• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Gender bias, MUS, Epistemic Injustice: the evidence

sb4

Senior Member
Messages
1,654
Location
United Kingdom
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.
The question is though, why does he say this?

Psychologists have dissmissed this as a psychological disease. This doc believes them. In his head he rationalises it as of course its middle age women with nothing to do in there lives.

Now imagine this disease affected both genders equally. Do you not think that same doctor will still belive the psychs, and this time rationalise it as of course you are complaining of these problems, you have no goals in life, you are work shy, you just need to find a partner and settle down or other such shit.

The problem seems to stem from the psychologists. Sexism is a symptom of the phycs trying to explain it away as mental. I don't think it's a major cause.
 

TreePerson

Senior Member
Messages
292
Location
U.K.
The question is though, why does he say this?

Psychologists have dissmissed this as a psychological disease. This doc believes them. In his head he rationalises it as of course its middle age women with nothing to do in there lives.

Now imagine this disease affected both genders equally. Do you not think that same doctor will still belive the psychs, and this time rationalise it as of course you are complaining of these problems, you have no goals in life, you are work shy, you just need to find a partner and settle down or other such shit.

The problem seems to stem from the psychologists. Sexism is a symptom of the phycs trying to explain it away as mental. I don't think it's a major cause.

It was quite an old piece of film. I think he is dead now. In my opinion he thought that because he was a man. And he was giving his opinion in what I imagine was the late 1980s early 1990s? He certainly felt no embarrassment in saying it. So I think it was cultural for his generation. But I think we are off topic with opinion as it's evidence that Jenny is trying to accumulate.
 
Messages
1,055
My father (a historian) once expressed the view that women were not too long ago considered the property of their husbands and, like cattle are checked by vets (!!!), women are checked regularly by doctors to ensure they are reproductively healthy and able to bear and raise children. Women are groomed to this routine maintenance checking; smears, breast exams, and monitoring during pregnancy etc and as a result feel almost compelled to report health concerns to their doctors in a way that men are not.
Men, he thinks, have been socially conditioned over millennia to only seek medical help if they have an accident and need repairing or at the end of their lives - although only then are they socially permitted to seek health care 'to stop their wives fussing'.
So traditionally seeking medical help is a womanly weakness - unless you're getting a limb sewn back on after wrestling a wild boar or defending your territory!
The patriarchy does both genders a disservice.

But since typing this, I see this thread isn't for opinion - sorry!
 

Hutan

Senior Member
Messages
1,099
Location
New Zealand
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?
Tourettes is seen as clearly having a biomedical cause, even though there does not seem to be stronger evidence for this than for ME.


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

There's Gulf War syndrome. The Le Roy paper argues that people (mainly men) with Gulf War syndrome have been effective in heading off MUS labels. I presume funding is easier to get for GWS than ME given that researchers have said that they try to slip ME research in with GWS studies. Admittedly GWS is more cut and dried, a more homogeneous story, than for ME and the military have money for research and are a defined target for litigation.

A recent example comes from Susie Kilshaw’s work on Gulf War syndrome, which calls for more attention to “sufferers’ own accounts” (2008:220). Her work traces how psychiatry’s suggestion that the syndrome is stress related and thus psychiatric was “fiercely disputed by [UK] veterans” (2008:226) who maintained that their psychological problems were chemically induced. Kilshaw believes that the UK media, which explored the potential of diverse toxic agents, were instrumental in moving the public to support the veterans’ definition of Gulf War syndrome


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?
(This is for the Le Roy case.) Sure, amongst other things.

The neurologists voiced a Freudian understanding of hysteria, even if they called the condition by its modern name. First, their diagnosis of conversion disorder relied on the idea, popularized by late-19th-century case studies, that adolescent girls are particularly susceptible to the illness. In several public interviews, DENT neurologists argued that mass psychogenic disorder is the only diagnosis that can explain why the illness predominantly affected female teenagers.
......
Consider how Mechtler answers a question about adolescent girls in a media interview:
Interviewer: Are adolescent girls somehow more susceptible to this sort of thing?
Dr. Mechtler: They are and—and I’m not sure if we know why. Hippocrates is the father of medicine—used the term hysteria initially. And hysteria or hystera is the uterus. ...
So whatever reason, our forefathers in medicine realized young women—adolescent women—are far more
prone to have this. Doesn’t mean boys can’t have it. One could get into the psychosocial reasons why that oc-
curs, but that’s a discussion that’s too lengthy.

Alluding to the “enviable unity” of high school cheerleaders, Dominus implies that extremes of nonconscious mimicry are gendered female. The editorial staff of the Week embraces this same association:“There’s. . .a theory that cohesive groups, particularly those that wear matching uniforms and excel at synchronized movements, might be more susceptible to mass suggestion” (Week Staff 2012).
... Some journalists and bloggers began to refer to the Le Roy case as “cheerleader hysteria”
(e.g., Bell 2012), even though only a few of the students were cheerleaders.

