Berkeley Wellness: When Medical Symptoms Are Dismissed as "All in Your Head" (David Tuller interviews Maya Dusenbery)

[Jonathan Edwards]

I got this from a page of the Chicago Tribune dated October 29 1986. Unfortunately the site isn't currently available to Europeans so I'll copy the whole (very short) article here :

That quotes half a dozen odd studies. I cannot see a reason to think they are representative. The text is obviously trying to make a point. If it were really true that women were never studied it would surely not be a question of finding half a dozen studies.

 

[Arnie Pye]

If it were really true that women were never studied it would surely not be a question of finding half a dozen studies.

I wasn't suggesting that women were never studied. How many studies relevant to women but which excluded women would suggest a problem to you?

 

[Jonathan Edwards]

Was their never any element once you were not a student and got into actual practice wherby you came across the attitude from seniors of "never mind all that stuff this is what is really going on?

How would it be known that women would benefit from such experiments if they are not biologically the same as men.

I am not sure what the first comment is about.We are talking about whether or not research was applied equally to mea and women.

The vast majority of experiments designed to study disease would apply equally to men and women. New antimicrobials would affect them equally one would think, trials of new surgical procedures for e.g. colon cancer the same, and so on. Maybe the first kidney donors were all men. I can imagine that women would not be experimented on. We still restrict experiments if women might fall pregnant.

The discovery of cortisol came about because women with rheumatoid got better in pregnancy and Hench suspected that a helpful substance was secreted by the adrenal. Judging by the films I have seen the first patients he tried the new extract on were women.

 

[Jonathan Edwards]

I wasn't suggesting that women were never studied. How many studies relevant to women but which excluded women would suggest a problem to you?

It wouldn't be a matter of how many. It would be a matter of whether it was necessary to subject women to experiments when men could be used and women who might be pregnant were considered best not subjected to experiment. Clearly a study of uterine cancer would require women but presumably men were never involved in those.

This seems like a complete red herring to me. I would be interested to know if women were excluded from studies in a way that was to their disadvantage but I have not heard evidence of that yet.

Maybe the most crucial experiments in medicine were those where antiseptic practices were tried to see if puerperal sepsis could be prevented - by sterilising obstetric forceps. That was a women's problem carried out on women. I doubt anything as significant was carried out on men until penicillin was used on soldiers with war wounds in 1946.

 

[dave30th]

I'd like to see some facts on this.

This won't satisfy you, but here's a link to Harvard Medical School site about heart attacks: https://www.health.harvard.edu/heart-health/gender-matters-heart-disease-risk-in-women
It includes this sentence: "Most of our ideas about heart disease in women used to come from studying it in men." Now that statement doesn't prove anything and I'd have to go back and look at studies from 50 years ago and see if any included women. But I don't have time at the moment.

 

[Trish]

We still restrict experiments if women might fall pregnant.

I can see that is a valid reason for being cautious about testing new drugs that have to be tested first on healthy young adults. There is a genuine problem of using young women if they have any chance of being pregnant.

 

[Jonathan Edwards]

This won't satisfy you, but here's a link to Harvard Medical School site about heart attacks: https://www.health.harvard.edu/heart-health/gender-matters-heart-disease-risk-in-women
It includes this sentence: "Most of our ideas about heart disease in women used to come from studying it in men." Now that statement doesn't prove anything and I'd have to go back and look at studies from 50 years ago and see if any included women. But I don't have time at the moment.

The article is clearly designed to make a gender point so I am not sure whether that statement is more than just a statement of the obvious. When I was an intern I had a male ward where half the patients were coronaries. In the female ward it was about a fifth or less. Moreover, the men with coronaries were quite often in their forties and I remember a GI of 27 with a big infarct. Women got coronary sin their sixties. So yes, most of what we new about coronaries was from men simply because the great bulk of cases were men.

 

[dave30th]

In the female ward it was about a fifth or less.

As I said, it wouldn't satisfy you. What does women being in their 60s having heart attacks have to do with whether they were on wards? Perhaps the cases in women weren't recognized because no one knew they were having heart attacks. In any event, if women have heart attacks in their 60s that wouldn't explain why "the great bulk of cases were men," it would only explain why the bulk of cases of people in their 40s were men. While men in their 40s were having heart attacks, women 20 years older were having heart attacks at the same time but apparently were not on your wards.

 

[Jonathan Edwards]

As I said, it wouldn't satisfy you. What does women being in their 60s having heart attacks have to do with whether they were on wards? Perhaps the cases in women weren't recognized because no one knew they were having heart attacks. In any event, if women have heart attacks in their 60s that wouldn't explain why "the great bulk of cases were men," it would only explain why the bulk of cases of people in their 40s were men. While men in their 40s were having heart attacks, women 20 years older were having heart attacks at the same time but apparently were not on your wards.

