The difficulty of describing ME/CFS symptoms and experience

[southwestforests]

Just came across this via a Tumblr post by an Irish fellow who some years ago acquired ME/CFS as a teen.
First, his post which has link to a page which has link to the article which caught my attention,

https://myalgicencephalomyelitiscfstom.tumblr.com%2Fpost%2F788977451622711296

And now the article,



https://www.thereforme.uk/p/the-hermeneutical-injustice-of-me

When words fail

​

The philosopher Miranda Fricker writes about injustices that arise because of the ways in which we acquire knowledge from other people – such as the physio trying to acquire knowledge of my medical history. She breaks this down into two parts.

The first is testimonial injustice, when someone’s testimony is not believed. This is a huge issue with ME and deserves considerable attention. It was probably part of the picture that day in the physio’s office; maybe with my stumbling words, I just didn’t seem credible.

But that definitely wasn’t the whole story. Part of the problem was that the confusion was actually happening in my own head, as I struggled to explain symptoms that had dominated years of my life. It was more complicated than just not being believed.

Fricker calls this second issue hermeneutical injustice – when someone is unable to understand or express an important aspect of their own experience because there is a gap in the shared tools of social interpretation. More simply, it means lacking the concepts to make sense of your own reality.

 

[Rufous McKinney]

Interesting post, I wandered all the way back to the original article, which features: why diagnose a female when you can declare Anxiety and Hysteria, instead?

It even includes a paragraph about Physicians diagnosing females with psychiatric disorders when they are literally NOT trained to identify correctly, such disorders. Its like practicing medicine WITHOUT A LICENSE.

And I've put up with the sexist BS for how many decades of my life now? Put up with is probably not an accurate term.

- I dealt with being sick, for my whole existence- it framed and defined all aspects of my childhood, teenage years, adult hood. I was just really lucky that I could function well enough, in between bouts of All This.

 

[southwestforests]

which features: why diagnose a female when you can declare Anxiety and Hysteria, instead?

And that goes way back, for instance,

MULTIPLE SCLEROSIS OR HYSTERIA?
Healy, William M.D.
The Journal of Nervous and Mental Disease 36(3): p 164-167, March 1909.
https://journals.lww.com/jonmd/citation/1909/03000/multiple_sclerosis_or_hysteria_.10.aspx

 

[Rufous McKinney]

The thing when half the world dismisses you because of what sex you are: rather than be gaslit, I just fought harder.

Speaking of which I need to pin down my own timeline because I think it was right after the worst pile of sexist BS was laid upon me in Graduate School in the Biological Sciences....that I got Mononucleosis Round IV, of the Impossible Illness. I got put on actual drugs by my doctor and told to rest for two weeks, so I stayed home and went on walks and local hikes daily. The prenidsone sucked, I made note that Their Pills are not effective.

 

[linusbert]

It even includes a paragraph about Physicians diagnosing females with psychiatric disorders when they are literally NOT trained to identify correctly, such disorders. Its like practicing medicine WITHOUT A LICENSE.

we really need to stop this female getting diagnosed more psychiatric disorders and sexist narrative, because it happend me the exact same way. its a general issue, everyone gets those psychiatric disorders , from non qualified personal. its like they are shooting those with darts around... see someone , shoot them out. its such a disgrace.

i tell you what happens me as a men in the 30-40s. i have a tendency to be treated as the ex-boyfriend, ex-husband or the lazy son playing world of warcraft in moms cellar - depending on the females age.
i immediately notice the different tone, the tone a doctor should not have with a patient. its like they are talking with a son. in the nursing home one of the female nurses was coming in yelling with me as if i was her son.. telling me i should get up and go work. this was a unreal scene.
where as male doctors do not talk like this, they just a narcisstic and arrogant and dart those psych diagnosis around like its a game in office, who gets the most points. just completely irresponsable.
almost all loud discussions i had i had with female doctors or nurses.

the crazies thing happend to me, was my girlfriends psych. doctor diagnosing me remotely , because i was lying disabled at home, with narcissistic personality disorder, without having me seen, spoken to me, seen any diagnosis or medical paper of mine.. just because it fit here bad image of men and personal experiences.
her idea was me faking my disease so i can get attention from my girlfriend, which eventually stresses her out.

its a structural problem for everyone.
i am 100% sure, that 100% of all members in this forum who are cfs patients, no matter what gender or non-binary even, did experience this the same exact way.

