The difficulty of describing ME/CFS symptoms and experience

[Rufous McKinney]

We can sort of see how women were not used as study victims in the past, given they are in theory "reproductive"...as if that is all women do. Far easier to just access a bunch of prisoners, or military people, or Henriette Lax-types.

 

[linusbert]

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

i do not even know what you are talking about or mean with this.
but i am tired of this one sided cherry picked genital based offtopic discussions serving no one in this forum.
everyone suffered throughout history, you can make lists for any domestic group.
usually for one wrongdoing there is not the same but another equally painful for the other group.
you wanna judge over all humans that your domestic is the main sufferer throughout history.
fine be the judge, i will not be.

when i ask my grandmother what grandpa did when she was taking care of my father and my aunt at home, she tells me that grandpa was working in the mines not seeing daylight whole day, not breathing fresh air and being subject to serious lung damage through fine dust particles, common cause of death and serious illness at those times. glad my grandpa did switch jobs soon and did not suffer this fate.
when i asked my grandgrandmother what grandgrandfather did, she said he died on eastern front in ww2, still mourning decades later.

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.

absolutely right.
the problem arises when someone claims his list is more important than the sufferings of others.

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.

one of my psych docs told me that if you believe it you can die due to freezing to death at room temperatures.
for her everything was possible with belief.

We can sort of see how women were not used as study victims in the past, given they are in theory "reproductive"...as if that is all women do. Far easier to just access a bunch of prisoners, or military people, or Henriette Lax-types.

thats right, women had value to society, men were cannon fodder.
so the choice was cannonfodder or breading machine... which one is better , which one is worse? why does it matter?

 

[Artemisia]

but i am tired of this one sided cherry picked genital based offtopic discussions serving no one in this forum.

right, because this topic comes up SO MUCH here.
a couple posts pointing out medical misogyny on a forum for a female-dominated illness where medical misogyny is absolutely a factor is just unbearable, isn't it?

 

[linusbert]

right, because this topic comes up SO MUCH here. gee, a couple posts pointing out medical misogyny on a forum for a female-dominated illness where medical misogyny is absolutely a factor is just unbearable! /s

can somebody second this, if yes i will delete my account asap and create a male phoenix rising.

 

[Artemisia]

can somebody second this, if yes i will delete my account asap and create a male phoenix rising.

does this mean you will delete your account and create a male forum if someone likes my comment?
seems a bit extreme.

 

[linusbert]

make a poll, if majority shares your opinion i will do.

 

[Artemisia]

make a poll, if majority shares your opinion i will do.

i'll pass lol but be my guest.
remember, this is the statement that was so offensive:

a couple posts pointing out medical misogyny on a forum for a female-dominated illness where medical misogyny is absolutely a factor is just unbearable, isn't it.

 

[Rufous McKinney]

my grandgrandmother what grandgrandfather did,

We typically say Great Grandparent, but I liked this version, also!

My Grandmother, she was one of those remarkable types. She lost her own mother at six. She had an evil step mother who treated her abusively. Her first husband died of the famous flu. She had two kids and was PG. Evil Stepmother tried to abort the baby. She then tried to force to send them to the Orphanage.

My Grandmother ended up having eleven children. I never heard of a single one not surviving. How many years was she breast feeding babies? Something like 22 years. She was back working in the tobacco factories in Richmond, at the age of 60 and died at 69 of stomach cancer. Her husband, the police officer, he died at about fifty. The cancer from the tobacco factories, yet again.

---the ME CFS experience is intense, and all of us have been traumatized by it to varying degrees. I personally do not really think we really need separate threads by genitalia.

How do we work through it? To get to a better place? By not talking about it? I hope not.

 

[Artemisia]

How do we work through it? To get to a better place? By not talking about it? I hope not.

Clearly, simply mentioning medical misogyny is unacceptable to some members here.

You'd think that everyone suffering from ME would want to examine all the factors at play in marginalizing and not researching this. But I guess only so far as it doesn't trigger certain sensibilities about "everything is the same for everyone / misogyny does not exist"

It's actually thought terminating the way these discussions go. No one talks about the fact that this affects more women either in causal factors or in marginalization. If you do, people lose it. Does anyone care that these are actually important factors that could point to improvements for both female AND male sufferers?

Well, even if they care, too bad. Discussion of this one thing is not allowed!

