Gender bias, MUS, Epistemic Injustice: the evidence

[Jenny TipsforME]

The term "functional somatic syndromes" has been in use as an umbrella term for a collection of conditions and illnesses since before 1999, in the US, UK and in other countries.

Two of the early users, here:

A US paper:

https://www.ncbi.nlm.nih.gov/pubmed/10375340

Ann Intern Med. 1999 Jun 1;130(11):910-21.
Functional somatic syndromes.
Barsky AJ1, Borus JF.

A UK paper:

https://www.ncbi.nlm.nih.gov/pubmed/10489969

Lancet. 1999 Sep 11;354(9182):936-9.
Functional somatic syndromes: one or many?
Wessely S, Nimnuan C, Sharpe M

A search for the term on PubMed will bring up over 180 papers:

https://www.ncbi.nlm.nih.gov/pubmed/?term="functional+somatic+syndromes"

going back to 1999.


See also

August 2008 Special Report co-authored by Javier Escobar, MD, and Humberto Marin, MD, for Psychiatric Times: Unexplained Physical Symptoms What’s a Psychiatrist to Do?

Dr Escobar was a member of the DSM-5 Task Force and served as Task Force liaison to the Somatic Symptom Disorders Work Group:
.”

In Table 1, under the heading “Functional Somatic Syndromes (FSS)” Escobar and Marin list:

Irritable bowel syndrome, Chronic fatigue syndrome, Fibromyalgia, Multiple chemical sensitivity, Nonspecific chest pain, Premenstrual disorder, Non-ulcer dyspepsia, Repetitive strain injury, Tension headache, Temporomandibular joint disorder, Atypical facial pain, Hyperventilation syndrome, Globus syndrome, Sick building syndrome, Chronic pelvic pain, Chronic whiplash syndrome, Chronic Lyme disease, Silicone breast implant effects, Candidiasis hypersensivity, Food allergy, Gulf War syndrome, Mitral valve prolapse, Hypoglycemia, Chronic low back pain, Dizziness, Interstitial cystitis, Tinnitus, Pseudoseizures, Insomnia, Systemic yeast infection, Total allergy syndrome.

 

[Jenny TipsforME]

I'd heard asthma mentioned but that doesn't seem to be coming from these lists.

 

[Jenny TipsforME]

All somatoform disorders are more common among women than men in the general population; in one study, somatization and conversion disorders were seen only among female participants (Faravelli et al. 1997). In another study, gender rate of somatoform pain disorder was 2:1 in the general population (Grabe et al. 2003a). In a town in western Turkey, the prevalence of conversion disorder was 1.6% among men but 8.9% among women in the general population (Deveci et al. 2007). The age group 15–34 and those who had a mother with a psychiatric disorder were at risk in particular. In medical settings, somatoform disorders among internal medical patients are especially prevalent among young women (Fink et al. 2004). According to medical public outpatient records in Finland, somatization was associated with female sex, lower educational level, and increased psychiatric morbidity (Karvonen et al. 2007). More girls than boys are affected by somatoform disorders also among adolescents (Essau et al. 1999). Thus, the predominance of women among subjects with MUS is a common finding shared by studies in diverse cultures, on various age groups, and both in clinical and non-clinical settings.

Medically unexplained symptoms in women Vedat S

http://oxfordmedicine.com/oso/search:downloadsearchresultaspdf;jsessionid=669A7F8C4002A83FE12D719C99DF2EF5?isQuickSearch=true&pageSize=10&q=psychiatric comorbidities&sort=relevance&t1=OXMEDO_SERIESxford_textbooks_in_psychiatry

Can read more here https://books.google.co.uk/books?hl...dically unexplained symptoms in women&f=false

 

[Jenny TipsforME]

As long as you accept the assumption that MUS isn't biologically meaningful but is a social construct, I think that might be enough evidence actually.

Is anyone convinced that MUS is socially constructed and unhelpful but still unconvinced of the link with gender?!

