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

Given what we have is ME/CFS, that should probably be our chief focus.

Quite a lot of biological ME/CFS studies have only involved female patients; by contrast, not many that I recall only involved male subjects. I have heard few people complain about this.

 

Its for the same reason - one sex means you don't get data confused by hormonal differences. Its easier to get statistical significance in small groups if they are the same sex, otherwise there might be complications. With ME and CFS its easier to recruit women as well.

In terms of underlying biochemistry I don't have a great concern about this. Once we move to active treatments though then larger studies with women and men will be required, with subgroup analysis. To get there we have to figure out a lot of what is going wrong.

In 1978 when I was first learning biochemistry it was taken as a given that most studies were male dominated. I think that might have been the transition period where things were changing. Now single sex studies were not always all male, some were indeed all female, they were just less common. Really large clinical trials tended to be more balanced. I guess it depends on the details of the studies. I would expect to see a problem more often in pilot studies than large clinical trials.

 

Right.

It does concern me that we aren’t having enough people diagnosed with ME or large enough studies for hardly any of these to study subgroups. How can we know what differences might exist until this is checked?

Seems like large studies would have a better chance of finding a good diagnostic test, anyway.

 

I just posted this on another thread, but there seems to be a lot of different people on this thread so, given it took me little time to write, I thought I would post it here.

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Most countries in the world don't look at total budgets for each condition to try balance things out across conditions, largely because their budgets are too small, with large numbers of conditions getting no funding in any one year in most countries. Grants are assessed more on an individual basis rather than in attempt to balance out funding across hundreds or thousands of conditions.

I remain to be convinced that a lack of ME/CFS research funding has much to do with sexism at least in a way that can easily be changed.

I think factors that likely contribute to a lack of studies being funded by government type organisations include:

1a. No one medical speciality dealing with most or all patients. If a medical team are dealing with a lot of the same sort of patient, it would tend to focus minds on trying to improve matters.

1b. Also related to the previous point: a lack of large concentrations of patients attending particular clinics or being in particular wards in hospitals. Without this, it could be hard for clinicians or scientists to feel reassured they can get sufficient patients for research.

2 A lack of private money for research, meaning there are not that many applications for government funding:

Contributing factors to this include:

a. Not that many people appearing to die directly from the condition (meaning not many people leave money for it in their wills; families don't fund-raise much in memory of individuals, etc.)

b. People with the condition thinking they will get better eventually so not writing it into their wills

c. Family members thinking people with the condition will get better eventually so not focusing on fund-raising.

d. People with the condition being badly financially affected by the condition meaning they often have little or no money to donate to research

e. Many people with the condition thinking it is treatable so spending what money they have on treatments, etc.

f. People with the condition not having much spare energy to fund-raise

Other points:
3. It's an invisible illness. Generally there can be some scepticism about invisible illnesses.

4. No abnormalities tending to show up in ME/CFS on the normal commonly used tests, causing scepticism.

5. Relating to some of these points: patients themselves (and their families) stopping seeing themselves as suffering from the condition after a while.

I think claims of sexism may be stronger with regard to clinical care, rather than research funding: as I say, I think there could be lots of contributing factors relatively low levels of research funding.

There has only ever been one application for government funding in my country, for example. The biggest reason there is not much research in my country isn't due to a bias in what is funded, but in the number of applications that are being made. I think it's likely this is the case in a lot of countries.

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I think focusing on the sexism angle could distract from something more in the ME/CFS community could be trying to do: raising money privately for research.

 

I don’t see how the one approach precludes other approaches.

Nobody needs to participate in an approach they don’t prefer, but using a variety of approaches is generally a good thing.

In my opinion, best to do all the things: raise money privately, point out to government the areas where they are not meeting their directives and ideals, point out the areas where society is overall unjust, try to increase diagnosis, tackle bad methodology, and so forth.

Not any one person can necessarily do everything simultaneously, of course. And not everyone will want to. No problems.

But we can still support those taking different approaches from ourselves. It all needs doing.

 

I'm a gay man who has managed to survive in a rampantly heterosexist world. And in our rampantly heterosexist world, the field of medicine has been and continues to be riven by heterosexist bias. It's much better than it was 30-40 years ago--but discrimination in health care is still a major issue in the lives of LGBT folks. Given that we continue to live in a world full of gender bias, the field of medicine will inevitably reflect that. How that might play out specifically with ME, MUS or whatever condition is a separate issue, but it just strikes me as silly to deny that there has historically been and continues to be significant gender bias in medicine, if that's the argument being made here--just as it would be silly to deny that medicine is heterosexist.