 

[linusbert]

Clearly, simply mentioning medical misogyny is unacceptable to several members here.

your list is fine. i have no problem with that list. i acknowledge the truth to the arguments in most of it.
it just makes no sense, saying group A suffered and not also saying group B also suffered. therefore giving group A a bigger importance and belittling the other group.

because for this disease 100% of men and women are treated wrong, there is no cure for anyone. so there is no cure applied more often to men than to women.
if reality would be, that there is a cure, and men do get it 60% and women only 40% i will say this is f* up and needs to change.
but its not.
(and in that example, the problem is not that men are getting the cure more often, but that both are not getting it 100%!)

so why bring gender disparity up in a forum for a disease where there is non. because medical community is treating everyone equally bad and wrong?
so if a women would instead of CFS diagnosis, get a histeria diagnosis, and then in the process will be treated with GET (which is often used in depression) , how is it different than if a men does get a different diagnosis like psychosomatic-something or PTSD but also GET prescribed? both will crash and be worse of.

its like in a sinking boat with 2 groups, one is claiming one is sinking more than the other.
and i get this feeling every now and then, that somebody is claiming his group is more sinking then the other.
and it actually from the perspective where one is sitting , it indeed might look like that group is sinking harder, but in reality, for this particular ship, both are drowning.

 

[linusbert]

We typically say Great Grandparent, but I liked this version, also!

My Grandmother, she was one of those remarkable types. She lost her own mother at six. She had an evil step mother who treated her abusively. Her first husband died of the famous flu. She had two kids and was PG. Evil Stepmother tried to abort the baby. She then tried to force to send them to the Orphanage.

My Grandmother ended up having eleven children. I never heard of a single one not surviving. How many years was she breast feeding babies? Something like 22 years. She was back working in the tobacco factories in Richmond, at the age of 60 and died at 69 of stomach cancer. Her husband, the police officer, he died at about fifty. The cancer from the tobacco factories, yet again.

spanish flu?
thats also a very sad story what your grandmother had to experience :'(.
both dying to cancer for tobacco is really disgusting. oh how do i hate zigarettes & co.
also had one grandpa die to that. not for working , but by overconsuming it.

---the ME CFS experience is intense, and all of us have been traumatized by it to varying degrees. I personally do not really think we really need separate threads by genitalia.

i actually warmed up to the idea. we could make house parties, inviting folks from the other forum over. and then when politics or police come up sneak home in peace.

but if there are so many interested in gender disparity for cfs treatment, i mean it comes up every few weeks, so there seams to be a interest for it.
so it might indeed be a idea to create a separate subforum for gender specific issues. mods could move threads into these and everyone can cry out their hearts desire. kinda like how i use my blog to tell about my coming to faith story.

How do we work through it? To get to a better place? By not talking about it? I hope not.

i did say everything i feel there is to say, i will not say any more.

 

[hapl808]

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.

This.

Using some of my limited energy against my better judgment.

Some groups are more poorly treated - and that's extremely important for public policy, research funding, and hope for systemic change.

However, for people who are individually suffering - it's really not helpful to say, "Yes, as a white woman you may be suffering, but historically and just generally, it's FAR WORSE for a trans black woman." Even though that's likely true, it doesn't make someone's individual suffering any less valid or easier to take.

As a male, I have faced different challenges and certain aspects of life have likely been easier. However, does that change how awful my existence has become, or the number of decades I've watched as my life and dreams slipped away?

But while we shouldn't invalidate people's individual experiences, we also should be aware of systemic injustices that created these problems in the first place. The arrogance of doctors, the 'confidence' sold by Western medicine, the psychologizing of anything that was poorly understood, the misogynistic views - that go beyond just attacks on women, but also just generally 'being a man' and pushing through (which can be applied to any gender), etc.

With these types of diseases, everyone's story tends to be different, but also universally awful. The people who get support from doctors and loved ones tend to be the exceptions, not the rule.

 

[Artemisia]

so why bring gender disparity up in a forum for a disease where there is non. because medical community is treating everyone equally bad and wrong?

there is gender disparity. just because you have some personal anecdotes does not negate the data we have proving this. that's not up for debate. facts exist. you may think gender disparity is non-existent, but that view is just as wrong as the claim that ME is psychosomatic.

why bring it up? because this is a forum for ME/CFS and we often talk about why it's marginalized and what the causal factors are. medical misogyny and the fact that ME affects females more than males is absolutely relevant to both the etiology and the marginalization.

the fact that discussing medical misogyny is apparently triggering to some, doesn't change those facts.

edit - take the CDC calling the Lake Tahoe outbreak a bunch of middle aged hysterical women. Are you telling me this has absolutely no bearing on how this disease was treated (yes, for men too)?

 

[Artemisia]

As a male, I have faced different challenges and certain aspects of life have likely been easier. However, does that change how awful my existence has become, or the number of decades I've watched as my life and dreams slipped away?

No, it does not change it. Yes, absolutely, everyone with ME have been mistreated.

I know people will misinterpret me on that point. Yes, men have suffered! I agree. Yes, I know doctors have dismissed men with ME, too. I don't claim otherwise.

I'm saying the root of that suffering is--at least in part-- because you essentially have a woman's disease. Now you must deal with the repercussions of centuries of medical misogyny right alongside women. This is why I said, welcome to our world.

Women should be free to talk about this.

