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

[Sooper Speshul Southerner]

Geez, I'm out of the loop for like, a week, and I come back to a new cow, a r/IF slapfight, and loads of S-J chimping. Whew, looks like I'll be spending my day catching up.

 

[Munchie_Minder]

That's fascinating because you'd think that that a lack of collagen would hasten skin aging everywhere. Now that you mention it, though, it makes sense that forehead wrinkles wouldn't be caused by the sagging/laxity-type stuff that affects other areas of the face and body. You mentioned hands and forehead; do you have any information on the lower face? I'd expect EDS patients to become jowly more quickly.

You’re going to force me to sperg on collagen and connective tissue aren’t you?

Sigh... okay..im sorry.

Spoiler: Sperg on Collagen and How it is Made

So, first we need to understand some basic a&p, bio and chemistry. The human body’s tissue is made up of many different kinds of collagens. There’s a bit of debate about how many different ones, but let’s say there are 16 different kinds, divided by scientists into 5 different types.

Now, what is collagen “made of”? It is made of proteins, which are strands of amino acids put together. What is an amino acid? An amino acid is an organic compound that must contain both a carboxyl and an amine function (hence amino acid). Now, the human body has the ability to make some of these (ie put together certain elements to make the amino acids) but some of them, it must get from the environment and diet and these are called essential amino acids.

Okay, so hopefully you’re still with me. When the body starts putting these amino acids together, it gets the information on how to build proteins in a person’s dna. The DNA is transcripted into RNA, and then the ribosome makes it into a protein. If you’re curious about how this works molecularly, this is a good link that explains how this works: https://www.sciencelearn.org.nz/resources/1901-proteins-what-they-are-and-how-they-re-made

Okay, so we’ve made the protein, now the protein has its own structure on how it lays against the other proteins. Let’s say we didn’t make the protein exactly correctly. What happens? Well, that protein isn’t going to lay against the others in the exact same way that it does in other people. The type of protein that the particular type of collagen is supposed to be made of may lack the proper strength, may stretch out more than it should, etc.

Now, proteins are what make up all kinds of things in our body. Insulin is a protein. Bones are made of protein, muscles, tendons, etc. all made of proteins. Okay, so back to collagen. The types of collagen in the body are divided into 5 types and the genes that control those 5 types have been identified:

(Edit to add: By the way, ignore the I-X on the far left of this chart. This is an antiquated way of typing EDS, which is no longer used and has no bearing on which of the 5 types of collagen are affected. I just used this to demonstrate some of the known genes for encoding collagen and types of tissue affected.)

So, Ehlers Danlos Syndrome has become the umbrella term for defects in collagen that affect the ligaments, tendons, and vascular tissues. Interestingly, osteogenesis imperfecta, or brittle bone disease (most common genes are COL1A1 and COL1A2) are not considered Ehlers Danlos, but the vascular types are. This is because these seemed like such different disorders when they were first being described before any of the genetics and molecular understanding.

Okay, so now, we have the known genes for encoding those types of tissue, BUT we don’t have ALL the known genes for encoding all the proteins that make up those collagens. So, to make this simple, I’m going to use osteogenesis imperfecta, because bones6 are more “simple” in that they don’t contain as much mixed connective tissue. So, only people who have COL1A1 or COL1A2 have OI? Nope! There are two other known genes that cause OI: CRTAP and P3H1. These genes are the ones that are responsible for manufacturing the proteins that are used to build the bones (collagen type) whereas COL1A1 and 2 encode how the proteins are put together to form bone matrix.

So, all this is to say that you can have a genetic problem making the actual protein, which causes the protein not to lay together properly, etc, OR you can have an issue with the gene which tells the protein where to go, how much to make, etc.

Now, onto skin. Skin is a lot more complex than bone. The top layer consists mostly of the protein keratin, which is what makes up most of your epidermis, hair, and nails. But why are my nails hard and my skin isn’t? Because your genes are encoding how that protein lays and how much is present mixed with other things like immune cells and melanin. It’s magic, truly. Anyway, the next layer down, your dermis is where things get really tricky and you’ve got everything from fibrils of elastin and collagen to nerve and hair follicles. This is the layer that gives your skin it’s stretch. So imagine you’re missing part of the material that is used to make skin bounce back into shape, and this is what happens in people with dermatospraxis type EDS.