EDIT:
actually there should be a reporting or talking platform for patient abuse, where everyone posts their stories in regards of that. there is non i know off, because those hospital lawyers send those platforms letters before you hit the save button. we are not allowed to share bad experiences. really sad.

 

[southwestforests]

in the nursing home one of the female nurses was coming in yelling with me as if i was her son.. telling me i should get up and go work.

That is so deep in to the realm of unprofessional that I can't come up with a simile to use.

 

[linusbert]

That is so deep in to the realm of unprofessional that I can't come up with a simile to use.

maybe its german thing. i dont know, it happens me everywhere. maybe its just a me thing. could be my looks? maybe my often weak voice? i dont know.
i also must say, for that example with that nurse, she was speaking broken german, i could have misunderstood. she had a habbit of speaking questions , with a exclamation mark.
i yelled back to her so loud, i actually felt bad afterwards. physical and psychological. not a good moment of mine either, but those where the days when i didnt walk with the lord.
actually now thinking about this, i should have apologized for this.

 

[southwestforests]

maybe its just a me thing.

It's bigger than that; at a minimum it is a you and me thing, and I can find anecdotes across a few decades supporting that it goes further.
I was married from 2005 to 2011 to a woman I'd known for the previous 9 years who by the time we got married had a pair of 20-something adult children, one male one female. There was, oh, let's say, more than twice, that I felt it warranted to say something along the lines of, "Umm, excuse me, but are you talking to me the same way you talked to your children?"

 

[Rufous McKinney]

we really need to stop this female getting diagnosed more psychiatric disorders and sexist narrative, because it happend me the exact same way.

Sadly, I believe you, no doubt. Its just I can only describe My Side of the Living experiment.

There is no shortage of opportunities to run into this crap being dished out from both sides. In many arenas.

i have a tendency to be treated as the ex-boyfriend, ex-husband or the lazy son playing world of warcraft in moms cellar -

I suspect that is becoming a new (ish) problem Doctors got wind of so they can enjoy using that to dismiss complaints from males during the Ten Minute Consultations.....they heard about the guy in the back bedroom playing war games (and yes, we have members playing war games or games whatever these games are.

 

[linusbert]

Sadly, I believe you, no doubt. Its just I can only describe My Side of the Living experiment.

There is no shortage of opportunities to run into this crap being dished out from both sides. In many arenas.

i believe you have gone through much more of this bad crap than i did, i mean i am only in it for 9 years. and i am so disillusioned already i do not want to go to any clinics / doctors anymore.
also i from my experience myself got prejudice, towards female doctors and nurses. probably because most of nurses are female. from those i fear the unprofessional momma treatment.
from the male docs i fear the professional egomaniac treatment.

though i had a few occassions where the momma treatment was positive, because they actually had empathy and tried to protect and make good tings for me. this happens as well. but most nurses somehow have a negative bitter bias towards patients or me , i feel.

but overall, male females, both are not listening, both are narcissistic, all create a own narrative of my patient-ness. if they act it out as momma or as mr. hide, does not really matter.

I suspect that is becoming a new (ish) problem Doctors got wind of so they can enjoy using that to dismiss complaints from males during the Ten Minute Consultations.....they heard about the guy in the back bedroom playing war games (and yes, we have members playing war games or games whatever these games are.

maybe after years of giving the girls the psych treatment, they realized that would be sexist, so the medical profession emancipated and now came up with something for guys too! ( i say this have jokingly, but only half)

 

[Rufous McKinney]

i believe you have gone through much more

I"ve hung in there through various decades worth of this stuff. I probably do have more merit badges than you do.