But while we shouldn't invalidate people's individual experiences, we also should be aware of systemic injustices that created these problems in the first place. The arrogance of doctors, the 'confidence' sold by Western medicine, the psychologizing of anything that was poorly understood, the misogynistic views - that go beyond just attacks on women, but also just generally 'being a man' and pushing through (which can be applied to any gender), etc.

agree, this is why it matters to bring up medical misogyny.

 

[linusbert]

Women should be free to talk about this without guys freaking out, frankly.

men do wish for this for millenia in reverse.
happy wife happy life does not come from nowhere :O)

Women should be free to talk about this without guys freaking out, frankly.\

you say things which one could just say in isolated context, you are right, but with cultural context there is a certain intellectual dishonesty comeing with this. because we know, that if i would make a thread with how men are treated worse in medical history than women (i do not even know the opposite word for mysogyny)
then we can imagine a certain backlash, wouldnt we?
because we all know, its not about a isolated concrete list of points of where women are treated worse at one time than men - which most including me could agree on, but a general insistence that women are in general treated worse than everyone else.
so even the topic of men being worse off in certain areas would be a insult , wouldnt it.


i asked this before, why not make a gender specific subforum here (not for just women, but including all gender specific subtopics so men and non-binary can use that too), maybe under "Treatment" or Community?

 

[Artemisia]

why not make a gender specific subforum here, maybe under "Treatment" or Community?

no, i think i'll write about it where i want. almost every time women venture into the internet at large they have to deal with everything from "women shouldn't be allowed to vote" to rape jokes. males can cope with a mention of medical misogyny here and there. or they can use the ignore function if naming misogyny is too upsetting.

intellectual dishonesty

that reminds me -- i hope you saw my edit about the CDC calling ME patients hysterical women. (this was when the US agency first named it CFS and refused to investigate)

 

[linusbert]

nah i think i'll write about it where i want. almost every time women venture into the internet at large they have to deal with everything from "women shouldn't be allowed to vote" to rape jokes. males can cope with a mention of medical misogyny here and there.

that reminds me -- i hope you saw my edit about the CDC calling ME patients hysterical women.

what me/cfs credibility does the CDC have that it matters?

nah i think i'll write about it where i want. almost every time women venture into the internet at large they have to deal with everything from "women shouldn't be allowed to vote" to rape jokes. males can cope with a mention of medical misogyny here and there.

so we have this useless discussions for eternity, because i am not shutting up either.

why not ask the moderators what they think about this, @Mary ? would that be a fair compromise? i made the suggestion to have a subforum for gender-specific topics , because those are a constant strife for useless argument.
Artemisias argument i do not see, because in a subforum these posts are as advocated on the main page as any other post too, so there is no "hidding" or lower level of visibility for these topics.
but folks who do not want to read them, can just put that subforum on ignore.

 

[kushami]

When describing symptoms, orthostatic intolerance and presyncope might be useful terms to use, although I realise that they only convey a small part of the whole experience of the illness. However, doctors are at least familiar with these terms.

Lately I have been thinking of mentioning executive dysfunction in regards to myself, although it is very bound up in particular diagnoses and I would suspect many doctors don't know that it can occur for all sorts of reasons in a range of illnesses and injuries.

At the start of my illness, 20 years ago, I kept saying that I felt as though I had low blood sugar. I wonder now whether this was counterproductive. It did get me some testing for blood sugar problems, including (eventually) for reactive hypoglycemia, and those were good tests to have, although they turned out normal. I wonder now whether it would have been better to say that I felt as though I was going to faint.

Of course, back in those days I had never heard of orthostatic intolerance, although I had experienced it occasionally and transiently, as most people have.

There's no point dwelling on it now, I suppose. I do think it is up to doctor's to ask good questions though, and tease out information about how people are feeling.

For instance, after reading online forums, I was surprised to find that many people use "dizziness" to describe feeling faint. Growing up in Australia, I only ever heard dizziness used in the sense of how you might feel after spinning around in the garden or going on a fun-fair ride. To me, dizziness means that there is some (unpleasant) sensation of spinning. (I don't know whether this is typical of Australian usage, or just of my household.)

I wonder how other languages describe these feelings, and how they divide them up.

 

[kushami]

Oh, I forgot that I did tell people that it felt like all the blood had drained out of my head, and objectively I would be quite pale in terms of an objective sign. Turns out I was right about that – I'm now diagnosed with cerebral hypoperfusion.

 

[Viala]

Ok I have not read the whole thread yet, but I will say that the fact that women are statistically more misdiagnosed IS one of the reasons why ME/CFS is still not researched enough. So, men also suffer because of medical misogyny.

Getting angry at facts and calling it 'narration' is exactly the same problem that got us here. It also tries to prevent women from talking about themselves, which has happened to women for decades, which again, is what got us here. There is no logic in calling it narration, it is shooting oneself in the foot. I have addressed this topic two times in this forum and I am glad that more people also talk about this.