But, to your question about people with HEDS and CEDS. In general, the skin is more stretchy, but it also bounces back to shape better than most controls. In general, we saw more “jowly” or sag measured in people with classical, but people with Hypermobile type were more likely to have saggy upper eyelids. A lot of the questioning in current HEDS research (in other clinics) is finding out whether there is an absence of a certain type of collagen, a problem with encoding, or whether the genes are encoding it to go elsewhere. The wildest part of this research is seeing how some patients have stretch marks in odd places like the lower back, the back of knees, etc, and then have zero stretch marks on their stomachs after pregnancy, a place where many people get them normally. So, there is a lot of question as to whether this is a placement problem or a manufacturing problem in HEDS. This aging research is questioning whether we can turn on certain types of collagen production in certain areas and what types of collagen are breaking down that cause aging.

It truly is fascinating. One of the most interesting parts of what I have been involved with has been comparing skin softness and “doughiness” And “velvetyness” of skin. How to quantify this and how to explain it to people who may have never seen a patient with EDS is tricky.

Edit: I tried to go back and clarify this for people who may not be medfags but if I glossed over something or you’re confused, let me know and I will try to clear it up.

 

[Sooper Speshul Southerner]

Preliminary catch up thoughts. That mod MBIResearch or whatever over on IF isn't actually practicing anesthesiology, right? She WAS an anesthesiologist and is now on disability or something? That's the only way I can see that she has that much time to overly police the IF board. No doctor actively in practice has that kind of time. I remember seeing at one point when they had their MUH RACISM blow up that she claims having a load of health issues. I'm convinced she's a munch herself...change my mind.

That Jessi chick is a real fucking piece of work. What an anger inducing cunt.

 

[Munchie_Minder]

Preliminary catch up thoughts. That mod MBIResearch or whatever over on IF isn't actually practicing anesthesiology, right? She WAS an anesthesiologist and is now on disability or something? That's the only way I can see that she has that much time to overly police the IF board. No doctor actively in practice has that kind of time. I remember seeing at one point when they had their MUH RACISM blow up that she claims having a load of health issues. I'm convinced she's a munch herself...change my mind.

That Jessi chick is a real fucking piece of work. What an anger inducing cunt.

I have zero intentions of changing your mind but something I will tell you is that anesthesiologists have a MUCH higher rate of drug and alcohol abuse than other types of physicians. It has been proposed that sitting at patient’s head, inhaling the drugs used during procedures, even in small amounts over time plus the temptation with access to others is a lot for people with genetic predisposition to handle. So, my better guess would be forced time off due to suspension or loss of license. That’s probably a LOT more common than actual munchie. May even have developed some “health problems” to cover for why they’re off.. enter munchie. But all of this is pure speculation based on my experiences knowing quite a few anesthesiologists.

I have a friend who is a practicing anesthesiologist so if anyone has any info, I may be able to assist in research.

 

[AT 903]

I have zero intentions of changing your mind but something I will tell you is that anesthesiologists have a MUCH higher rate of drug and alcohol abuse than other types of physicians. It has been proposed that sitting at patient’s head, inhaling the drugs used during procedures, even in small amounts over time plus the temptation with access to others is a lot for people with genetic predisposition to handle. So, my better guess would be forced time off due to suspension or loss of license. That’s probably a LOT more common than actual munchie. May even have developed some “health problems” to cover for why they’re off.. enter munchie. But all of this is pure speculation based on my experiences knowing quite a few anesthesiologists.

I have a friend who is a practicing anesthesiologist so if anyone has any info, I may be able to assist in research.

I wouldn’t be surprised with that. I did wonder how if she’s supposedly in the medical field she had so much time on her hands.

I know the new mod claims she was an emt but retired for ill health /r/ifaftermath Ripped her apart here she has made some wild claims!

