Gender bias, MUS, Epistemic Injustice: the evidence

[lilpink]

I can imagine womens' voices being ignored by doctors decades ago, but not these days

So that's my little anecdote of contemporary society, in London at least

How then do do you explain that in London women are nearly 4 times as likely to be diagnosed with MUS? ("Medically Unexplained Symptoms (MUS) Project implementation report March 2011" NHS Commissioning for London. page 14- 4.2.1 Gender In total, significantly more female patients (79%) than male patients (21%) were identified with MUS. Each practice identified a statistically similar proportion of male and female patients.

 

[SamanthaJ]

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

I can't think of any off the top of my head, but I think there's bound to be. If I find any or remember any I'll post them here. I've seen a few references to dysautonomia patients being misdiagnosed with anxiety, I'll keep a lookout for stats or studies.

 

[SamanthaJ]

http://www.misstreated.org/reading/

To be going on with, this is a long list of links to articles on sexism in healthcare, with some studies listed near the bottom. I'm still sifting through this. Pain being under-treated in women is a common theme.

 

[Hip]

How then do do you explain that in London women are nearly 4 times as likely to be diagnosed with MUS? ("Medically Unexplained Symptoms (MUS) Project implementation report March 2011" NHS Commissioning for London. page 14- 4.2.1 Gender In total, significantly more female patients (79%) than male patients (21%) were identified with MUS. Each practice identified a statistically similar proportion of male and female patients.

MUS conditions generally affect women more than they do men; for example, for ME/CFS, the female to male ratio is 4:1, so therefore you would expect around 4 times as many women to be diagnosed with ME/CFS.

IBS, another MUS condition, has a female to male ratio of 2:1. This study on fibromyalgia found the female to male ratio to be 9:1.


Autoimmune diseases are another group of diseases which are more common in females. This comment gives some figures:

female:male ratios in Autoimmune Diseases: Hashimoto's thyroiditis 10:1, Systemic lupus erythematosus 9:1, Sjogren's syndrome 9:1, Antiphospholipid syndrome-secondary 9:1.

 

[lilpink]

MUS conditions generally affect women more than they do men; for example, for ME/CFS, the female to male ratio is 4:1, so therefore you would expect around 4 times as many women to be diagnosed with ME/CFS.

IBS, another MUS condition, has a female to male ratio of 2:1. This study on fibromyalgia found the female to male ratio to be 9:1.


Autoimmune diseases are another group of diseases which are more common in females. This comment gives some figures:

That would make sense if 'MUS' was something that could be measured as a quantifiable disease entity like the autoimmune diseases you mention. MUS is simply a construct which has been engineered, and clearly engineered to have a gender bias to the detriment of the female of the species.

 

[Jonathan Edwards]

That would make sense if 'MUS' was something that could be measured as a quantifiable disease entity like the autoimmune diseases you mention. MUS is simply a construct which has been engineered, and clearly engineered to have a gender bias to the detriment of the female of the species.

I think Hip has a point here. If one takes conditions like ME/CFS at face value then presumably the higher proportion of women is real. I suspect that IBS and fibromyalgia are even more heterogeneous than ME/CFS but again if one accepts that they are real symptom complexes then the higher female prevalence is real.

If these conditions are then redefined as MUS then the gender bias is not engineered. It is the redefining that is the engineering. If additional women are being diagnosed with MUS, who do not in fact have ME or IBS, then what do we think their symptoms are due to? Doctors cannot increase the number of people who actually have ME by making an inappropriate diagnosis!

It may be relevant that before we had 'CFS', in the 1940s we had 'effort syndrome' which was much more commonly diagnosed in males, presumably because soldiers were men and having a fatiguing illness was something that could not be ignored if you were a soldier whereas for women it could be.

 

[JamBob]

That would make sense if 'MUS' was something that could be measured as a quantifiable disease entity like the autoimmune diseases you mention. MUS is simply a construct which has been engineered, and clearly engineered to have a gender bias to the detriment of the female of the species.

