, disability).

 

[Jenny TipsforME]

So the questions are:
Is this marginalisation of patient voice in MUS conditions related to being majority female?
Also
Are MUS conditions mostly picked due to Epistemic Injustice and being majority female?

My instinct would be yes to both, but can this be evidenced?

 

[Jenny TipsforME]

Health care providers' judgments in chronic pain: the influence of gender and trustworthiness
Schäfer, Gráinne; Prkachin, Kenneth M.; Kaseweter, Kimberley A.; Williams, Amanda C. de C

Pain: August 2016 - Volume 157 - Issue 8 - p 1618–1625
doi: 10.1097/j.pain.0000000000000536
Research Paper

• Abstract
• In Brief
• Author Information

Abstract: Estimates of patients' pain, and judgments of their pain expression, are affected by characteristics of the observer and of the patient. In this study, we investigated the impact of high or low trustworthiness, a rapid and automatic decision made about another, and of gender and depression history on judgments made by pain clinicians and by medical students. Judges viewed a video of a patient in pain presented with a brief history and rated his or her pain, and the likelihood that it was being exaggerated, minimized, or hidden. Judges also recommended various medical and treatment options. Contrary to expectations, trustworthiness had no main effect on pain estimates or judgments, but interacted with gender producing pervasive bias. Women, particularly those rated of low trustworthiness, were estimated to have less pain and to be more likely to exaggerate it. Unexpectedly, judgments of exaggeration and pain estimates were independent. Consistent with those judgments, men were more likely to be recommended analgesics, and women to be recommended psychological treatment. Effects of depression history were inconsistent and hard to interpret. Contrary to expectations, clinicians' pain estimates were higher than medical students', and indicated less scepticism. Empathy was unrelated to these judgments. Trustworthiness merits further exploration in healthcare providers' judgments of pain authenticity and how it interacts with other characteristics of patients. Furthermore, systematic disadvantage to women showing pain is of serious concern in healthcare settings.

http://journals.lww.com/pain/Abstra...roviders__judgments_in_chronic_pain__.10.aspx

If you could help find studies on this topic that would be great!

 

[Jenny TipsforME]

Also this is a complex issue, it is probably worth copying in some previous posts to avoid covering the same ground.

 

[Jenny TipsforME]

These may get edited down tomorrow. To get the idea of what has been discussed:

Thanks. This is the type of thing that infuriates me:

'
Unexplained symptoms tend to be more common among:

• women
• younger people
• people who've recently had an infection or physical illness, or those affected by the ill health or death of a relative
• people who've previously experienced problems such as depression and anxiety

The reason women appear to be affected more than men may simply be that women are more likely to see their GP. And older people may appear to be less affected because many older people don't like to bother their GP.'

Honestly! And these people are health professionals! Women Are likely to be affected more due to their sex hormones. Women are known to be more affected by autoimmune diseases.
.

I see it the other way around. Women are more affected because these are the conditions they don't take seriously, and women are more likely not to be taken seriously. How do they divvy up the conditions into taken seriously and not taken seriously? Well women and younger people are seen as less reliable witnesses about their own bodies, so conditions which biologically occur more often in these groups are MUS (even if they are fairly well medically explained )

It's the patriarchy man!

BTW I regretted that throw away comment it resulted in lots of debate about the definition of patriarchy!

I was a bit tongue in cheek in the way I said "it's the patriarchy man!" In my head @sb4 but I do seriously think gender bias is involved (even for men who have the misfortune to get mainly female conditions, you are tarnished by the association with unreliable females!). Also I'm not suggesting women in power would solve it. Women can absorb sexist bias the same as men.

It clearly isn't down to having a biomarker because EDS is included and that has known genetic mutations. POTS has objective tests and medication which works fairly well (because they have a fairly good understanding of what's going on). POTS is 4:1 female:male.

What these conditions have in common is NOT that they are medically unexplained!

