Community Munchausen's by Internet (Malingerers, Munchies, Spoonies, etc) - Feigning Illnesses for Attention

[std::string]

In that very edited video the other day she was off the vent the whole time she was filming which was probably a good half hour opening all those parcels and remained well perfused throughout with no gasping or stridor or any noticble breathing dificulty but the PMV kept flying off and she was hacking and coughing and choking the whole time she was trying to speak.
I think she just can't do it, is a Hot mess express trying and has given up rather than persevere because gross hacking and secretions flying everywhere is not fitting with the dolly aesthetic.

If she can get off it without desatting my guess would be severe obstructive sleep apnea. Only thing I can think of where a trach is indicated where she wouldn't cop to having it because OSA's mostly associated with old fat men and that's not gonna fit her aesthetic.

 

[A tree]

If she can get off it without desatting my guess would be severe obstructive sleep apnea. Only thing I can think of where a trach is indicated where she wouldn't cop to having it because OSA's mostly associated with old fat men and that's not gonna fit her aesthetic.

Maybe...she doesn't want to admit to having the uncool respiratory disease and that would potentially explain why she had that old CPAP machine that never actually seemed to be switched on in the daytime. You could never hear it running in her videos she just had the hose on her face like an accessory.
I mean nothing in Rose world makes sense but it's a theory.

 

[A tree]

Sorry for a double post but we've been down and nobody's posted in the meantime. I'll do a proper Bee update in the new year but while you wait enjoy this Festive Fever Dream.

Bee has decided after her choreography fail that she now wants to be a voice actor so I present A Winter Fairy Tale In Far Too Many Fucking Parts featuring the two voices Bee can do: Texan (?) and Scottish dinner lady.

Apologies if quality is potate. Bee's editing software made it piss poor already and getting videos off a private account means screen recording and shite quality.

Blooper reel

 

[large_farva]

My pet munchie Dontpetmeimworking is back with pill porn, an ER visit selfie and excitement over the possibility of another port.

I was just thinking about her when I saw a tiktok where a nurse was talking about the phenomenon where perfectly able bodied people will suddenly not want to do anything for themselves when they come to the hospital. I was reminded of the time she went to the ER during peak covid, feigned a seizure and peed her pants to try and prove it was a for real seizure, then she complained they left her to sit in her mess for hours. Seemed to me like she could have gotten herself cleaned up.

 

[TheBigZee]

CNN Features Mother of a munchy sharing a bunch of insane munchausen's stories.

Ehlers-Danlos syndrome affects millions. Why isn't the medical profes…

archived 24 Dec 2022 08:38:09 UTC

archive.ph

 

[HerbertWest]

CNN Features Mother of a munchy sharing a bunch of insane munchausen's stories.

Ehlers-Danlos syndrome affects millions. Why isn't the medical profes…

archived 24 Dec 2022 08:38:09 UTC

archive.ph

The cipro story is especially bonkers. Ciprofloxacin can cause tendon ruptures or nerve damages, but only when taken for a long period of time and in very active people. No way it made that chick disabled.
The munchy daughter is some classic case - overachiever with lots of physically demanding extracurricular activities suddenly fell ill. It’s like those kind of people don’t know how to rest (or their parents didn’t teach them how to) and after some time the body just gives up. Or they want to rest, but parents don’t allow it, and they know from childhood they were allowed to rest only when ill. It’s mainly psychosomatic imo.

 

[A tree]

CNN Features Mother of a munchy sharing a bunch of insane munchausen's stories.

Ehlers-Danlos syndrome affects millions. Why isn't the medical profes…

archived 24 Dec 2022 08:38:09 UTC

archive.ph

I've had my eye on both the Dr with the insta account and the study being done to isolate the EDS gene in this story. Both sus AF. The doctor clearly caters to the totally able bodied dancer who wants a toob and toys crowd and the study has a problematic methodology in that it's chosen to take a sample from one large family who have a high incidence of hEDS.