Doctors can't diagnose men with fibromyalgia, ME, interstitial cystitis or IBS if men don't present as frequently with those symptoms. In the same way that women don't get diagnosed with "psychosomatic" ball pain at the rate men get diagnosed with it (if at all). If men present less often with ME or Fibromyalgia then men won't be labelled with MUS as frequently.

Before the advent of MUS, conditions like MS (which occurs more frequently in women) were misdiagnosed as "psychosomatic". Once the underlying mechanism for MS was discovered, doctors no longer label the disease as psychosomatic. Same for ulcers (that occur more in men) and plenty of other diseases.


Here's an example of how doctors write about men with chronic testicular/groin pain who may have chronic groin/testicular pain after interventions or clear investigations. Is it sexist? Or is it just than when doctors don't have an answer - they reach (by default) to psychological explanations:

In the evaluation of any chronic pain syndrome, it is notable to consider psychological evaluation, as there seems to be a high association between pain syndromes and depression and anxiety. Men with chronic scrotal content pain may also carry addictive personalities and demonstrate alcohol, drug, and tobacco abuse. A more difficult and sensitive topic to broach with chronic pain syndromes is any history of emotional, physical, or sexual abuse.

http://urologytimes.modernmedicine....iculargroin-pain-medical-and-surgic?page=full

 

[Wolfiness]

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.

Can you reliably extrapolate overall gender dominance from wedding preparations?  Are there bossy blokes going "Stop playing Jewel Quest, Melissa, we need to learn the foxtrot before I drive off to pick the table rosettes!" ?

 

[Hip]

Can you reliably extrapolate overall gender dominance from wedding preparations?

That's just one anecdote, but it is part of a wider set of observations. In most of the relationships and marriages of my friends and relatives, it's the women who appear to be more in the driving seat than the men. And you can often see this on the TV news as well: whenever a couple are interviewed for whatever reason, it usually tends to be the woman who acts as the spokesperson for the couple, not the man. And the guy just sits there quietly listening, and seems quite content with this. (Of course an alternative interpretation would be that there's a gender bias in journalism, which edits out the man's speech in favor of the woman's).

Whereas according to a documentary I was watching, in the 1960s, when women were at a party or social event, they would feel it was not their place to enter into the conversations, that was for the men. Only when they were addressed by a man, and invited to say something, would they do so. Quite amazing, I had no idea that was the situation in the 1960s, but that was the report of some of the 1960s female celebrities in this documentary.

So in terms of a voice, women's seem much strong these days, compared to decades ago.

 

[Wolfiness]

People who have actually tried being a woman find things considerably less rosy, as a rule. Try something like this and get back to us.
https://qz.com/929446/two-colleague...-uncovered-a-huge-workplace-hurdle-for-women/

 

[soti]

or this... https://med.stanford.edu/news/all-n...-scientist-to-critique-gender-difference.html

 

[lilpink]

It is the redefining that is the engineering.

I think that's what I said. It' s certainly what I meant.

 

[lilpink]

Here's an example of how doctors write about men with chronic testicular/groin pain who may have chronic groin/testicular pain after interventions or clear investigations. Is it sexist? Or is it just than when doctors don't have an answer - they reach (by default) to psychological explanations:

Of course it is exactly that. But let's look at what doctors are taught about MUS. In the BMJ book ABC of medically unexplained symptoms there are 3 pages ( a whole chapter ) dedicated to 'Pelvic and Reproductive System Symptoms' in women and only one sentence at the end of the chapter referring to chronic testicular pain in men that 'may' equate to women's chronic pelvic pain. Doctors are repeatedly told to expect female MUS predominance so no surprise that so many are diagnosed with it. And yes, it may be that these MUS conditions are diseases that, like ME/CFS, have an autoimmune basis and so a female predominance......but isn't it rather sexist then to refuse to do proper biomedical research into these conditions and ignore biomedical findings in favour of a psychiatric explanation?

