Book due out: "Doing Harm: The Truth About How Bad Medicine and Lazy Science Leave Women Dismissed, Misdiagnosed, and Sick by Maya Dusenbery"

[Andy]

In this shocking, hard-hitting expose in the tradition of Naomi Klein and Barbara Ehrenreich, the editorial director of Feministing.com, reveals how inadequate, inappropriate, and even dangerous treatment threatens women’s lives and well-being.

Editor of the award-winning site Feministing.com, Maya Dusenbery brings together scientific and sociological research, interviews with experts within and outside the medical establishment, and personal stories from women across the country to provide the first comprehensive, accessible look at how sexism in medicine harms women today.

Dusenbery reveals how conditions that disproportionately affect women, such as autoimmune diseases, chronic pain conditions, and Alzheimer’s disease, are neglected and woefully under-researched. "Contested" diseases, such as fibromyalgia and chronic fatigue syndrome, that are 70 to 80 percent female-dominated are so poorly understood that they have not yet been fully accepted as "real" conditions by the whole of the profession. Meanwhile, despite a wealth of evidence showing the impact of biological difference between the sexes in everything from drug responses to symptoms to risk factors for various diseases—even the symptoms of a heart attack!—medicine continues to take a one-size-fits-all approach: that of a 70 kilogram white man.

In addition, women are negatively impacted by the biases and stereotypes that dismiss them as "chronic complainers," leading to long delays—often years long—to get diagnosed. The consequences are catastrophic. Offering a clear-eyed explanation of the root causes of this insidious and entrenched bias and laying out its effects, Doing Harm will change the way we look at healthcare for women.

http://amzn.eu/6mqS5AX

I would guess that this will be available in outlets other than Amazon.

 

[Arnie Pye]

I might buy that. It's nearly £20 in hardcover, but only 99p in Kindle format. And you don't even need a Kindle to read Kindle format books.

Edit : I just bought the book for Kindle. And only then did I realise that it won't be delivered until 6 March 2018.

 

[Jonathan Edwards]

Perhaps it has not occurred to Ms Dusenbery that the reason why Alzheimer's disproportionately affects women is that all the poor men are dead of male dominant diseases before they get old enough.

So I was a lazy scientist doing bad medicine all my life studying RA, was I?

The 70kg standard for drug dosing is actually for women not men. The average weight of men is higher. In RA the average is 72kg, with 75% women.

There is nothing like feminists whingeing like this to put men off researching female diseases for good.

 

[Esther12]

From the author:

 

[Allele]

There is nothing like feminists whingeing like this to put men off researching female diseases for good /s

FTFY

 

[TiredSam]

There is nothing like feminists whingeing like this to put men off researching female diseases for good.

So it's true that complaining patients put researchers off? Looks like the BPS crew were right all along, and we'd all better shut up and be grateful.

Hopefully some of the splendid women researching my disease (the list of names is long) have a more mature attitude, and won't threaten to down tools and abandon a whole patient population the next time I kick off with my big mouth.

 

[Trish]

Perhaps it has not occurred to Ms Dusenbery that the reason why Alzheimer's disproportionately affects women is that all the poor men are dead of male dominant diseases before they get old enough.

So I was a lazy scientist doing bad medicine all my life studying RA, was I?

The 70kg standard for drug dosing is actually for women not men. The average weight of men is higher. In RA the average is 72kg, with 75% women.

There is nothing like feminists whingeing like this to put men off researching female diseases for good.

I can see why you are sensitive about generalisations being made that don't apply to you. Men like you who behave in exemplary fashion in their medical practice, may justifiably feel unreasonably attacked by this sort of feminist polemic. Of course none of us here think you were a lazy scientist.

Although I'm a feminist, I don't intend to read this book. Like you I was put off by her argument about Alzheimers' and the fact that she didn't seem to have taken into account the average earlier death of men.

If there is discrimination against women patients in medicine, I suspect it is largely in areas where the psychiatrists following the Freudian 'hysterical woman' narrative that the main problem arises - and male patients get caught up in this and suffer the same discrimination too.

This seems to be particularly true with conditions like ME and some of the other 'medically unexplained symptoms' like fibromyalgia, IBS, POTS etc. The sooner we can get these out of the hands of the psychiatrists and psychologists, and into the hands of 'proper doctors' like you, the better.

On another of your points, do you have any idea why men on average die younger than women?

 

[Barry]

Perhaps it has not occurred to Ms Dusenbery that the reason why Alzheimer's disproportionately affects women is that all the poor men are dead of male dominant diseases before they get old enough.

I don't think Dusenbery is making any accusations relating to why some diseases disproportionately affect women. But given that some diseases do, for whatever reason, I think she is saying that some of those conditions are not given due attention by the medical profession.