Then community leaders embraced one of the more implausible explanations, mass psychogenic illness, even when the report noted that the afflicted did not socialize together. The diagnosis ultimately won the public’s approval and outscienced its competitors, in part because neurology appears to have deep cultural and scientific capital

Mass hysteria in Le Roy New York: How brain experts materialized truth and outscienced environmental inquiry (2015) (PDF Download Available). Available from: https://www.researchgate.net/public...th_and_outscienced_environmental_inquiry_2015 [accessed May 25, 2017].



https://www.theguardian.com/lifeand...ria-new-novel-tackles-rare-mysterious-illness
Why do young women seem to be most susceptible? In a 2008 article for this paper, John Waller, associate professor of the history of medicine at Michigan State University and author of A Time to Dance, A Time to Die: The Extraordinary Story of the Dancing Plague of 1518, wrote: "Most experts now think that… girls and women are more likely to succumb due to the frustrations of living in families and societies dominated by men. Others argue that hysteria offers distressed women a legitimate reason to 'check out' from the indignities of daily life." Certainly, the Le Roy girls seemed driven by a quest for perfection.

"When the girls were interviewed on television they'd say things like, 'I had a perfect life, nothing was wrong with me'," says Abbott. "They wanted to be strong and not be the girl with the problems." Yet that desire may have also fueled their symptoms – a piece in the New York Times by Susan Dominus suggested that many of the girls were extremely stressed prior to falling ill.

Checking out from the indignities of daily life! Ha. Some of these girls were having convulsions bad enough to be hospitalised. That's a fair bit of indignity to voluntarily take on to avoid the indignities of daily life.
 

Jenny TipsforME

Senior Member
Messages
1,184
Location
Bristol
@RogerBlack re Gulf War Syndrome this is interesting a whole book about GWS and gender

Impotent Warriors: Gulf War Syndrome, Vulnerability and Masculinity

https://books.google.co.uk/books?id=VZuXPRKFuqgC&pg=PA197&lpg=PA197&dq=gulf war syndrome gender&source=bl&ots=g2p_kRXpFa&sig=RoOuB-NRfdqVUHM6R8NkhnoOx-E&hl=en&sa=X&ved=0ahUKEwjP9pzx4YjUAhUFDcAKHXLADfIQ6AEINjAF#v=onepage&q=gulf war syndrome gender&f=true








Those aren't in the right order sorry, but you can get the gist of it. GWS is considered to be gendered.
 
Last edited:

A.B.

Senior Member
Messages
3,780

Jenny TipsforME

Senior Member
Messages
1,184
Location
Bristol
Gender is cultural. experimental style studies would be better but when I came across this I thought it was an interesting example of gendering an illness.

I certainly don't agree with it as if it is fact. Not sure I'm explaining well.
 

Jenny TipsforME

Senior Member
Messages
1,184
Location
Bristol
Also I guess I'm starting with a few assumptions which may not be the same as everyone? (I don't want to get into a debate on these here, it will distract from collecting evidence, but happy to on another thread)

  1. MUS is culturally constructed. It is not a meaningful distinction, at a biological level, for ANY of the conditions grouped together.
  2. Gender is also culturally constructed (the spectrum of masculinity-femininity which isn't necessarily the same as biological sex of male/female/intersex)
  3. The people who are constructing MUS are psychiatrists/psychologists/doctors
  4. A type of evidence about the MUS-gender link will likely therefore come from the writing of the type of people who are doing this cultural constructing and will include ideas that annoy us, because it evidences how they construct MUS which is annoying to us!
  5. Other types of evidence might be more sociology studies of patient experiences, statistics such as research funding for different conditions.
 

Jenny TipsforME

Senior Member
Messages
1,184
Location
Bristol
Gulf War Syndrome is intriguing in the MUS cluster. The symptoms might be similar but it is predominantly male. This in itself does not prove that MUS isn't related to gender bias, but it is definitely worth looking at. If there's no evidence that GWS (as it's MUS/psychosocial construction) is gendered this might be important. However, this anthropology study is entirely about GWS and gender.

Re credibility of the anthropology book:

The author is Susie Kilshaw she's now a Principal Research Fellow in Anthropology at UCL (an authoritive university). This book is a write up of her PhD which means she'd have had to pass a Viva exam from top academics on it, who would have read it themselves. On the other hand, she'd have been inexperienced when she wrote it.

“This is an important anthropological study, which I believe is set to become a classic. The theoretical perspectives are clearly presented and applied to compelling ethnographic material. The publication of this manuscript will make it accessible to both undergraduate and graduate students of anthropology, as well as students of political science, sociology and military studies.” · Vieda Skultans
Vieda Skultans is someone I knew briefly. She helped me with my dissertation project when I was at uni. She's an appropriate person to give an opinion on this topic.