Even if they do isolate a gene it could be a de novo mutation that occurred in an individual somewhere along the line that's been passed down this family.
They may find some interesting gene mutations for future research but without a wider sample all they're really identifying isn't ~The hEDS gene~ its one or several mutations of interest which occur in individuals in this particular family who are hypermobile. It could be a red herring. With a value-judgment diagnosis like hEDS that doesn't yet have a clinical marker you're effectively trying to retrofit one so assuming that this one family are the people who have definitively got "it" makes the data quite unsafe IMO.
Fuck knows why they've chosen to do it that way smells of some kind of nepotism tbh. Maybe a family friend looking for "answers" for them.
Would make far FAR more sense to take a sample of non related individuals with hEDS and try to find shared mutations to avoid the obvious pitfall here.

 

[Peppersalt]

Just wondering, is there any possibility of having some sort of file or description about the muchies discussed here like the one at the beginning of the pages or something? I feel like there are way more munchies now and most of the ones that are constantly talked about like Paige don't have some sort of intro for newbies and most munchies that are featured at the start aren't active or talked about as much anymore. It's sort of a mess to keep up with everyone.

 

[neonicotinoid]

Just wondering, is there any possibility of having some sort of file or description about the muchies discussed here like the one at the beginning of the pages or something? I feel like there are way more munchies now and most of the ones that are constantly talked about like Paige don't have some sort of intro for newbies and most munchies that are featured at the start aren't active or talked about as much anymore. It's sort of a mess to keep up with everyone.

Kiwifarms Munchie Wiki when?

 

[TheBigZee]

Family studies are a cornerstone of genetics research.

 

[A tree]

Family studies are a cornerstone of genetics research.

Sure, I'm just not convinced this will isolate The hEDS Gene for the reasons above.

Stupid gay broken farms won't let met edit so excuse double post. I've had people sharing this study all excited that the munchies are about to lose their EDS diagnoses. The best it's likely to generate are some promising avenues for further studies to explore.

 

[everybody in Portugal]

Stupid gay broken farms won't let met edit so excuse double post. I've had people sharing this study all excited that the munchies are about to lose their EDS diagnoses. The best it's likely to generate are some promising avenues for further studies to explore.

Is this the HEDGE study you are referring to? I thought a bunch of the gorls here that claim hEDS took part in it/some other genetic study looking for the hEDS gene a year or two ago?

If it's the same study, the results are going to be messed up anyway. If it's a different one and the family you're talking about aren't straight-up lying about their condishun, the results are still going to be messed up thanks to the problems you pointed out already. And none of these scenarios bode well for the advancement of hEDS diagnosis (or scientific advancement in general)

At the time the thinking wasn't that they'd lose their diagnoses as a result, more that as so many munchies had elected to take part in the study they were likely to fuck the results up and seriously muddy the waters wrt isolating a responsible gene

 

[A tree]

Is this the HEDGE study you are referring to? I thought a bunch of the gorls here that claim hEDS took part in it/some other genetic study looking for the hEDS gene a year or two ago?

If it's the same study, the results are going to be messed up anyway. If it's a different one and the family you're talking about aren't straight-up lying about their condishun, the results are still going to be messed up thanks to the problems you pointed out already. And none of these scenarios bode well for the advancement of hEDS diagnosis (or scientific advancement in general)

At the time the thinking wasn't that they'd lose their diagnoses as a result, more that as so many munchies had elected to take part in the study they were likely to fuck the results up and seriously muddy the waters wrt isolating a responsible gene

No it's a different, new one. A researcher who has hEDS herself is doing this study and is IMO overhyping it with several of these articles aimed squarely at the spoonie community saying she's going to find the gene by sequencing this one family.
I've not been able to find a good reason why she feels this family are The One. This makes me suspicious that they're known to her and its a way to get them all sequenced for free.

Its been making me think about how they apparently isolated the genes for the other types without difficulty and as you pointed out the dataset for hEDS is absolutely filthy because of all the dodgy diagnoses.

If you were designing a non family study you'd want a top team of highly skeptical rheumatologists screening your participants.

I have a very spergy and half formed theory about hEDS and why they haven't found The Gene which I will spoiler as it's so half baked and probably no1curr

Spoiler: sperging

From my own observations as an insufferable autism mommy and some science but nothing concrete yet there is an apparent higher incidence of hypermobility syndromes amongst the autistic.