But all of us can be trapped in cultural baggage.

i fear the unprofessional momma treatment.
from the male docs i fear the professional egomaniac treatment.

that was funny, although its not a laughing matter

 

[linusbert]

that was funny, although its not a laughing matter

actually, if this bad stuff brought a smile upon someones face, it almost was worth it...i mean at least something good came out of it.
so lets have the little laugh together.

funny thing is, i actually did this all the time with my girlfriend. we even composed songs out of the habbits of our doctors as well as running jokes and absurd stories.
for example one doctor was loving pantoprazol the stomach acid reducing drug. he actually was lung doctor, but he just loved it. he was having one box in his drawer of his work desk in the clinic. i feel he prescribed it with everything for everything, like mcdonalds junior bag always having a little present.
we invented funny stories how one doctor with his weird behaviours was engaging the others, like the panto doc selling panto in the dark alleys of the university hospital to the other weird doc, opening up his white coat , looking around, and asking 'need some panto stuff'.
sounds silly but we laughed hard about this.

 

[Artemisia]

female-dominated illness get less research than male dominated illnesses.
women have been told their health problems are hysteria since ancient Greece.
women with traumatic childhoods are told they're borderline and men are diagnosed with CPTSD.
women got far more lobotomies than men.
erectile dysfunction gets more funding on many orders of magnitude than catastrophic female illnesses.\

up until recently, it was routine to conduct all medical research on men ONLY.
yes, i repeat, it was status quo for only men to be researched for drug trials and other medical research.
it took a female legislator in the US to even begin to change that in the 90s or 2000s.

but yes, let's go on pretending men and women have the exact same challenges.

welcome to how women have been treated all along, guys.

 

[southwestforests]

and yes, we have members playing war games

Huh? Wargames? What are these 'wargames'? Never heard of such a thing.

Oh, by the way, my male ego wants me to say the palm tree is scratchbuilt; a core of bendy wire which came in a roll, base wires spread then glued to an old CD, maybe from AOL; leaves/fronds, whichever they are properly called, were cut from paper painted with acrylics and then glued to branch wires; trunk got wrapped with brown twine then painted with mix of artist's acrylic matte medium and a warm tannish-grey craft acrylic hue.
The red planet hills were carved from slavaged packing styrofoam then painted with latex housepaint and got coated with sand while paint was wet, then painted again to seal in the sand.

 

[linusbert]

female-dominated illness get less research than male dominated illnesses.
women have been told their health problems are hysteria since ancient Greece.
women with traumatic childhoods are told they're borderline and men are diagnosed with CPTSD.
women got far more lobotomies than men.
erectile dysfunction gets more funding on many orders of magnitude than catastrophic female illnesses.\

up until recently, it was normal to conduct all medical research on men ONLY.
yes, i repeat, it was normal for only men to be researched for drug trials and other medical research.
it took a female legislator in the US to even change that.

but yes, let's go on pretending men and women have the exact same challenges.

welcome to how women have been treated all along, guys.

most of those are true, but whats the point of cherry picking a list of gender specific wrong doings in history?
i can make a list for every gender, every age group, ethnicity etc. how does this help? i do not understand.

i let ai construct a list with equivalent wrong doings for men in the same timeframe:

Spoiler

1. "Female-dominated illnesses get less research than male-dominated illnesses."​

Counterpoint:
Male-prevalent or male-specific health issues also receive insufficient research or attention.

• Prostate cancer receives significantly less research funding per death than breast cancer, despite similar incidence and mortality rates.
• Male suicide, especially among middle-aged men, is a leading cause of death in many countries but remains under-addressed in public health initiatives.
• Male infertility is often neglected or downplayed in reproductive research.
• Testicular cancer receives less funding and awareness than similarly severe female cancers.
• Autism in boys is more frequently diagnosed, but research has often failed to adequately explore how it manifests in males vs. females, leading to blind spots in male presentations as well.

2. "Women have been told their health problems are hysteria since ancient Greece."​

Counterpoint:
Men's emotional or psychological suffering has been dismissed as weakness, failure, or moral deficiency.

• Male pain has historically been delegitimized through cultural expectations of stoicism and emotional suppression.
• Soldiers and veterans experiencing trauma were labeled as "cowards" or “weak”, with "shell shock" in WWI often treated with punishment rather than care.
• Men showing distress were pathologized as violent, unfit, or antisocial rather than treated with empathy.
• The lack of a socially acceptable framework for male emotional pain led to underreporting, self-medication, and chronic underdiagnosis.

3. "Women with traumatic childhoods are told they're borderline and men are diagnosed with CPTSD."​

Counterpoint:
Men with trauma histories are often misdiagnosed or dismissed as behavioral problems, criminals, or addicts.