So I was a lazy scientist doing bad medicine all my life studying RA, was I?

It feels to me like you are taking that too personally. From everything I read on S4ME, PR, etc, there seems to be a strong consensus that genuine gender bias exists within the medical establishment for those with ME, so maybe for other conditions also. I would be strongly opposed to any suggestion that all medical professionals are tarred with the same brush. I think everyone here in S4ME will have the greatest respect for your endeavours, and would not be agreeing with someone that suggested otherwise.

The 70kg standard for drug dosing is actually for women not men. The average weight of men is higher. In RA the average is 72kg, with 75% women.

She clearly got that wrong.

There is nothing like feminists whingeing like this to put men off researching female diseases for good.

That is a blanket comment I find disturbing. I have little time for hard-core feminism, the same as I have little time for hard-core anything else, but I don't know if Dusenbery's book is hard-core feminism for feminism's sake, or simply feminism in search of truth, which I do have time for.

But I've only read the amazon blurb, not the book.

 

[Jonathan Edwards]

On another of your points, do you have any idea why men on average die younger than women?

Old men are a waste of space. Old women can be very useful grannies. So the Darwinian forces keep women alive longer. The forces appear to act mostly through more rapid deterioration in arterial patency.

 

[Jonathan Edwards]

I don't think Dusenbery is making any accusations relating to why some diseases disproportionately affect women. But given that some diseases do, for whatever reason, I think she is saying that some of those conditions are not given due attention by the medical profession.

But Alzheimer's does NOT disproportionately affect women. It is simply that there are more old women around so more get it. Nothing disproportionate about it.

And I am not aware of Alzheimer's not getting attention. It is getting more attention than almost anything else. It has had less attention in the past because not many people got old enough to get it.

It feels to me like you are taking that too personally. From everything I read on S4ME, PR, etc, there seems to be a strong consensus that genuine gender bias exists within the medical establishment for those with ME, so maybe for other conditions also.

I am not sure if there is. There are a few who claim there is bias. But to be perfectly frank I have never had the impression of gender bias in medical practice or research. I do not think I am in any way the exception. Where is the evidence? How would it work? We see the patients who make appointments - whether they are men or women. I have never come across a researcher who has chosen to study a disease because it is macho. It seems complete nonsense to me.

The reason why ME is under-researched is that it is so hard to work out what on earth one would study - what question one would ask, what experiments one would do. Having thought about it for the last four years I still find it pretty hard to come up with something I think is likely to bear fruit. There are just no leads of the sort we have in most other conditions.

That is a blanket comment I find disturbing. I have little time for hard-core feminism, the same as I have little time for hard-core anything else, but I don't know if Dusenbery's book is hard-core feminism for feminism's sake, or simply feminism in search of truth, which I do have time for.

Judging by the blurb it is very il informed. And judging by the title it is sensationalist nonsense.

This is a completely different situation from the justified criticism of BPS work that is only putting off BPS people, if them. Unjustified, ill-informed criticism of researchers is going to help nobody and I would have sympathy with anyone being put off doing work on ME by this sort of hype.

 

[TiredSam]

Old men are a waste of space. Old women can be very useful grannies. So the Darwinian forces keep women alive longer.

Blimey is there anyone you are not prepared to make a sweeping statement about today? When I am an old man I shall have much wisdom to impart. That sounds like a very Richard Dawkinsish type statement, I didn't have you down as a fan of his.

 

[Jonathan Edwards]

Blimey is there anyone you are not prepared to make a sweeping statement about today? When I am an old man I shall have much wisdom to impart. That sounds like a very Richard Dawkinsish type statement, I didn't have you down as a fan of his.

Dawkins does not actually understand Darwin that well. I am not a fan of his (Dawkins that is).

 

[Barry]

Blimey is there anyone you are not prepared to make a sweeping statement about today? When I am an old man I shall have much wisdom to impart. That sounds like a very Richard Dawkinsish type statement, I didn't have you down as a fan of his.

I think it was simply an observation that evolutionary forces are not the least bit politically correct, but are what they are. Survival of the species is better benefited perhaps by women surviving to an older age than men.

 

[Trish]

Blimey is there anyone you are not prepared to make a sweeping statement about today? When I am an old man I shall have much wisdom to impart. That sounds like a very Richard Dawkinsish type statement, I didn't have you down as a fan of his.

I think there probably is an evolutionary advantage to women living longer in the sense that groups that had genetically strong grannies to help take care of the young children may have had more children surviving to pass on those healthy genes. I took Jonathan's comment in that sense.

I'm sure you'll be a very wise old man, @TiredSam! Personally, as a female elder, I don't think I have greater wisdom than my kids!

 

[Barry]

But Alzheimer's does NOT disproportionately affect women. It is simply that there are more old women around so more get it. Nothing disproportionate about it.