We know also that people with hEDS have similar brain structure differences to people with ASD. We also know that the glial cells of the brain are a type of connective tissue and I posit that changes to these glial cells are responsible for these changes and the structural similarities and the connection to ASD.

We as yet don't have an identified autism gene and as we know presentations of autism can be quite variable and it can present with or without hypermobility. hEDS can also present in quite variable ways affecting different body systems to different extents in different individuals and where some family studies might be really interesting would be to see if the presentation is consistent within families and whether hEDS is actually one thing or a cluster of subtypes itself (there are rumours for example of a neurological subtype).

For this reason it is my gut feeling (and I've bounced this off a few proper docs in the field who reckon I'm on the right track and this is where the research is going) that autism and in fact ADHD too (all part of the same spectrum potentially) are caused by a number of mutations plus epigentics and the different combinations you may have expressed in an individual account for the different presentations of autism.

I reckon that the hEDS gene(s) are one of the potential autism gene(s) an autistic individual may inherit and expresss but that there is no one hEDS gene either. The reason neither has been easily identified so far is that both are caused by a complex expression of multiple mutations and epigenetic factors which would account for how differently they present. It's a puzzle within a puzzle.

The other types of EDS were presumably easy to find in the genetic code as individuals who have them have a glaring mutation in the collagen sequencing area. Not so for hEDS.

It's my personal spergy opinion that we will solve both of these puzzles in tandem and not for a long time yet, and that if there was a single simple hEDS mutation we would have already found it the easy way.

 

[TheBigZee]

Society would probably be better served by doing a life long study on the mental and physical impacts of youth competition in gymnastics and dance. It took a long time and a lot of research for people to become aware of CTE in contact sports.

 

[A tree]

Society would probably be better served by doing a life long study on the mental and physical impacts of youth competition in gymnastics and dance. It took a long time and a lot of research for people to become aware of CTE in contact sports.

Someone else im not sure if it was here or elsewhere suggested we should look into the impact of putting teenage girls onto the contraceptive pill as a routine thing in the light of so many of them having these apparent collapses into hypermobility/pain/autoimmune/psych related issues at that point in their lives.
I reckon they might be onto something.

 

[Turtlebees]

I'm leaning toward the dance and gymnastics (I'd toss figure skating in there too) line of thinking. These sports lean heavily into the tiny, slim pretty little girl (or balletic young man) dynamic while also requiring the development of the extreme flexibility that aids in gaining that precious EDS diagnosis. Kids in these sports have lives that revolve around staying small, exercising, and being judged on how they look while performing. What happens if you don't find success before you 'age out'? What if you grow too tall or too wide? When your whole life has been about not eating and not growing into an adult body, the transition to adulthood is rough.

There's a term that floats around in dance/gymnastics/skating communities - "the puberty monster". That refers to girls and boys being attacked by puberty and losing elements they could do with ease in smaller, undeveloped bodies. Promising kids begin to attract wider attention when they're around 10-12 years old in those disciplines. There's a narrow time window in which an aspiring dancer/gymnast/skater can hope to be selected for bigger things. When that doesn't happen, there's a crushing sense of What did I do with my youth? For some, that could translate into creating an extended childhood of sorts, needing care and continuing as the small uwu cutie everyone else needs to continue structuring their lives around.

Things are improving, albeit slowly, in gymnastics and skating. Adult bodies aren't as frowned upon as they were for the last 40 years and competitors are sticking around more often beyond their teens. However, there's still a tendency within the establishment to promote waifish, childlike girls and whenever one comes along, she's showered with high scores at competitions. Dance is dance, but at least there's more opportunity for adults to make a career there. A mentally and physically stressful career, but a career nonetheless.

 

[A tree]

I'm leaning toward the dance and gymnastics (I'd toss figure skating in there too) line of thinking. These sports lean heavily into the tiny, slim pretty little girl (or balletic young man) dynamic while also requiring the development of the extreme flexibility that aids in gaining that precious EDS diagnosis. Kids in these sports have lives that revolve around staying small, exercising, and being judged on how they look while performing. What happens if you don't find success before you 'age out'? What if you grow too tall or too wide? When your whole life has been about not eating and not growing into an adult body, the transition to adulthood is rough.