• Male trauma survivors are more likely to receive diagnoses like antisocial personality disorder, substance use disorder, or conduct disorder instead of trauma-related conditions.
• CPTSD itself is a newer concept, not widely available in diagnosis until recently. The assumption that men get the “better” label ignores the stigma and criminalization they face instead.
• Boys with trauma histories are overrepresented in juvenile justice systems, where treatment is minimal and punishment is primary.

4. "Women got far more lobotomies than men."​

Counterpoint:
Men were more frequently institutionalized for behavioral nonconformity, and subjected to other experimental or coercive treatments.

• While women received more lobotomies, men were disproportionately subjected to forced institutionalization, ECT, drug experimentation, and physical punishment in psychiatric wards, especially for aggressive behavior or military trauma.
• Male veterans with postwar trauma were often abandoned, imprisoned, or medicated involuntarily without regard for long-term impact.
• Lobotomies were used more on women in part due to misogynistic beliefs, but men were more often pushed into prisons instead of treatment.

5. "Up until recently, it was normal to conduct all medical research on men ONLY."​

Counterpoint:
Male inclusion in research was often driven by perceived disposability and not concern for male health outcomes.

• Men were routinely used as test subjects in dangerous drug, radiation, and chemical exposure trials, including in the military, prisons, and industrial research, often without consent or safeguards.
• Vietnam-era soldiers were subjected to experimental PTSD and psychotropic drug testing without proper follow-up or ethical review.
• Even though men were “default” subjects, this did not result in specific or beneficial outcomes for male health, nor did it reflect a genuine effort to optimize treatment for them.
• Male-specific side effects were often ignored in the rush to generalize results.

so you wanna be judge now, weigh those sufferings against each other and declare a winner for suffering in historic wrong doing? i dont wanna be.

 

[southwestforests]

up until recently, it was normal to conduct all medical research on men ONLY.
yes, i repeat, it was normal for only men to be researched for drug trials and other medical research.
it took a female legislator in the US to even change that.

It gets written about, even recently, which leads to the question of, So, after it gets written about, what gets DONE about it?

Why we know so little about women’s health
Before 1993, women were rarely included in clinical trials. Today, the medical field still doesn’t know how well many drugs and devices work for women.
Shot of a young woman browsing the shelves of a pharmacy
By Bridget Balch, Staff Writer
March 26, 2024

https://www.aamc.org/news/why-we-know-so-little-about-women-s-health

Mom was a nutritionist in the 1960s and early 1970s, then got her masters degree and qualified as a dietitian in the 1980s, and I long remember her saying that from basic nutrition on up, women's and men's bodies and systems did different things, responded differently.
Sadly, I also remember a time from my childhood where at an appointment for me, the male doctor responded to something she said about my health with something along the lines of, "You can't know that, you are just a mother."
As a sick child I didn't have the power to contest the doctor.

 

[Artemisia]

people who care about human rights need to talk to older women (yes women are human) about what life used to be like for them. it's pretty appalling what was standard not that long ago, and how little has changed in practice since then, and how easy it is to lose the ground that was gained.

 

[Artemisia]

most of those are true, but whats the point of cherry picking a list of gender specific wrong doings in history?
i can make a list for every gender, every age group, ethnicity etc. how does this help? i do not understand.

i let ai construct a list with equivalent wrong doings for men in the same timeframe:

Spoiler

1. "Female-dominated illnesses get less research than male-dominated illnesses."​

Counterpoint:
Male-prevalent or male-specific health issues also receive insufficient research or attention.

• Prostate cancer receives significantly less research funding per death than breast cancer, despite similar incidence and mortality rates.
• Male suicide, especially among middle-aged men, is a leading cause of death in many countries but remains under-addressed in public health initiatives.
• Male infertility is often neglected or downplayed in reproductive research.
• Testicular cancer receives less funding and awareness than similarly severe female cancers.
• Autism in boys is more frequently diagnosed, but research has often failed to adequately explore how it manifests in males vs. females, leading to blind spots in male presentations as well.

2. "Women have been told their health problems are hysteria since ancient Greece."​

Counterpoint:
Men's emotional or psychological suffering has been dismissed as weakness, failure, or moral deficiency.

