Gender bias, MUS, Epistemic Injustice: the evidence

[Orla]

This is interesting on the McEvedy and Beard paper. A critique from Ellen Goudsmit (from the essay The Psychologisation of Illness http://www.axfordsabode.org.uk/me/melist.htm):

"As for the predominance of females, this was true only in relation to the non-resident staff. The attack rates for resident men and women were 19 and 20 per 100 respectively (11)."

Her essay is worth reading in full as it contains arguments against the McEvedy and Beard Hypothesis (a bit like PACE it really should never have been published, or it should have been discredited almost immediately). This is another quote from it (she is talking here about illness in general here):

"Although the literature shows that men are not immune, most of the reports relating to psychologisation feature women. In older texts, female patients were often portrayed as suggestible, emotionally unbalanced, irrational, manipulative and unable to cope with relatively minor 'stress'. For instance, authors writing about dysmenorrhoea claimed it was more common in "highly strung", "nervous" or "neurotic" women, and speculated how a 'faulty outlook' might lead to "an exaggeration of minor discomfort" (25)."

 

[Jonathan Edwards]

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

Seems to me you can argue this every which way and get nowhere.

The fact that ME affects more women than men is used as 'evidence' that it is an autoimmune disease. In a rheumatology clinic a woman with joint pain and not much to show for it is much more likely to be taken seriously than a man because rheumatoid and lupus are more common in women. So it cuts both ways.

Rheumatoid and lupus have always been considered much more interesting diseases than ankylosing spondylitis, which mostly men get. Breast cancer gets a lot more attention than prostate cancer. I see no consistent pattern in any of this.

 

[Orla]

I still think there is a issue here historically for us with ME, and it is useful to be aware of it. I think it is at least like background noise that influences (or has influenced) some doctors and decisions makers. I think they used to be quite open about this. I think it is still an issue with people pushing the psychiatric agenda, though other issues like neoliberalism are probably a more important driving force now (e.g. the influence of UNUM in the Department of Work and Pensions, privatisation of the NHS).

I went to a talk by a rheumatologist years ago who was speaking about Fibromyalgia (which he considered the same as ME/CFS) and he kept going on in a dismissive way about female patients. This was a talk to a patient group I might add. It was like, for him, female patients was short-hand for neurotic.

 

[Dolphin]

I thought this was an interesting finding. I had previously heard people claim negative attitudes were related to doctors often being male.

https://www.ncbi.nlm.nih.gov/pubmed/15805128

Fam Pract. 2005 Aug;22(4):389-93. Epub 2005 Apr 1.
Chronic Fatigue Syndrome: a survey of GPs' attitudes and knowledge.
Bowen J1, Pheby D, Charlett A, McNulty C.


Abstract
BACKGROUND:
GPs need evidence and guidance to help them diagnose and manage Chronic Fatigue Syndrome (CFS)/ME appropriately.

OBJECTIVES:
The aim of this survey was to obtain baseline data and identify the factors associated with GPs' attitudes to and knowledge of CFS/ME. The attitude of GPs to the condition is an important indicator of likely prognosis.

METHODS:
A postal questionnaire was sent to 1054 GPs served by Taunton, Bristol and Gloucester laboratories. GPs' attitudes to nine statements about CFS/ME were assessed and the factors associated with positive or negative responses were determined. Knowledge of the clinical features was also assessed.

RESULTS:
811 GPs (77%) returned the questionnaire. 48% of GPs did not feel confident with making a diagnosis of CFS/ME and 41% did not feel confident in treatment. 72% of GPs accepted CFS/ME as a recognisable clinical entity and those GPs had significantly more positive attitudes. Three other key factors that were significantly, positively associated with GPs' attitudes were knowing someone socially with CFS/ME, being male and seeing more patients with the condition in the last year.

CONCLUSION:
Despite the publication of guidance for GPs on CFS/ME, confidence with making a diagnosis and management was found to be low. Educational initiatives and guidance for GPs should stress the importance of accepting CFS/ME as a recognisable clinical entity, as this is linked to having a positive attitude and could lead to improved confidence to make a diagnosis and treat CFS/ME patients.

PMID:
15805128
DOI:
10.1093/fampra/cmi019

 

[A.B.]