 

[Jonathan Edwards]

Of course it is exactly that. But let's look at what doctors are taught about MUS. In the BMJ book ABC of medically unexplained symptoms there are 3 pages ( a whole chapter ) dedicated to 'Pelvic and Reproductive System Symptoms' in women and only one sentence at the end of the chapter referring to chronic testicular pain in men that 'may' equate to women's chronic pelvic pain. Doctors are repeatedly told to expect female MUS predominance so no surprise that so many are diagnosed with it. And yes, it may be that these MUS conditions are diseases that, like ME/CFS, have an autoimmune basis and so a female predominance......but isn't it rather sexist then to refuse to do proper biomedical research into these conditions and ignore biomedical findings in favour of a psychiatric explanation?

I don't think you can draw that conclusion. In rheumatology lupus and ankylosing spondylitis are about equal in prevalence with one skewed heavily to females and the other to males, but there is about ten times as much research into lupus. The absence of biomedical research in ME and other conditions lumped as MUS is the common feature that there are no leads to follow - no autoantibodies or B27 genes. Until B27 was discovered (by pure luck - the ank spond samples were tested as 'irrelevant controls' ) research into ankylosing spondylitis was more or less zero.

 

[Hip]

People who have actually tried being a woman find things considerably less rosy, as a rule. Try something like this and get back to us.
https://qz.com/929446/two-colleague...-uncovered-a-huge-workplace-hurdle-for-women/

I agree it's difficult to appreciate what it is like to be in someone else's shoes. But I don't think women are the only sex that look over the other side of the fence, and feel that the grass is greener there. I know guys who think women have it a lot better, in terms of quality of life (although they may be reluctant to admit it).

Though the topic of this thread relates to whether women patients' voices are being heard or marginalized in the context of MUS illnesses, so perhaps we should not sidetrack into a "whose got it better in life" discussion, interesting though that might be.

 

[Hip]

One area of medicine that I suspect doctors may be ignoring patient's voices is the hypothyroidism cases in which T4 hormone alone does not seem to produce optimum results, and many patients feel much better when T3 is added to their medication regimen.

This article nicely explains it:

Treating Thyroid patients like children

Here is an imagined, but not far off the truth, conversation between a doctor and a patient.

‘Why can’t I have T3 doctor? I feel so much better when I do?’

‘Because I say so, now go away.’

Nowadays doctors, at least when they are in training, are repeatedly told that they must NEVER be paternalistic. To do so will result in immediate censure. In the UK it is also a very rapid way of failing the GP entrance exams. We are told that we must explore the patients’ expectations, listen to their worries and fears, and work with them in partnership to lead to a therapeutic partnership…. or some such left wing bollocks. [Joke]

How exactly that fits within the National Institute of Health and Care Excellence (NICE) guidelines is up for grabs. For those who don’t know, NICE decide on which drugs and interventions can be prescribed, or paid for, within the NHS. So you can explore expectations with your patient till the cows come home, only to find that you cannot prescribe what the patient wants, even requires. Even if it makes them feel much better and costs very little. Would you call this paternalism?

This issue with refusing to prescribe T3 has gone on for decades, with the NHS / GMC not budging from its stubborn position of paternalistically ignoring patients.

Since the female-male ratio in hypothyroidism is 6:1, it does make you wonder whether there is some ignoring of female patients' voices and opinions going on. It's possible I guess.

But it may also be simply due to the systemic stupidity of the NHS / GMC on such matters; an organizational dumbness that results in difficulties in actually listening to patients — of any gender.



There's been an activist movement of patient opinion that T3 is needed is some hypothyroid patients for decades, and in the UK, this has been expressed on websites and forums such as www.thyroiduk.org.uk, stopthethyroidmadness.com and www.tpauk.com.

Yet there is a chasm between the NHS at an organizational level, and this groundswell of patient opinion. It reminds me of contemporary politics, and the disconnect between the liberal elite, and the blue collar workers whose worsening plight this elite was not even dimly aware of. How does such blindness happen?

 

[Jenny TipsforME]

Sorry I'm not well enough to keep up at the moment, but I haven't lost interest.