"The patriarchy" doesn't mean man, bad, woman, good. It means, in part, that traits and characteristics perceived as feminine are de facto less valuable and meaningful; and that diseases that occur more often in women are mysterious, meant to be endured, not cured, and symptoms are an over-reaction on the part of the patient. Patriarchy says that characteristics of femininity are distasteful -- for sure in women, but all the moreso in men. Women steeped in their culture fall for this just as much as men.

I've read a damning study that said that female doctors are equally likely to trivialize 'women's diseases' as male doctors.

There are lots of illnesses without a single biomarker; they are not all treated in this manner.

Sorry its hard to tell on the internet sometimes.

I don't think this is a big a factor as the other things I mentioned.

I'm not sure I understand this. POTS has objective tests and so is treated more sensibly than ME/CFS. ME does not have this so is treated idiotically, however both disproportanitly affect women. Which is the point I was trying to make...?

Hmmm, I always thought patriachy meant men in power.... it appears we are using different definitions for the same word.

I'm unaware of these other diseases but I think a lot went wrong with ME to get us where we are. First it was probably dissmissed as women being emotional but now I think bad science, financial insentives, and lack of test/biomarker are the main factors in this.

I think if we missdiagnose the problem, then we wont be able to fix it. If all effort is put into patriachy argument then maybe people will not think biomarker is such a big deal and maybe not invest in the research.

Here is the definition from Wikipedia:

Anti-feminist ranters on the interwebs (NOT you!) like to redefine feminist-associated terminology to stupider things in order to strawman it. "The patriarchy" refers not just to the way that feminine traits aren't valuable in women, but that men are tormented for showing the slightest hint of traditional femininity. Women, on the other hand, are praised for displaying masculine traits like "toughness". Why? Because the masculine is the ideal to which we all should strive, and the feminine is weak and useless. Just by having a chronic illness, you are flouting traditional masculinity! How dare you!

In the doctor's office, on a one-on-one basis, being dismissed as "just" being too emotional has resonance and immediate meaning for nearly everyone who writes, here. Obviously it is a significant concern for us.

The thing is, ME/CFS does have lots of research on it; that research continues to be ignored. Just look at the headlines every time we discover something new:

ME/CFS Not In Your Head After All!

There is a perception problem that persists, even in the face of good science.

Finally there is no problem discussing this as an issue of gender and fighting for biomedical research.

I think that campaign on the MUS thing as a women's issue may be the only way to counter this. It is huge now and the pace of it just seems to be gathering. I know it also affects a lot of men in the same way, of course it does, I am not suggesting for a minute that it doesn't, but this campaign needs to be wider than ME, wider than invisible illness, it needs to get a big section of the mainstream population fired up and up in arms.

If the focus were to be on the gender issue with MUS, for every woman affected, there are husbands, fathers, sons who are supporters and may also join the fight. To have any real effect it has to impact as a wider section of the population as possible.

Maybe, but they can congratulate themselves as superior women -- ones who do not succumb to the frailties of their gender. A lot of this seems to me to be driven by self-esteem issues -- as in using the strategy of tearing others down builds oneself up.

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

As @Jenny TipsforME implied, women are more affected by conditions not taken seriously because women's conditions are a priori not taken seriously. It's circular. I hate to say it, but in publicity terms one young straight male pwME is worth at least 5 women. Double that if he has a beard.

The DWP's Disability = Weakness = BAD mentality is also, as @JaimeS indicates, at least tangentially patriarchal. Patriarchy is the pervasive consequences of men in power.

But do you believe them more? Sympathy and protectiveness towards weaker, less reliable or rational creatures is part of patriarchy. It's called paternalism! I feel sorrier for kittens and babies then I do for beardy men but I'm much more likely to overrule their feelings towards their medical treatment. When I see a beardy guy with ME I instinctively consider him less neurotic or delusional.

I don't know, because patriarchy is the pervasive consequences of men in power, and the world and science has already been shaped by millennia of patriarchy. If racism was eliminated tomorrow there would still be millions of poor African Americans being treated like crap for socioeconomic reasons the root cause of which was racism.

I do think that if sexism/patriarchy had been eliminated in 1950 we would probably have a biomarker by now. Nobody is saying that finding a biomarker isn't Job #1!