 

[RogerBlack]

Is anyone convinced that MUS is socially constructed and unhelpful but still unconvinced of the link with gender?!

I'm sure it's linked, in that there is an arguable correlation between symptoms of MUS and diseases/symptoms more common (or said to be more common) in females.

The obvious question is then if there is a causation, which is not one that I'm sure can be answered.

- A causation for the 'modern' MUS approach that is, that is explicitly gender biased.
I would have no problem with arguments around the result being biased.

I question again the meaning of the question.
Yes, this should be raised in the context of the treatment of women in the healthcare system.

But the in-depth hard-to-prove, and arguable case about how we got to MUS must not detract from the rather simpler case that MUS is based on bad evidence, and does not actually work and the claims of savings are either illusory or due to severe misdiagnosis and bad accounting of the full costs of delayed diagnosis.

(As an aside, I have a hard time imagining interventions in diagnostic quality that are specific to women having much benefit over improving the diagnostic quality generally.(not solely for CFS))

 

[Jenny TipsforME]

The obvious question is then if there is a causation

Causation is always trickier to evidence than correlation but I think there are examples in this thread. Definitely examples of circular logic between gender and the nature of MUS. Need to come back when more awake.

In terms of a genealogy of ideas, MUS is a clear descendant of hysteria. There is a link in this thread about that. This is causal, both in terms of where MUS comes from and why it has been tolerated as much as it has.

I think it is important to understand the complex nature of the MUS agenda in order to then move on to strategies to combat it (which shouldn't be a public discussion on PR).

The explainability of symptoms does not really seem to be the crux of what it is about. Which also means we won't be able to defeat it that way. We need to turn it around and analyse the discourse of the psychiatrists.

I think there could be other threads on this which are also important. Eg discourse around cost cutting vs patient interests. But that doesn't take away from attitudes about gender being an important aspect of MUS.

 

[SamanthaJ]

Interesting that one of the MUS lists mentions pain from breast implants. I think that list pre-dates the Pip implant scandal (implants were poor quality and were rupturing), but there would be an obvious financial incentive for various parties to deny there were post-surgery complications.

Just pondering aloud that perhaps with the MUS agenda in general, money is the motivation but exploiting existing prejudices is the method. It's strange that, with the exception of GWS, there are no male-only or male-dominated conditions on these lists.

 

[Jenny TipsforME]

money is the motivation but exploiting existing prejudices is the method

I'm not sure yet how the relationship with gender bias fits in. It will be something like this (probably not consciously?). We cause them to feel uncomfortable for various reasons (heartsink) and we are perceived to waste public money on unnecessary testing (though it's only classed as unnecessary because they've already decided there isn't an appropriate test they've missed).

Society will tolerate women (and a minority of men with symptoms associated with feminine weakness) being denied relevant research, tests and treatment, so this can be a cost cutting strategy which is relatively unchallenged.

 

[soti]

I am foggily remembering some MUS nonsense which requires more "unexplained" symptoms in women to diagnose ...something... than in men, anyone remember where that comes from? Why did they do that? Probably to make the numbers turn out "right".

But, thought experiment (with apologies to Dr. Seuss). Let's say that star-bellied sneetches generally present with more wugs that I can't explain than plain-bellied sneetches do.

Evidence that star-bellied-ism is at work could come in in two places.

First, I could not be looking for explanations as hard with star-bellied sneetches as I do with those without stars upon thars. So, the question here is simple: how do two sneetches of opposite star valence but with identical presentations fare?

The second place it could come in is, to what do I attribute those excess unexplained wugs? Do I attribute them to the inscrutable bloodymindedness of sneetches with unexplained wugs (ahem, "those bastards don't want to get better")? What we are asking is whether this thought actually has (in part) at its root an idea about star-bellied sneetches, even though it is ostensibly about sneetches in general, whether star-bellied or those without stars upon thars, who happen to have "unexplained" wugs. This question is much harder to answer because it is about people's thoughts. The history of the thought seems relevant; does it stem historically from ideas about star-bellied sneetches? But it's in principle possible that someone could have the thought without knowing anything about the history, so it's possible to have a disagreement about whether history is relevant. I think this is where some of this discussion is at the moment.