Actually the evidence for a genetic basis is weak

The material you're quoting doesn't contradict the idea that there is a genetic basis. We know it's there, it's just complex and not yet understood.

Georges Gilles de la Tourette, in describing the syndrome that now bears his name, observed that the condition was familial1. Over the last three decades, numerous studies have confirmed this observation, demonstrated that familiality is in part due to genetic factors, and are now beginning to provide clues about some of the underlying genetic mechanisms important for the manifestation of Tourette Disorder (TD). These studies include family, twin, linkage, candidate gene, cytogenetic, copy number variant, and genome-wide association studies.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4260404/

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.

Agreed, although I think gender bias protests should be reserved for the day there are effective tests and treatments and it is shown that women aren't getting them in comparison to men.

 

[sb4]

Could it be that the gender stigma's is a symptom of us being mistreated and not a cause.

We know that autoimunnity affects women more, and this is probably why more women get ME however psychologists have to sell the idea that its all in the mind. Well, to do this they have to come up with an explanation why it affects women more. Then comes the gender roles/sexism stuff. However, I am sure that if it affected both genders equally then the psychologist would still be trying to sell there shit only now they wouldn't have to explain the gender thing.

I saw in the paper the other day a famous novelist who suddenly couldn't swallow right. He had to drink liquid meals and it took him over an hour. The psychologist had convinced him that he was getting anxious when swallowing and he need to practice calming techniques to swallow right. This guy bought it hook line and sinker. Says he never thought he was anxious however when doing this technique he was able to eat some soft food again, although it took him hours. Absolutely unbelievable, if there is no obvious reason, it's always anxiety with psychologists.

 

[arewenearlythereyet]

I think this thread could go on and on and never be resolved.

My main worry is that if we focus too much on gender discrimination and try and hijack the women's rights agenda, our main message becomes compromised and diluted. I can also see a lot of men getting more discrimination as a result of this being highlighted as a "women's disease".

I also find the argument that if you are being discriminated against for being perceived as weak, you are just being compared to a woman full of holes. I find this psycobabble at its worst....and seems to stem from trying to make data fit to an argument and create a hypothesis that is twistable to any outcome you want. This is exactly what the BPS school do and is contrived (to put it politely).

There are just so many examples of disability discrimination ...are they all about being compared to women? This is the sort of twisting of words that will dilute and fragment the real message which is complicated already.

I'm not saying that these issues don't exist in society, or that we shouldn't fight them. I just don't think it's a big part of why we are where we are now in terms of ME/CFS. We would be better off campaigning that this affects men and women without the distraction of gender discrimination. There are more relevent messages to focus on.

1) it's biological not psychological
2) We need more money being put into bio research
3) disability rights
4) biomarkers and more accurate diagnosis

These are way more important than wasting time and energy communicating women's rights issues. For a good campaign you need clear and snappy messaging and you need to keep ramming it home at every opportunity. Women's rights will just muddy the waters in my opinion.

This is a much bigger issue and way beyond the scope of our little community.

 

[Snow Leopard]

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?

"MUS" is the new term for hysteria/psychosomatic disorders, which no one can deny has a long sexist history.


https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1112627/
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3480686/

Some practitioners state it explicitly:
https://thepsychologist.bps.org.uk/volume-26/edition-12/explaining-unexplained

DSM I/II "Hysterical neurosis" replaced by "somatization disorder" (or conversion disorder) in DSM III, the former replaced with "somatic symptom disorder" in DSM V.

The somatoform disorders were defined in the beginning and were not only a result of these developments. Diagnostic criteria for patients suffering from multiple unexplained somatic symptoms were among the first steps toward the general principle of operationalized diagnosis.
Perley and Guze used modern statistical methods to analyze Briquet’s syndrome and defined a list of bodily symptoms as well as other characteristics to serve as criteria for an objective and reliable diagnosis. Briquet’s syndrome had been derived from hysteria and was later renamed somatization disorder.

From: https://www.researchgate.net/public...Introduce_the_Concept_of_Somatoform_Disorders

We of course know that ME is not a somatization syndrome, but the fact is that historically, most doctors have been trained to believe that if they can't find specific medical signs, then the symptoms must be due to somatisation (psychological factors). Likewise, the myth that women are more "emotional" and thus prone to somatization continues in contemporary medical practise.