 

Exactly.

There is more than one way to skin a cat.

 

In communication planning different approaches are fine, but multiple messaging themes at the same time ...not so much ...especially when the subject is complicated or you have a tough crowd to convince. Generally the more simple and easier to understand the message the better, otherwise people just get fed up and confused and you negatively impact your campaign.

I’m struggling to understand how taking on broader diverse topics or issues is going to make our message simple?

I’m also struggling to understand what we expect people to do with this rather amorphous message of institutional sexism that affects men by proxy and has something to do with hysteria in the 1970’s ?

It’s far better imo to call out the BPS lot for their inferior science rather than try and explain their bad behaviour using an evolutionary timeline, second guessing motivations of unamed people along the way. Let’s give ourselves a break and stick to the main messages and keep it simple and keep saying it over and over until the message sticks.

It’s an emotional thing but I’m not sure vented spleens for general unfairness in society make for good communication for our cause.

 

I think what they will do is this. They will say these arguments are pretty similar (which they are):

Hysteria is more common in women, so ME is hysteria.
Medicine is sexist, so the lack of treatment of ME has been sexist.

So the ME advocates are really just the same as the BPS advocates - using their prejudices to explain everything, without a scrap of evidence. So we can forget about ME advocates, and ME. No need to put some money in their donation box. Let's move along. That is the way Fiona Watt will think, the way Peter Gotzsche will think, the way Dr Munafó will think, the way David Tovey will think, the way the health minister will think, the way pretty much everyone that needs to be persuaded in order to make any progress will think. And they would have every reason to think that.

 

I’m afraid you are right.

As far as the general public are concerned I think their reaction will be similar and they will be either turned off by the lack of reasoning and “so what” or confused by what people are asking of them or even worse think that ME is about a fair deal for women. So fair deal = less emotional and everyone can calm down and just relax.

Either way it’s a spectacular way of shooting yourself in the foot

 

[Edit: Apologies -- the paper I found does not contain the data I thought it would, only the references to other papers which should.
See. https://www.s4me.info/threads/berke...rviews-maya-dusenbery.5887/page-4#post-108011]

My answer on @Jonathan Edwards ' comment on my question is still under construction, but I prepone a part of my mostly unwritten answer.

I think we all agree that sexism and racism unfortunately are part of our cultures and societies and their institutions. But when we discuss the influence of biases on institutions we should do this on a factual basis: In which specific way is this happening? When someone utters doubt about specific material on which a general reasoning is based, than we should answer on a factual basis. And to analyze how biases influence instiutions does not mean to accuse someone to be biased.

So, the topic interests me but I think to discuss this properly we would need to know on which material and sources Dusenbery based her reasoning.

I have other books and papers on top of my reading list though. Just had a short google trip that guided me to a paper whose title sounded as if it could give some hints to data relevant for the discussion here. One of the co-authors is Marianne Legato who seems to be a big name in the field of "gender medicine" and some of you probably know her publications and can judge them?

I have not read it and have no clue whether their concept makes any sense - but in case anyone finds this interesting I leave it here (open access) :

Biology of Sex Differences20167 (Suppl 1) :44
https://doi.org/10.1186/s13293-016-0093-7 Published: 14 October 2016
https://bsd.biomedcentral.com/articles/10.1186/s13293-016-0093-7

 

Women often seem to present with other symptoms when having heart issues. You would look for chest pain, but a woman might have stomach pain.

I only know anecdotes, where the man that presented with heart symptoms was taken very seriously, and a woman that presented with comparable symptoms was suggested to go to a psychosomatic clinic. She had to force the doctor to give her a referral to hospital, but not without remarking on the referral that her symptoms were psychosomatic. Fortunately, the (male) doctor in the hospital didn't agree, but told her she might have died 1 one week later.

 

The first argument is clearly fallacious and factually wrong, the second is just factually wrong. They are not equivalent. The weak point in the second is that medicine is sexist, when a more justifiable position would be that sexism exists within medical practice and research. This makes no judgement about how common it is, nor how to identify it.

I am not sure sexism in ME is a core problem. I think its more that sexism sometimes provides yet another excuse to ignore patients. Its an appeal for support to others in some cases. We are in the problematic fifth of all patients, and sometimes called heartsink patients. Heartsink is not a patient problem, its a doctor problem, though patients can easily exacerbate things. Frequent diagnosis and use of depression is also often an excuse to avoid further treatment. Doctors do not always have answers, diseases do not always have tests or cures, and both the public and the medical profession need to be open about that. That is why we fund science, to find the answers, tests and cures.