 

[Jenny TipsforME]

I think this is one of the points of disagreement yes.

But it's in principle possible that someone could have the thought without knowing anything about the history, so it's possible to have a disagreement about whether history is relevant

In terms of gender stuff we are all implicitly brought up with these ideas, even if some haven't read an explicit history of it. Most parents know it is nigh on impossible to bring your child up as gender neutral.

I would say the history is very relevant even if most people don't know it is. There won't be a single doctor or patient who hasn't absorbed these ideas from the culture around them. I know I have and it is hard to resist even though I know about it.

Also the opposite star valence thing isn't quite as straightforward. We've discussed how men can be tainted by association with feminine symptoms (e.g. The GWS example). It is an emasculating experience. In your analogy it's almost like doctors start to think they see stars on the bellies of sneetches that don't have any stars. So even if they treat both types of sneetches the same, it doesn't prove that they don't take stars into account. To get evidence you need to compare with different types of wugs which are either gender neutral (same sort of incidence in no/stars and without associated gender meaning) or wugs that tend to occur mostly in plain-bellied sneetches.

 

[emsho]

In terms of gender stuff we are all implicitly brought up with these ideas, even if some haven't read an explicit history of it. Most parents know it is nigh on impossible to bring your child up as gender neutral.

I would say the history is very relevant even if most people don't know it is. There won't be a single doctor or patient who hasn't absorbed these ideas from the culture around them. I know I have and it is hard to resist even though I know about it.

 

[soti]

Also the opposite star valence thing isn't quite as straightforward. We've discussed how men can be tainted by association with feminine symptoms (e.g. The GWS example). It is an emasculating experience. In your analogy it's almost like doctors start to think they see stars on the bellies of sneetches that don't have any stars. So even if they treat both types of sneetches the same, it doesn't prove that they don't take stars into account. To get evidence you need to compare with different types of wugs which are either gender neutral (same sort of incidence in no/stars and without associated gender meaning) or wugs that tend to occur mostly in plain-bellied sneetches.

Great! Ok. Right, so the question there is how do we know if doctors are or are not hallucinating stars? We're back to thoughts again (or "meaning" as you have it there, same idea). Or GWS (tends to occur mostly in plain-bellied sneetches). But as some have pointed out GWS has other characteristics which could be explanatory. I'm starting to think that maybe there's no straightforward answer that doesn't go through interpreting thoughts/meaning, which would mean that there would be no knock-down evidence possible (at least in the current world; so not in principle impossible, just actually not possible).

 

[Cheshire]

On Invisible Illness, Gender, and Disbelief
Kate Horowitz

Experts in every imaginable specialty labeled me a malingerer, hypochondriac, hysteric, drama queen. I was diagnosed with an eating disorder and an anxiety disorder. I was prescribed Xanax and threatened with institutionalization. An emergency room doctor sent me home with “women just have pain sometimes.” An allergist told me I was breaking into hives because I wanted attention. “You must like feeling special,” he said.

https://www.bitchmedia.org/article/performance-lifetime/invisible-illness-gender-and-disbelief

 

[Hip]

Is this marginalisation of patient voice in MUS conditions related to being majority female?

I can imagine womens' voices being ignored by doctors decades ago, but not these days, where it seems that women are increasingly jumping into the driving position, and ushering men into the passenger seat.

I know someone who teaches dance to couples that are going to get married. She tells me that one of the difficulties is that in the majority of couples she teaches, it is the women who are in charge of the relationship, and who "wears the trousers".