 

[TiredSam]

Due to being re-classified as women.

I realise this is purely anecdotal n=1, but I have not been re-classified as a woman.

In my 3.5 years of ME, nobody, expressly or impliedly, has suggested that I'm being a bit of a woman. I have been called lazy, work-shy, obviously psychologically messed up, etc etc, but never accused of exhibiting femine traits, emasculated, told to man up, or any of that gender stuff.

In fact now I think about it, the failings I've been accused of in the context of ME have been mainly male traits - laziness, supressing emotions etc etc.

 

[TreePerson]

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.

Yes and I think also in the UK. There is a LOT more public sympathy for veterans who may justifiably have ptsd or strange illness acquired abroad, than for silly women who probably just imagine they are ill. And it has increased in recent years. The whole poppy thing has gone insane.

 

[TreePerson]

I realise this is purely anecdotal n=1, but I have not been re-classified as a woman.

In my 3.5 years of ME, nobody, expressly or impliedly, has suggested that I'm being a bit of a woman. I have been called lazy, work-shy, obviously psychologically messed up, etc etc, but never accused of exhibiting femine traits, emasculated, told to man up, or any of that gender stuff.

In fact now I think about it, the failings I've been accused of in the context of ME have been mainly male traits - laziness, supressing emotions etc etc.

So a different kind of stereotyping. Out of interest have you been treated any more sympathetically by male or female doctors? Or no difference?

 

[TiredSam]

So a different kind of stereotyping. Out of interest have you been treated any more sympathetically by male or female doctors? Or no difference?

I've hardly seen any doctors, except in the phase when I was getting everything excluded for my diagnosis. Nearly all the doctors I have seen were male. Nearly everyone has treated me well for some reason. Even those who have presented me with batty ideas have done so respectfully and not pushed them when I showed no interest. The times people have been annoying about my ME are few and far between, and most examples are from a few people I know rather than the medical profession.

I don't doubt for a minute the experiences others have had with the medical profession, and I personally know a few ME patients who have been treated horrendously. Just hasn't happened much to me.

I have been told that when I'm annoyed I look like a volcano that's about to explode. Maybe that has something to do with it? I don't know if that's a male or female trait.

 

[Jenny TipsforME]

The point of this thread is that people are saying that the MUS agenda being associated with gender isn't evidenced so we are checking to see if there is good evidence.

I included some of the previous conversations as background, so we don't rehash debates. No one is suggesting that this is the only relevant issue.

It is also a separate issue what we do with this information. If we discover strong evidence it might be that we decide association with femininity is so contaminating that all press case studies from now on are male! Or we decide it is so clearly a gender equality issue we decide people who campaign for gender equality are our best allies. That is a slightly different debate.

The thread is simply to answer the question: is there evidence?

So, we're not looking for anecdotal examples but peer reviewed research and official statistics.

Relevant search terms could be:
Gender/sex/male/female/women/men
+ bias/prejudice/discrimination/difference/Epistemic Injustice
+ healthcare/ doctor encounter/ chronic illness/ long term conditions/ medical/ medically unexplained symptoms/

What else? I'm not thinking we do a formal meta analysis but do relevant results come from searches like this?

 

[Hutan]

I just don't think it's a big part of why we are where we are now in terms of ME/CFS. We would be better off campaigning that this affects men and women without the distraction of gender discrimination.

I don't think it has to be an either or situation. There will be different approaches suiting different situations and different campaigners. Each will gather their own range of allies. I don't think different perspectives and approaches need muddy the waters - and even if they do a bit, think of it more as each combining to make a raging torrent sweeping all before it.

I was just reading this paper about the Tourette's-like outbreak in Le Roy that was widely publicised as being mass hysteria. Until I found this paper, the reports on the incident had almost convinced me that these girls had worked each other into a frenzy of twitching as a result of conversion disorder and copy-cat behaviour. I highly recommend you read it, perhaps after googling and reading some of the reports supporting the psychosomatic diagnosis.