David, be reasonable. I was the medical admitting doctor for the whole of the hospital one day a week. I admitted whoever came to the emergency room with chest pain. They all had the same diagnostic procedures. There were about four male coronaries for each female. If you think about it, if coronaries were rarer in women and increased with age (as they were) then it makes sense that the youngest women were older than the men, for simple statistical reasons. There were plenty of men in their 60s with coronaries too but coronaries in women in their forties or fifties were very rare. So that is what women in their 60s having heart attacks has to do with them being on my wards!!

 

[dave30th]

David, be reasonable. I was the medical admitting doctor for the whole of the hospital one day a week. I admitted whoever came to the emergency room with chest pain. They all had the same diagnostic procedures. There were about four male coronaries for each female. If you think about it, if coronaries were rarer in women and increased with age (as they were) then it makes sense that the youngest women were older than the men, for simple statistical reasons. There were plenty of men in their 60s with coronaries too but coronaries in women in their forties or fifties were very rare. So that is what women in their 60s having heart attacks has to do with them being on my wards!!

Jo, of course I understand why there were more men than women in their 40s having heart attacks on the wards. That wasn't the point. The question is where were the women in their 60s having heart attacks, and why weren't they on the wards? Are you saying that the four to one ratio is the ratio of actual heart attacks among people of all ages--that four times as many men as women have heart attacks overall, not just in their 40s? It doesn't make much sense to me, given the high rates of cardiovascular disease among older women, that "the bulk of cases were men"--not just cases of people in their 40s, but of people overall.

 

[Jonathan Edwards]

The question is where were the women in their 60s having heart attacks, and why weren't they on the wards?

They were on the wards. There just wasn't so many of them. By and large women either got breast cancer or carried on until their sixties of seventies and had strokes. Maybe older people with coronaries were more likely to die before getting to hospital so the older women (and men) were under-represented.I don't have precise figures of course but the reality is that most people treated for heart attacks in 1970 were men. I suspect smoking was a big factor. At that time two thirds of men smoked and less than a third of women if I remember rightly.

 

[dave30th]

I don't have precise figures of course but the reality is that most people treated for heart attacks in 1970 were men.

Perhaps. Or perhaps women were dying of heart attacks at a greater than 4-1 ratio and it wasn't being recognized because there was gender bias. Hard to know.

 

[Barry]

They were on the wards. There just wasn't so many of them. By and large women either got breast cancer or carried on until their sixties of seventies and had strokes. Maybe older people with coronaries were more likely to die before getting to hospital so the older women (and men) were under-represented.I don't have precise figures of course but the reality is that most people treated for heart attacks in 1970 were men. I suspect smoking was a big factor. At that time two thirds of men smoked and less than a third of women if I remember rightly.

Yes, if there was a gender bias, then possibly not so much biology as gender-implicated environmental issues.

 

[Trish]

Perhaps this will help settle the argument:
Sex differences in coronary heart disease and stroke mortality: a global assessment of the effect of ageing between 1980 and 2010

Abstract
Background Cardiovascular disease mortality rates are well known to be lower in women than men and to increase with age. Whether these sex and age effects have changed over recent decades, and how much they differ by country, is unclear.

Method From the WHO Mortality Database, we obtained age-specific and sex-specific coronary heart disease (CHD) and stroke mortality rates for the world's most populous countries with data available between 1980 and 2010. We calculated age-specific, country-specific and period-specific men-to-women CHD and stroke mortality rate ratios for 26 countries and compared the differences between and within countries over time.

Results CHD and stroke mortality decreased substantially between 1980 and 2010 in most countries, in both sexes. Mostly there was an attenuation of the effect of ageing over calendar time, more so in men than in women. CHD mortality was higher in men than in women throughout adulthood, but the magnitude of the difference varied by age. Men-to-women CHD mortality rate ratios were 4–5 in middle age (30–64 years) and 2 thereafter (65–89 years). Stroke mortality was more similar between sexes, with men-to-women stroke mortality rate ratios of around 1.5–2 until old age.

Conclusions While CHD and stroke mortality rates declined considerably between 1980 and 2010 in both sexes, there was some indication for stronger age-specific reductions in CHD in men than women. Mortality from CHD and stroke remains higher among men than women until old age across a range of economically, socially and culturally diverse countries.

