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

Being a woman is also literally in the guidelines as a 'risk factor' for MUS.

 

I think this is an excellent point. And I also think that talking about gender bias medicine does not imply that men always get great treatment. The data and evidence that such gender bias has long existed and still exists is pretty convincing to me. Just the face that historically studies have generally been performed on men and then applied to women makes the point. Obviously that's not the only issue, and men can get treated awfully. There's also a hetero-bias in medicine--I have experienced that throughout my life as a gay man. That doesn't mean all heterosexuals are treated wonderfully and should not invalidate the fact that heterosexuals have also faced discrimination if they have complex illnesses.

 

It would seem bias is a natural human phenomenon compounded by social constructs - apparently requiring great conscious awareness (and practical tools / protocols in formal settings) to counter.

Ain't easy to make that kind of change on a systemic or institutional level.

 

I dont criticise the idea of gender being an issue in ME/CFS research because it hurts my feelings as a man (it’s rather insulting and patronising to suggest that’s the case by the way). I criticise it because I’ve thought about it carefully, looked at evidence and come to my own conclusion. You are entitled to disagree with my opinions of course but feeling ‘invalidated’ is not why I have them.

 

Is this actually the case, David (@dave30th). I have been in medicine for nearly fifty years and I have never come across any suggestion that. Studies have, as far as I know, always had a sex ration relevant to the condition in question, at least since the early seventies.

 

I agree with @arewenearlythereyet that the argument about sexism does not really add up. The fact that illnesses where there is nothing to find on tests and also there are no objective physical signs (like ME and chronic pain syndromes) are more common in women is just a fact, unless of course you think these are not real illnesses when women complain of them, which is the position being argued against anyway. The fact that we have no successful research into mechanisms and treatments is almost certainly just a reflection of the fact that there are no leads from tests signs to follow up. In fact there are some leads and they have been followed up and nothing has come of it.

 

The Royal Free epidemic was dismissed as being mass hysteria and it was explicitly said that "being a woman" was a risk factor for hysteria even decades later. I remember a phone in tv programme with Sittaford which was one of the worst examples of misogyny I ever heard. He took being a woman as synonymous with neurotic and was horrible to the women phoning in. Him and the presenter were also very cosy together against Anne McIntyre with a "pat the little lady on the head" attitude.

The editor of one of the big papers, I can't remember who, said on TV that ME was a disease of "middle aged women with psychosexual problems."

I can't remember all the things Stephen Strauss said to put women down but he was extremely misogynistic in his descriptions of the disease and in his dealing with patients.

Remember, CFS was in the women's health section of the NIH until very recently. When men got the disease, well it meant that they were even more neurotic acting like women!

This history has driven a lot of our problems. The fact that it was a women's disease proved it was hysteria so now when attitudes are more equal men are seen as getting hysteria just as often.

 

Er, that’s not what I was saying at all, nor was my post addressing you directly in the slightest.

 

Ditto

I’m not feeling hurt feelings about women’s rights advocacy. That really is not the reason I’m making my points. I also don’t agree with the point that there is discrimination by proxy...this seems an even more convoluted argument?

One thing that is worth mentioning is that when advocacy starts to fragment like this, the sum of the parts do not always result in a net gain...especially when the messages are different and so diverse

The reason for my points are to call out flawed logic and raise concern that advocacy efforts may become diluted and diminish clear communication when weak, convoluted and unsubstantiated/illogical arguments are used.

 

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!

It is important to use good arguments when trying to advance our cause, and frankly we don't really know why it's so neglected. I think the best explanation for the neglect is still a combination of ME/CFS being a difficult problem to solve combined with a narrative of "unhelpful illness beliefs" and "CBT/GET are effective".

 

I agree that the primary problem was that M.E. did not obey conventional signs and indices of disease. But it was no accident that the disease was stranded in the nowhere of the ORWH, which is a Potemkin village, run by the NIH, organized as a deliberately inadequate sop to the demand for more support and inquiry into women's health. This was deliberately done. It was perceived as a women's illness.