Hysteria is an unproven diagnostic entity. MUS is unproven, and so are its variants. On the face of it saying something is MUS is fine, its unexplained. Its any attempt to go from saying its unexplained to saying its explained, without evidence, is extremely biased thinking, its fallacious. You might say its hypothetically possible that there might be a psychogenic cause, but this is pure hypothesis. Treating someone based on unproven hypotheses is ... ?

Bias does not have to be just sexism, or racism, or any of the other -isms. I think many specific incidents of -isms are an attempt to appeal to popular culture and the specific reasons might well be -ism related, or something else. It often comes down to uncertainty, power, fear, greed or other potentially negative human emotions or drives. It can even be caused by well meaning over-confidence. That is not to say the -isms do not exist, its to say that they are not always the primary issue, but the most obvious one.


Let me give my point of view a few socially oriented quotes as well, from one of my favourite figures in history, Martin Luther King Junior:


https://www.fearlessmotivation.com/2018/01/14/martin-luther-king-quotes/

"Of all the forms of inequality, injustice in health care is the most shocking and inhumane."


https://www.brainyquote.com/authors/martin_luther_king_jr

"Injustice anywhere is a threat to justice everywhere.'


These issues keep arising, and we need to keep dealing with them, in every generation. Alas social issues are not always easily discernible for everyone, and are often so mired that they are obfuscated by other things. The ME community needs to have at least some ideas on what is happening with regard to -isms and ME, as well as other issues. Debate is not out of place in my opinion. We do need more facts in the debate though.

For example, I think many of us have experienced health care and social injustice, and read many statements along those lines. Right now I am thinking about Bob, who for newcomers was a great advocate for ME who died earlier this year and faced medical and social injustice.

Let me add some additional comments specifically on -ism claims, I am aware of a case of a personal friend who was told she was just getting old. Another was told to contact a spiritual medium and get pregnant. These are both deplorable, right up there with a doctor suggesting they should treat me like an old horse (that is put me down). They do not however tell us much about how common these things are, or even if they are the primary problem. I suspect they more often occur as an excuse for poor treatment and bad advice.

I have not read the book in question, so I cannot make specific comments for or against specific issues, this is just my own opinion.

 

It might have a lot to do with commercial interests. Sexism is just a useful tool to protect these interests. Shorter's website says he offers "CONSULTING IN LITIGATION AND CORPORATE PROBLEM-SOLVING."

Per Fink was the replacement for White at the Swiss Re conference.

 

I think that, historically, mysogyny played a role in trivialising ME, but whether it is relevant nowadays is another question. There are many biases against us each of which seem to be used wherever it is most useful to the BPSers.

They have succeeded in aligning us with climate change deniers, antivaxxers, animal rights extremists and muslim terrorists. They have succeeded in making us look like lazy skivers and then opened that out to the entire disabled and sick population.

The continual emphasis on it being a "real" disease and not all in the mind has the effect of reminding people that it is not a disease like MS or RA.

The men I have known with ME have had things worse than me as a woman. Paradoxically, the little helpless woman myth can be an advantage. One friend spoke of his shame when removal men kept looking at him while his 5 foot wife lugged boxes about and he sat on a chair. I stayed at home with the kids as far as the wider world was concerned so didn't get looked down on as lazy in the same way.

The best thing for us to do is keep repeating how bad the evidence is for GET and CBT. At this time, it is bad science that is working against our interests and pushing that is most likely to get us someplace.

 

Apologies -- the paper I found does not contain the data I thought it would, only the references to other papers which should:

Biology of Sex Differences20167 (Suppl 1) :44
https://doi.org/10.1186/s13293-016-0093-7 Published: 14 October 2016
https://bsd.biomedcentral.com/articles/10.1186/s13293-016-0093-7[

@Jonathan Edwards
@dave30th

 

Not sure whether this is reference to me or not, but just to reassure, I find it difficult to forget what it’s like to be the subject of discrimination and as mentioned in my previous posts on the matter I am pro-women’s rights and have suffered discrimination due to my disability both for my ME and for my other condition.

I am talking about effective communication and advocacy for ME from the perspective of someone who has devised national communication campaigns professionally.

Just to clarify

 

No need for sorry

I’m losing track of what thread I’m on