 

[Trish]

And a separate issue related to men and women's heart attacks is some differences in symptoms which means women in particular may not realise they are having a heart attack:
Article in WebMD:
Women's Heart Attacks: How They Differ

 

[JamBob]

ME/CFS cannot be in such a state of neglect primarily because it affects more women than men. How do I know? There are many illnesses with a similar or higher affected women to men ratio which are not nearly as neglected. There are also neglected illnesses that primarily affect men. This simplistic narrative just doesn't explain much!

Can you give some examples of these neglected diseases that are more predominant in men that continue to be classed by doctors as "psychosomatic" though?

There are plenty of poorly researched diseases out there but which ones that mainly affect men lead to men having their symptoms attributed to weak-mindedness or hysterical thinking?

I can only think of Gulf War Syndrome.

 

[Jonathan Edwards]

Perhaps. Or perhaps women were dying of heart attacks at a greater than 4-1 ratio and it wasn't being recognized because there was gender bias. Hard to know.

I don't think that is plausible. Remember that in 1970 in the UK every unexplained death had an autopsy, which students and junior doctors would attend so I was very familiar with. One thing that was always done was an examination of the heart for arterial disease. In cases where a GP signed off a cause of death without clear causal evidence they would have been likely to put coronary thrombosis or heart failure just because it was easiest so if anything infarcts ere probably slightly over diagnosed.

I don't get the motivation for saying there was some sort of bias based on sexism. Maybe in the US things were altogether more medieval in 1970 but as a doctor in the UK the idea that ones work was affected by sexism seems to me absurd. We may at times have treated all patients with a degree of disdain as 'cases' but the idea that a male case was in some way more interesting than a female case never crossed anyone's mind. Perhaps private medicine is different but I doubt it. My impression is that doctors have always regarded women as a rich source of income.

 

[Keela Too]

When men got the disease, well it meant that they were even more neurotic acting like women!

I was about to say something like this. I suspect this could be a reason that men with ME get treated so badly. How dare these men let down men in general by succumbing to a women’s hysterical condition!! They are perhaps seen as no better than women, and treated as such.

The historical notion of weak women, getting ME like illnesses (attributed to their mental frailty), fuels this. :-(

 

[MSEsperanza]

I think it could be helpful to distinguish more clearly between the question whether there is a medical knowledge gap with regard to biological sex differences and if there is such a gap, whether this is due to gender bias.

To my common sense (prone to errors) it appears to be obvious that when investigators in the past were including only one sex in their studies or when today one sex is over-represented in trials, then you simply cannot know whether the findings are equally relevant for the other sex. Otherwise the premise would be that beyond their different reproduction "equipment", there are no medically relevant biological differences between the sexes. However, @Jonathan Edwards provided examples both for medical conditions in which the premise seems to apply (colon cancer surgery, microbial infection) , and others were it does not (autoimmunity.)

@Trish provided an article which states that signs indicating a heart attack can differ between the sexes. To me it appears that these differences could also occur because women and men perceive and desrcibe their symptoms differently. But this might not be true at all or only a partial explanation. Thus, to me two additional questions arise.

Firstly, is it really known in which medical conditions sex differences are relevant and in which not? If this is not known, then there would automatically always be a knowledge gap arising from trials in which one sex is over-represented. This then would be also true for medical conditions that are unequally distributed between the sexes unless the trials had sufficiently large female and male subsets (don't have a better wording ATM, hope it is clear what is meant?).

So the second question would be, (why) are medical studies in general not having female and male subsets large enough to be sure about potential differences?

I think it is a distinct questions how socially and culturally shaped gender stereotypes might affect these general questions systematically. But it seems to me that at least individual professionals as well as specific groups (e.g. MUS inventors) in the medical world are influenced by diverse biases including gender stereotypes ( e.g. male rationality vs. female irrationality) and that this can lead to bias in the research on and treatment of both women and men.

 

[Jonathan Edwards]

So the second question would be, (why) are medical studies in general not having female and male subsets large enough to be sure about potential differences?

Is there any reason to think that? Much of the time there seems to be no obvious reason to make a distinction but where there is a reason it is usually done. Risk estimates in cardiovascular disease take into account sex difference in all sorts of ways. I think it is pretty unusual to have an unrepresentative gender ration in a study - simply because it limits the recruitment rate if you do.

There are some unexpected differences even in cardiovascular disease. When rheumatic fever was common women got mitral stenosis and men got aortic valve disease. The women did much better because successful mitral valvotomy presided effective aortic valve surgery by decades. All the figures were presumably on women at that stage. So where a major difference occurs (including having babies) it has been reflected in research. The paper on women with heart attacks looks pretty small print to me.