Sexism is at the centre of MUS targeting illnesses predominantly affecting women. Men with those illnesses suffer the same neglect as the women, and may also have to deal with sexist ideas from medical professionals about how men are supposed to be/act, etc. I've heard heart-wrenching accounts by men with ME saying they were made to feel they were not proper men or that their masculinity took a hit because of the illness and the way others wrongly perceived them. I hope this has not happened to any of the male ME sufferers here.

Other men have historically been targeted in this way - gay men being the best example, but also men who have interests usually seen as 'feminine'. Misogyny is something men or women indulge in, towards women and girls mostly, but also towards men and boys.

In the case of MUS, this is politically and financially driven misogyny, and it's backed up by ableism and class prejudice. I really do think class prejudice has a part of play in this (at least in the way this MUS mentality is so strong in England). Most medical and psych professionals are probably middle class. Of course many of the sufferers may also come from a middle class background, but once you're unable to work, your financial status will take a hit, and you may well end up poor. Attitudes to the poor are similar to racism - the poor are lazy and weak, and lack self-discipline (not true, but it's the perception), and funnily enough, that's how the ill are seen too.

.

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.

I personally think that any mention of gender bias would be a major own goal for this. The task is to show that MUS is based on opinion rather than evidence. The idea that these illnesses are dismissed because they chiefly affect women is, I think, the same sort of opinion without evidence. I can think of all sorts of reasons why ME and IBS are dismissed and it had never really crossed my mind that it had anything to do with gender.

@Jonathan Edwards (couldn't copy post properly)

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.

Is it credible?! If we think so we need to find the evidence...

 

[JaimeS]

That's a lot of hard work @Jenny TipsforME -- thank you!

 

[Jenny TipsforME]

I'll just add in your latest response

Here's a good example: the same physician who derided me for having ME/CFS and made noises like it was a problem with my ladylike emotions told my stepfather, "you can't be sick! A big, strong man like you..." and slapped him on the back. (He had cancer.) Gender bias is a double-edged sword that cuts both ways: nobody wins.

Anyone is free to disagree with this as an idea, of course, but please stop saying that characterizing some of the issue as sexist means that men are treated well. That is absolutely not what it means. My stepfather was not treated well because my physician was sexist -- it harmed him also.

Grounding this in history one more time: the first outbreak of ME/CFS was characterized as 'hysteria', a distinctly feminine-associated condition. That is the foundation for which many physicians and doctors still view the disease. If we'd prefer to ignore the connotations, I understand -- feminism and women's issues seems to be one of those topics where people make assumptions and leap to conclusions because it's such an emotionally-saturated idea. It might be a third rail that derails other conversations. Perhaps that's why people stay away from it as part of the problem.

But not acknowledging it IS a problem. That worries me.

 

[JaimeS]

I'm going to edit this probs -- referencing McEvedy and Beard or whomever. https://www.ncbi.nlm.nih.gov/pubmed/5411611

 

[Molly98]

@Jenny TipsforME Thank you for tagging me in. Such an interesting thread and important topic. And one I am very interested in, I do wish my typing, reading would keep up with my thoughts as I would love to contribute but also seriously flagging and out of spoons.
I hope I am able to engage more over coming days.

 

[RogerBlack]

So the questions are:
Are MUS conditions mostly picked due to Epistemic Injustice and being majority female?

My instinct would be yes to both, but can this be evidenced?

I note the condition brought up in the other thread - "gulf war syndrome".
It would be interesting if any work has been done on GWS, and treatment of female sufferers of it.

 

[Jenny TipsforME]

@RogerBlack yes we should look that up. Also any emasculating terminology for the men affected.

Something that comes to mind is Nancy Klimas saying she uses Gulf War research funding as a back route to getting info for ME, because they're similar but it is a lot easier to get funding to study Gulf War Syndrome. I don't think this is solely gender based (compensation payments are probably relevant).

Right I'm off for the evening.

 

[RogerBlack]

I wonder however if it matters at all.
If doctors were shooting MUS patients to end their suffering, the proper tactic is not to ensure they are shooting a properly gender selected group of people.