• Male pain has historically been delegitimized through cultural expectations of stoicism and emotional suppression.
• Soldiers and veterans experiencing trauma were labeled as "cowards" or “weak”, with "shell shock" in WWI often treated with punishment rather than care.
• Men showing distress were pathologized as violent, unfit, or antisocial rather than treated with empathy.
• The lack of a socially acceptable framework for male emotional pain led to underreporting, self-medication, and chronic underdiagnosis.

3. "Women with traumatic childhoods are told they're borderline and men are diagnosed with CPTSD."​

Counterpoint:
Men with trauma histories are often misdiagnosed or dismissed as behavioral problems, criminals, or addicts.

• Male trauma survivors are more likely to receive diagnoses like antisocial personality disorder, substance use disorder, or conduct disorder instead of trauma-related conditions.
• CPTSD itself is a newer concept, not widely available in diagnosis until recently. The assumption that men get the “better” label ignores the stigma and criminalization they face instead.
• Boys with trauma histories are overrepresented in juvenile justice systems, where treatment is minimal and punishment is primary.

4. "Women got far more lobotomies than men."​

Counterpoint:
Men were more frequently institutionalized for behavioral nonconformity, and subjected to other experimental or coercive treatments.

• While women received more lobotomies, men were disproportionately subjected to forced institutionalization, ECT, drug experimentation, and physical punishment in psychiatric wards, especially for aggressive behavior or military trauma.
• Male veterans with postwar trauma were often abandoned, imprisoned, or medicated involuntarily without regard for long-term impact.
• Lobotomies were used more on women in part due to misogynistic beliefs, but men were more often pushed into prisons instead of treatment.

5. "Up until recently, it was normal to conduct all medical research on men ONLY."​

Counterpoint:
Male inclusion in research was often driven by perceived disposability and not concern for male health outcomes.

• Men were routinely used as test subjects in dangerous drug, radiation, and chemical exposure trials, including in the military, prisons, and industrial research, often without consent or safeguards.
• Vietnam-era soldiers were subjected to experimental PTSD and psychotropic drug testing without proper follow-up or ethical review.
• Even though men were “default” subjects, this did not result in specific or beneficial outcomes for male health, nor did it reflect a genuine effort to optimize treatment for them.
• Male-specific side effects were often ignored in the rush to generalize results.

so you wanna be judge now, weigh those sufferings against each other and declare a winner for suffering in historic wrong doing? i dont wanna be.

oh boy! r/redpillmen talking points but in AI form!

we are talking about medical misogyny, but you asked AI to compile a list of everything done wrong to men, ever. (notice all those things are what privileged men do to underprivileged men. women have nothing to do with it)

just once I would like a jordan peterson fan to address the fact that more women ATTEMPT suicide than men, but since we are 1) more concerned with the person finding the dead body and 2) less likely to own firearms, we often use less violent methods that are more likely to fail. Since more women attempt it, this tired old suicide statistic trotted out by MRA types doesn't prove the point you think it does.

Since males have always held the vast majority of political and financial power and resources on the planet, shouldn't it be on you fellas to change those things the bot coughed up? example: don't like men being cannon fodder? Stop creating wars. Or are you going to next say that women are the majority of heads of state who are waging war and have throughout history? we all know who created those problems.

 

[Rufous McKinney]

The red planet hills

That is a very cool Red Planet, there. And I love the palm tree.

I can get behind what you've done there. I'd enjoy having that red planet world and playing around with the little soldiers.

I saw a real place on Planet earth once which looked much like your Red Planet. It's on a remote island in Hawaii. You feel like you are on another planet (and no palm tree grows in that area, btw). Turns out it was some spot that had previously been UNDER the ocean for a very long time, was now 100s of feet above sea level.

 

[Rufous McKinney]

the existence of one list of grievances and unfairness, does not negate the existence of the other list. Both can be true and often are.

_I recall the many many many years ago, that nobody would help me with horrific nausea. Since I"m pregnant, my chinese herbalist who can fix everything will not TOUCH ME. I wanted to scream, frankly this was so frustrating.

I recently learned that severe morning sick ness was viewed for many years as yet another female Hysteria. Psychosomatic. Interesting, that you can just about die from psychosomatic.