Thus when it comes to dancing, the woman also naturally assumes the leading role, taking charge of the dance. But in fact, traditional dances are designed for the man to lead. So then this teacher has to try to make the women understand that in the dance, the guy needs to lead, and she must yield to his cues. But the woman, being so used to leading the relationship, finds it hard to let the man take control of the dance; but eventually gets the idea.

So that's my little anecdote of contemporary society, in London at least (I rarely get out myself, so I have to rely on other people's social observations to keep in touch).

Thus I cannot myself see that these days, women are going to be ignored by their doctor.

In the time of McEvedy and Beard's 1970 paper saying ME = mass hysteria, that may be a different story, and possibly the fact that women were, due to social expectations, still quite demure in that era, that may possibly have been a factor that allowed McEvedy and Beard to get away with peddling their nonsense.

 

[SamanthaJ]

On Invisible Illness, Gender, and Disbelief
Kate Horowitz



https://www.bitchmedia.org/article/performance-lifetime/invisible-illness-gender-and-disbelief

Great article, all too familiar a story.

 

[Jenny TipsforME]

I'm struggling right now cognitively but I don't think

I'm starting to think that maybe there's no straightforward answer that doesn't go through interpreting thoughts/meaning

We have access to their thoughts through their speech and writing. The earlier quote about ME and being mainly women seemed quite straightforward to me. But I don't really think anything is completely objective, most things are interpreted to some extent. This shouldn't be a reason to say we can't get to fairly firm conclusions, or we'd say it about everything.

There may also be experimental social psychology evidence eg experiments where gender is played with artificially. If people can find that

 

[SamanthaJ]

There may also be experimental social psychology evidence eg experiments where gender is played with artificially. If people can find that

I seem to remember reading about a study where doctors were presented with hypothetical cases with heart attack symptoms, the only difference being whether the hypothetical patient was male or female. I probably don't even need to tell you what happened. Not sure if this is the kind of thing you mean, but I'll try to track down where I read it.

 

[SamanthaJ]

A series of studies led by psychologist Gabrielle R. Chiaramonte in 2008 provides some clues as to why that may be. In the first study, 230 family doctors and internists were asked to evaluate two hypothetical patients: a 47-year-old man and a 56-year-old woman with identical risk factors and the “textbook” symptoms—including chest pain, shortness of breath, and irregular heart beat—of a heart attack. Half of the vignettes included a note that the patient had recently experienced a stressful life event and appeared to be anxious. In the vignettes without that single line, there was no difference between the doctors’ recommendations to the woman and man. Despite the popular conception of the quintessential heart attack patient as male, they seemed perfectly capable of making the right call in the female patient too.

But when stress was added as a symptom, an enormous gender gap suddenly appeared. Only 15 percent of the doctors diagnosed heart disease in the woman, compared to 56 percent for the man, and only 30 percent referred the woman to a cardiologist, compared to 62 percent for the man. Finally, only 13 percent suggested cardiac medication for the woman, compared to 47 percent for the man. The presence of stress, the researchers explained, sparked a “meaning shift” in which women’s physical symptoms were reinterpreted as psychological, while “men's symptoms were perceived as organic whether or not stressors were present.”

https://psmag.com/social-justice/is-medicines-gender-bias-killing-young-women#.3f1m573kv

I'm not sure this was the one I'd seen before, but it's a similar theme.

 

[soti]

Very nice! Yes, I think we need to go experimental to make broad claims (where people have not left us convenient breadcrumbs in their writing).

 

[Jenny TipsforME]

@SamanthaJ yes that's exactly the type of thing I mean. Are there any like this for MUS, or the various conditions involved?

"But when stress was added as a symptom, an enormous gender gap suddenly appeared. Only 15 percent of the doctors diagnosed heart disease in the woman, compared to 56 percent for the man, and only 30 percent referred the woman to a cardiologist, compared to 62 percent for the man"
I had this experience, but for me it wasn't heart attack (I think) or anxiety but undiagnosed POTS (which takes us back to MUS territory). But that's an anecdote so I won't go into details here.