Also about this book:
“Medical dialogues are rarely solely about medical matters but serve as a proxy for feelings about the self and the way that an individual relates to others. Indeed, the inclusion of transcripts of interviews and discussions is of particular value…a brave book that challenges popular assumptions about Gulf War syndrome; her analysis of the long-term effects of military service will serve as an important record not only for those with an interest in the armed forces, but also for researchers in the field of illness perception.” · The British Journal of Psychiatry

So it seems like this is accepted by the psychiatry establishment too. They're not protesting 'oh no GWS isn't anything to do with gender'. This is the body of people who are also constructing GWS as part of MUS.
 
Last edited:

Jenny TipsforME

Senior Member
Messages
1,184
Location
Bristol
I don't find this one convincing for our questions because fibromyalgia does occur more often in women, so perhaps it is reasonable to want physical findings before diagnosing in men?

I've only read the abstract of this one

Gend Med. 2010 Feb;7(1):19-27. doi: 10.1016/j.genm.2010.01.003.
Gender bias in diagnosing fibromyalgia.
Katz JD1, Mamyrova G, Guzhva O, Furmark L.
Author information

Abstract
BACKGROUND:
Both patient- and physician-centered characteristics may influence disease classification c fibromyalgia (FM).

OBJECTIVE:
This study assessed the diagnostic criteria for FM and how rheumatologists use these criter in clinical practice.

METHODS:
Practicing rheumatologists were surveyed. Participants were asked to read a brief case description of a patient with FM and then to select those criteria most important to them for confirming tt diagnosis. Case studies of either male or female patients were randomly assigned. Data were analyzed using a random forests classification analysis to abstract the strongest variables for distinguishing disease classification--in this assessment, stratified by gender of the case study.

RESULTS:
A total of 61 surveys were analyzed. Four rheumatologists (6.6%) chose the 2 (and only the 2 criteria for FM classification (tender points and widespread pain) proposed by the American College of Rheumatology (ACR). The candidate diagnostic criteria discriminating between rheumatologists (when stratified by gender of the case study) consisted of (1) tender points, (2) normal erythrocyte sedimentatio rate, (3) normal thyroid tests, (4) fatigue, and (5) poor quality of sleep. Of these, the criterion of tender points was chosen by rheumatologists statistically more frequently for male patients (P = 0.047).

CONCLUSIONS:
This study provides insight into the diagnostic thought processes of rheumatologists. minority of practitioners relied solely on the published ACR classification criteria for the diagnosis of FM. We also report gender bias with regard to disease classification, because rheumatologists were more likely to require a physical finding to support a diagnostic conclusion in male patients.
 
Last edited:

Jenny TipsforME

Senior Member
Messages
1,184
Location
Bristol
This is from a booklet which is Guidance for Health Professionals on MUS written by the Royal College of Psychiatrists
<a h
IMG_1438.jpg
"

http://www.rcpsych.ac.uk/pdf/CHECKED MUS Guidance_A4_4pp_6.pdf

It is generally frustrating information, but for the purpose of this thread, it does show that medics are being trained to associate being a woman as a risk factor for MUS (if MUS was a biologically meaningful category this might be valid, but we're assuming MUS is culturally constructed and here it is culturally constructed as likely female).

Logically it follows that the highest % at 12 months is in gynaecology!
 
Last edited:

Jenny TipsforME

Senior Member
Messages
1,184
Location
Bristol
Today I'm trying to find a comprehensive list of MUS conditions. This is a little confusing because of the synonyms eg Persistent Physical Symptoms, somatisation etc. Should it just include MUS? Should it be only lists coming from the UK establishment?

If I have the oomph, I could then add together the gender demographics for all MUS conditions and see how big the gender gap is. Has anyone done this already?

These are relevant lists

Here is more from the presenter et al:

https://www.intechopen.com/books/a-...chosomatics-the-new-neuroconnective-phenotype

Chapter 8


Joint Hypermobility, Anxiety, and Psychosomatics — The New Neuroconnective Phenotype

By Guillem Pailhez, Juan Castaño, Silvia Rosado, Maria Del Mar Ballester, Cristina Vendrell, Núria Mallorquí-Bagué, Carolina Baeza- Velasco and Antonio Bulbena
DOI: 10.5772/60607

... Somatic illnesses include irritable bowel, dysfunctional esophagus, multiple chemical sensitivity, dizziness or unsteadiness (central vestibular pattern), chronic fatigue, fibromyalgia, glossodynia, vulvodynia, hypothyroidism, asthma, migraine, temporomandibular dysfunction, and intolerances or food and drug hypersensitivity. It is envisaged that new descriptions of anxiety disorders and also of some psychosomatic conditions will emerge and different nosological approaches will be required.

Keywords: Anxiety disorders, joint hypermobility, hyperlaxity, psychosomatic medicine, phobic disorders

Full chapter is Open Access and there is also aPDF.