This illustrates a subtlety my education (or maybe just savvy) had not yet caught up with. I was misunderstanding "disproportionately affect" as meaning disproportionately afflicted by, with a valid reason being not living long enough to become afflicted.

 

[Inara]

We see the patients who make appointments - whether they are men or women.

I did make the experience that I was treated more respectfully and taken more seriously if my husband or even my father were present during an appointment with a doctor. My feeling is there is a certain amount of prejudice against women in some or many doctors. It's subtle.

I also made the experience of a certain amount of sexism during my PhD studies. This would increase if you wanted a Postdoc position or even a (junior) professorship. We knew we had to be geniuses to get a chance.

I cannot speak for other areas.

 

[TiredSam]

I think it was simply an observation that evolutionary forces are not the least bit politically correct, but are what they are.

The point I was making is that evolutionary forces are not what they are, there is vast room for speculation. This is especially evident in the field of evolutionary psychology (what else) when someone like Stephen Jay Gould gets going, and there have been some famous spoofs that got as far as publication about why cavemen prefer blondes etc. Dawkins is as prone to making such speculative claims as anyone else, and I have heard him going on about cave grannies before so was reminded of it.

"Old men are a waste of space" sounds like just such a speculative claim, but the opposite is just as likely to be true and someone could just as easily write a paper about it. As a old caveman I will still have a role in teaching the infants how to fish and telling them cautionary tales until they reach puberty, when they will undergo their rights of passage and join the real men on the hunt whilst I retire to the council of elders to get high on the local weed all day and occasionally adjudicate on property disputes.

evolutionary forces are not the least bit politically correct

Well that would be a good explanation for why there was no politically correct pressure to prevent cavemen from killing their annoying mother-in-laws when they started asking why their daughter didn't have as many children as the woman in the next cave. I shall be publishing a paper on this shortly in the Journal of Evolutionary Speculative Theory (JEST).

There are some areas of evolution where you can make up anything, and people do. As far as I know old people were a rarity until recently anyway, most people lived until about 30 and then died of their teeth, although I'm not an expert.

 

[Arnie Pye]

I did make the experience that I was treated more respectfully and taken more seriously if my husband or even my father were present during an appointment with a doctor. My feeling is there is a certain amount of prejudice against women in some or many doctors. It's subtle.

I have the same experience, and have taken the same route as you to overcome it. I take my husband with me to GP and hospital appointments as often as possible. For something serious or complicated I would cancel and make a new appointment if my husband wasn't available to come with me.

I'm not a wimp under normal circumstances, and I'm not stupid. But after 45 years of trying to get doctors to take me seriously, and failing consistently, I've given up the fight now.

There is one circumstance when I don't need to take my husband with me, and that is when the problem I'm discussing with the doctor is visible. It's better still if I don't have to remove any clothes for the problem to be seen.

 

[Valentijn]

I have the same experience, and have taken the same route as you to overcome it. I take my husband with me to GP and hospital appointments as often as possible. For something serious or complicated I would cancel and make a new appointment if my husband wasn't available to come with me.

Well, the good news is that the BPS school is attempting to overcome these inequities by treating generic male patients as hysterical by default as well. I wasn't particularly surprised when my (female) GP treated my hyperglycemic symptoms as imaginary, despite there being an obvious and documented cause. I was a bit more surprised when my neighbor complained that the same GP had similarly dismissed her husband's foot pain after an injury, from what turned out to be a fracture when he finally persuaded her to order an x-ray after 2 months.

I think there's a bigger problem with health care systems attempting to cut costs by teaching GPs to provide poor care, primarily based on the message that "these symptoms are probably meaningless". Personal gender or other biases certainly result in some inequity in women being treated even worse by some medical personnel, but the real problem goes deeper.

However, it can still be useful to argue against systematic poor care from the perspective of gender bias, since discrimination is more widely unacceptable than withholding basic care to save money (many people are in favor of anything which reduces spending or taxation), and applies more political pressure. So I don't particularly agree with health care mistreatment being a primarily or even substantially feminist issue, but I think it's a useful argument to make regardless.

 

[Jonathan Edwards]

As a old caveman I will still have a role in teaching the infants how to fish and telling them cautionary tales until they reach puberty, when they will undergo their rights of passage and join the real men on the hunt whilst I retire to the council of elders to get high on the local weed all day and occasionally adjudicate on property disputes.

Typical male chauvinist bias I would say. Why would the old men be better at cautionary tales than the old ladies? One man can teach six kids to fish so it does not matter if another five die off. The skills of motherhood are more one to one so grannies would be more useful. And since the women do all the real work like pounding corn for hours they are good value at any age. (Maybe I should work that up for the Bulletin of Speculative Hypothesising In Teleology.)