There's a term that floats around in dance/gymnastics/skating communities - "the puberty monster". That refers to girls and boys being attacked by puberty and losing elements they could do with ease in smaller, undeveloped bodies. Promising kids begin to attract wider attention when they're around 10-12 years old in those disciplines. There's a narrow time window in which an aspiring dancer/gymnast/skater can hope to be selected for bigger things. When that doesn't happen, there's a crushing sense of What did I do with my youth? For some, that could translate into creating an extended childhood of sorts, needing care and continuing as the small uwu cutie everyone else needs to continue structuring their lives around.

Things are improving, albeit slowly, in gymnastics and skating. Adult bodies aren't as frowned upon as they were for the last 40 years and competitors are sticking around more often beyond their teens. However, there's still a tendency within the establishment to promote waifish, childlike girls and whenever one comes along, she's showered with high scores at competitions. Dance is dance, but at least there's more opportunity for adults to make a career there. A mentally and physically stressful career, but a career nonetheless.

Your whole centre of gravity changes once your child bearing hips and tits come in all those inversions and flips your muscle memory has trained for are suddenly hard mode.

We were just recently watching one of the coaches perform at my kids acro gym club's end of year show, a former highly competitive gymnast, mid to late 20s at a guess, who dropped out due to injury. Her floor work was fine but you could see it in every serious trick where she had to invert her body how much she was struggling even with her insane visible muscle tone compared to the younger girls who can just flip about like it's nothing.
She just wasn't the right shape any more and the only way she could have remained that way would be to ana chan herself. Maybe even then just not quite gymnast tiny.

Kiddo only does it for fun but there's something insane about watching the level some of these girls train to and how much of their lives it eats up at squad level only for it to be all for nothing for the vast majority of them.

What does happen to your body when you train like that on malleable child bones then stop?

 

[TheBigZee]

Taking out the social stuff around those sports, I wonder if the extreme stretching/movements doesn't cause microscopic damange to the tendons/ligaments that cascades with time. I also wonder if making your body that flexible doesn't fuck up the physiological feedback between the body and the brain that regulates autonomic response to emotion. Like, someone's in a stressfull situation, the brain tries to adjust muscle tone, it can't achieve the feedback from the body it needs to say "job done", so it provokes a more extreme stress response to achieve the desired tone. Subjectively people would describe this as disordered anxiety. A situation that should have made the muscles tighten a bit instead provokes high heart rate, sweating, and shortness of breath.

Anxiety is the #1 comorbidity of hypermobility. You can objectively observe the heightened stress response.

 

[Dnein]

Overuse and repetitive physical impact is definitely an issue for joints. I'd be curious about head impacts as well, a sort of micro TBI with falls and gravitational force of these movements. Most munchies seem to go through a dramatic change at some point, which I expect is more social (failure to launch, failure to achieve grandiose expectations), but it's always interesting to speculate if there's more to some of these cases with rapid psych decline.

Birth control is an interesting idea. I haven't read alot about it, but it looks like progesterone and estrogen have opposing effects on laxity, so progesterone only might particularly be interesting to consider. Still, fucked up menstrual rhythms and inflammation can be damaging in themsleves (as would be joints that vary in laxity over a month), so the normalization of hormones via the pill might be protective.

 

[std::string]

Overuse and repetitive physical impact is definitely an issue for joints. I'd be curious about head impacts as well, a sort of micro TBI with falls and gravitational force of these movements.

I wouldn't be surprised if gymnastics could cause CTE. Any rapid deceleration of your head (like, say, on the uneven bars...) is not great for the ol' brainpan. Falling could concuss someone and then there's potential post-concussion syndrome, which can cause dysautonomia.

I guess there's a plausible physical etiology. It doesn't really line up with usual CTE symptoms but I'm mostly familiar with football players. Though I don't think it's a huge stretch to assume the pretty petite gymnast and bulk hulkmeat the linebacker would have very different expressions of CTE symptoms.