From Thirty Years of Disdain-Dimmock, Fairman (pp.44-45 of Synopsis version)

While the paltry research funding is the most visible issue, the placement of this disease in NIH’s Office of Research on Women’s Health (ORWH), outside of all the NIH institutes and centers, has probably been the most pivotal.

At NIH, the institutes and centers are the organizational units that drive NIH’s strategies and priorities. They are also the groups with money to fund research and the authority to make the final decisions on what gets funded. Naturally, those final funding decisions are made in alignment with the priorities of the individual institutes. CFS was originally placed in the National Institute of Allergy and Infectious Diseases (NIAID).

But in 1999, the disease was moved out of NIAID to the Office of the Director and then to ORWH, 436 where it has been exiled for the last fifteen years. Lacking a budget for this disease, ORWH has attempted to use the Trans-NIH ME/CFS Working Group437 to cobble together funds from the individual institutes to pursue research. The Trans-NIH ME/CFS Working Group appears to be the only disease-specific trans-NIH work group to not be headed by an institute.438 And no NIH institute has made this disease a priority.​

 

I agree with much of what you say Trish. However

In my experience female doctors can be just as bad, if not worse than some of the guys.

As you say -

But it's also true to say that in history women have upheld the stereotype /discrimination as much as men. Just because they're women doesn't mean they don't uphold the sexist status quo. One example today - the "surgeons" who carry out female genital mutilation are women, those who punished and abused women in the Catholic Magdelene Laundries - women.

It may be they feel they are protecting their own perceived special status above other women, although below that of the men. For whatever reason, women can be guilty of keeping other women " in their place".

 

I don't have the data at my finger-tips but I have in the past seen convincing arguments on this. The discussion is about historical gender bias going back 100 years or so, so the 70s is not really that long ago in that context.

 

Maybe but that seems to be a peculiarly US situation. If there had been something to go on ME would've been researched outside the US even if the NIH had strange practices. And it wasn't. I think that is because nobody could get a grip on it. That was certainly my feeling. I did not devote any of my thinking time to ME because I could not see where to start.

 

I'd like to see some facts on this. What sorts of 'studies performed on men' are people really talking about? Most medical research gathers data from ill people - anyone who is ill regardless of sex. Maybe in the 1920s only men were subject to experimental intervention, maybe like trying ut new drugs or vaccines, but that seems to me to be likely to be a sign of the general view that it as ethical to do nasty things to men but not to women. Surely women would have been grateful that they were not exposed to experiments if those could be done on men but still provide useful information about illnesses that affected women?

 

The seventies isn't that long ago and isnt it the case that often in medicine it takes a number of years for "new findings" to actually get through into practice.

Someone once said to me that doctors can be in their sixties or even upto eighty years old practising stuff they learnt forty to sixty years ago year ago from text books that where written thirty years before that.

From my experience neurologists are the laziest, least capable, obnoxious, self righteous doctors I've met so that might play a part in all of this too. Along with the fact that they are the most likely to dump people onto psychologists as "psychiatry and neurology are closely linked", whatever that means, and that psychiatry is often stuck in the dark ages.

Really I think they should stop using the term departments in psychiatry and just use the word Parish instead, with the most high ranking ones being known as Bishops.

 

I don't get the relevance of that. I was talking about research experiments. I do not remember as a student in 1968 learning about any experiments just done on men and some of the stuff we were taught was indeed thirty or forty years old then. We used to get taught about Starling's experiments in the 1890s.

 

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 :

 

Was there 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? People in the thread are discussing whether there is a historical and current bias towards women by dismissing their symptoms as hysterical etc.

I cant say either way as I only have my own experience as a male patient, but I can imagine a situation wherby its one load of bullshit for male patients and a different load as an explanation for women using the tacit belief of them being neurotic and weaker minded.

I don't know about the actual figures of women versus men ratio in studies. But isn't this an example of making assumptions of women rather than having validated something scientifically?

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