The paper has several different parts to it, and they all make some pertinent points to this thread and to the rise of the idea of MUS. It's an easy, sensible read for a sociological paper. Yes, the authors are bringing a feminist perspective to their analysis, but I didn't find anyone else making this sort of clear-eyed consideration of the issues. So, I think, the more the merrier with respect to campaigning for ME and against easy leaps to diagnoses of conversion disorder/ MUS.

https://www.researchgate.net/public...th_and_outscienced_environmental_inquiry_2015

Teenage schoolgirls in Le Roy, New York, captured the attention of the U.S. public in 2011 and 2012 when they developed acute motor and vocal tics. Dramatic images of the girls’ involuntary movements were briefly seen on national news and social media before clinical neurologists diagnosed the girls with “mass psychogenic illness” and required their retreat from media as part of the cure.

Drawing from perspectives in medical and linguistic anthropology as well as the anthropology of expertise, we interrogate how this diagnosis, called “mass hysteria” in a previous generation of Freudian psychology, came to be favored over attribution to a potential environmental cause.

Neurologists countered the evidential vagueness of environmental claims by suggesting that material proof of psychological origin could lie in fMRI data, contributing to a public narrative on female adolescent brains and rural U.S. communities that foreclosed environmental inquiry.

 

[TreePerson]

Okay @TiredSam okay @Jenny TipsforME. I get it now. I recently saw a video where a male doctor with an Australian accent said that it was obvious ME is not a "real" illness because it affects middle-aged women who are unhappily married. I have no idea if this counts as evidence but I thought I would mention it just in case. Although I expect you are already familiar with it.

 

[Jenny TipsforME]

Whether that is ultimately due to bias against women is a matter of beliefs.

We are trying to find out if it is evidenced, so more than a matter of belief

Despite there being no biomarker, people with Tourettes don't seem to be put in the MUS bucket.

This is interesting. But is it actually because there are psychological associations with Tourette's anyway, they already see it as in the bigger psychology camp?

So the fact that this is a predominantly male disease perhaps has not translated to more research dollars than for ME.

So possibly evidence against what we're saying, though although Tourette's is distressing i don't think the burden of it is equivalent to ME.

Re the paper you just quoted. So is it saying that although environmental causes are as good a theory as conversion disorder, doctors jumped to the conclusion it was conversion because they were girls?

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

Yes this is a good quote. In terms of ME, it is important evidence. They explicitly state reasoning as 'is this a type of hysteria?' 'Well this seems likely because more women get it than men'

this was an interesting finding.

so is this saying patients had a better experience with male doctors? This is interesting although we discussed previously that gender bias also comes from female doctors. All of us internalise gender bias, I do myself. When I skimmed that article about teenage girls I consciously had to resist my own bias about teenage girls working each other up into a frenzy.

 

[Jenny TipsforME]

are there conditions which cause similar level of disability to MUS conditions but are mainly male? How does their research funding compare?

 

[Jenny TipsforME]

Just looking at @Snow Leopard links. A bit distracted by idea that

If [MUS] patients present with apparent non-organic signs or symptoms and are later found to have an underlying disease which might account for some or most of their original problems this is perceived as a hysterical elaboration of the underlying deficit.

From
Medically unexplained neurological symptoms
The risk of missing organic disease is low (that's the subtitle )
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1112627/
Not a misdiagnosis then?! Anyway that is a different discussion...

 

[Jenny TipsforME]

This history of hysteria @Snow Leopard shared concludes

We have seen that both the symptomatic expression of women’ malaise and the culturally specific interpretation of the same malaise witness the changing role of women. From incomprehensible Being (and therefore mean of the Evil) to frail creatures that try, however, to manipulate the environment to their own ends (in Freud's view) to creature arbiter of his fate (in the modern transformation from hysteria to melancholia), where the woman seems to have traded power with the loneliness and guilt.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3480686/

 

[Jenny TipsforME]

The references on this paper are probably useful but I have to rest now.

Knowledge about biological differences between women and men will not reduce bias caused by gendered stereotypes or by unawareness of health problems and discrimination associated with gender inequity. Such bias reflects unawareness of gendered attitudes and will not change by facts only.

https://equityhealthj.biomedcentral.com/articles/10.1186/1475-9276-8-28#Bib1

A theoretical model for analysing gender bias in medicine

• Gunilla RisbergEmail author,
• Eva E Johansson and
• Katarina Hamberg

International Journal for Equity in HealthThe official journal of the International Society for Equity in Health20098:28