 

[Ysabelle-S]

I agree that gender is a big issue here, but it intersects with other issues too, not to mention cynical self-serving careerism, and the growing problem of the opposition trying to make sure their BPS establishment 'treatments' are in place before the shit hits the fan, thereby keeping them in a job longer. Someone mentioned GWS on another thread as an example of males being targeted. I actually think veterans are enormously vulnerable as a patient group when governments don't want to be forced to take responsibility for their own mistakes. These are the same governments who are capable of sacrificing military lives for bad causes (which incidentally is a perfect example of patriarchy - WWI is one of the worst examples, with so many male lives for old men's arguments). Just look at the treatment of veterans - some left homeless, without jobs, rejected by social security - after risking their lives for their countries. I think there are groups in society whose interests are somewhat more disposable, especially if those interests clash with the elite.

As for patriarchy, it is a pyramid system of power. Technically a woman can sit at the top - Elizabeth I for example. But it doesn't change the system. It's an anomaly that passes. The pyramid has a tiny amount of people at the top, and a lot of people at the bottom. Society is a pyramid made up of pyramids (families) - traditionally the head of the family was male, and women and children were further down. I'm pretty certain there was at least one country where killing your husband was seen as an act of petty treason, because you were killing the symbolic king (the head of the family). Whereas men who killed their wives were not convicted of petty treason.

Patriarchy has a system of class stratification, sucking power and money upwards. But it allows people at the bottom to exercise control over others there. Class, race, gender, sexuality, etc, etc, all exist within this structure. Gender isn't the half of it. And this division and stratification along gender, race and other lines stops people from being united against the minority at the top, since they're too busy trying to get a better rung on the ladder themselves, even if they're already near the bottom. Upper class white women colluded with slavery, and they have historically treated lower class people of any gender poorly or even with snobbery or cruelty. Gender is more obviously connected to patriarchy, but there have been massive injustices committed against men - press ganging, rounding men up to fight in wars they had no interest in, and WWI to me is one of the most terrible examples. An utter waste of human life. And the way that men were shamed with the likes of white feathers if they didn't want to fight - utterly disgusting. It was predominantly male lives that were lost there, and you can bet it wasn't the people at the top of the military. It was the more expendable men, more expendable because of social class for one.

So yes, I think it's complicated. But that's why the collusion of women professionals is not exactly leaving me surprised.

 

[Molly98]

Just one little comment for people to think about and perhaps add their experiences or analysis.

Once upon a time I would consider myself a strong, independent woman, owned my own home aged 21, traveled the world on my own, studied at post grad level, was a respected professional in my work. I get Diagnosed with ME all of a sudden, my experience, voice, views, intelligence are wiped out over night, nothing is believed or taken seriously, you all will know and share the experience I am sure.

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. He now comes to everything with me because we both know there is less chance of being outright dismissed, and far less chance of abusive or ridiculing behavior.

I hate and I mean hate that it has to be this way, but it is this way, if I am to get anywhere I now have to have him there. The difference in attitude can be quite startling. Professional looking white man in a suit, listened to and respected, sick female with ME dismissed and ridiculed and not taken seriously. But then perhaps neither are Male ME patients. But would taking your wife or partner make any Difference? and is it that you are being treat in this way because ME is perceived weak, in ability to push through, get on with things, be a Man, so as said before it is perceived as weak and feminine and that's why men with ME are also not being taken seriously.

 

[Jenny TipsforME]

@RogerBlack using that analogy we're saying that a group is chosen for shooting BECAUSE they are majority female. So in that case men in that majority female group should be loudly challenging this criteria for execution!

 

[RogerBlack]

@RogerBlack using that analogy we're saying that a group is chosen for shooting BECAUSE they are majority female. So in that case men in that majority female group should be loudly challenging this criteria for execution!

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.

 

[Jenny TipsforME]

@Ysabelle-S i do agree but this thread is focused on the gender aspect.

 

[Jenny TipsforME]

What about evidence? Either way.