 

[RayneBeaux Brite]

Preliminary catch up thoughts. That mod MBIResearch or whatever over on IF isn't actually practicing anesthesiology, right? She WAS an anesthesiologist and is now on disability or something? That's the only way I can see that she has that much time to overly police the IF board. No doctor actively in practice has that kind of time. I remember seeing at one point when they had their MUH RACISM blow up that she claims having a load of health issues. I'm convinced she's a munch herself...change my mind.

That Jessi chick is a real fucking piece of work. What an anger inducing cunt.

She is actually practicing. She does part time in a pain clinic and part time in the OR, all at the same institution though. How she finds the time for this shit I have no idea but I’d guess that maybe the other observations are correct and it’s possible she’s on a limited schedule for the same reasons already mentioned.

 

[Munchie_Minder]

She is actually practicing. She does part time in a pain clinic and part time in the OR, all at the same institution though. How she finds the time for this shit I have no idea but I’d guess that maybe the other observations are correct and it’s possible she’s on a limited schedule for the same reasons already mentioned.

Do you have evidence of this or just going by what was said by her on Reddit?

 

[RayneBeaux Brite]

Do you have evidence of this or just going by what was said by her on Reddit?

I don’t have any good receipts, no. At one point there was a brief glimpse of an actual MD badge that was designated as Anesthesiology but of course that doesn’t mean shit either and I’m completely guilty of giving her the benefit of the doubt here. On that note, is there any evidence that she was a board certified anesthesiologist at any point or could she be pulling a whole Dirty John scenario?

 

[Kate Farms Shill]

Do you have evidence of this or just going by what was said by her on Reddit?

I'm working on it but my stalking time has been sharply curtailed by some work and family shit.

However I have to laugh at the fact that Pixie's mod announcement after her own posts were deleted has, itself, been deleted. And my reddit inbox has like 17 messages about the current drama and possible leads I have yet to go through. Oy.

 

[Cheeseman]

However I have to laugh at the fact that Pixie's mod announcement after her own posts were deleted has, itself, been deleted. And my reddit inbox has like 17 messages about the current drama and possible leads I have yet to go through.

the tattling is probably the most pathetic part of the implosion over on reddit.

 

[Kate Farms Shill]

the tattling is probably the most pathetic part of the implosion over on reddit.

I enjoy being their "teacher teacher johnny's eating paste again" in the same way I enjoy trash TV and listening to people have dramatic public meltdowns.

 

[Crunchy Leaf]

Potential new munchie? @bandaidknees on Insta, @opheliajcbrown on Twitter.
Insta bio: Disabled // Chronically ill // Queer // Complex Regional Pain Syndrome & Fibro // Christian // Feminist // Activist
Twitter bio: Complex Regional Pain Syndrome warrior

• Doris the Service Dog

• They/Them

 

[chronicallybullshitting]

https://www.youtube.com/watch?v=Q8WfpActb8I


Anyone got thoughts on this? She's one good actress....

 

[Munchie_Minder]

https://www.youtube.com/watch?v=Q8WfpActb8I


Anyone got thoughts on this? She's one good actress....

Is DID real? Maybe. Is the portrayal she has of it real? I would say that it is heavily, heavily influenced by her research on the internet.

So, dissociative disorders have been found in all countries of the globe, but not nearly in the prevalence and way this is depicted, except in a western society that’s heavily influenced by media.

Repressed memories are absolutely real and I didn’t believe they were until I mysteriously remembered a traumatic event that I was able to verify happened with witness accounts. That was a strange day.

So, in general, when something happens that seems impossible, I’m not quick to rule it out. But, from the research that I’ve seen, dissociated states in other countries are not organized like this like they are by people who have seen western depictions of “multiple personalities”. They are seen in cases of dissociative fugue, where a stressed person suddenly leaves and doesn’t remember what they did and turns up somewhere, dissociative amnesia, where the person doesn’t remember an event, and dissociative motor disorders, like the infamous munchie PNES. You aren’t going to go into the jungle to an untouched society and find Joe Tribal man with a hundred different personalities, alters, protectors and a system in place.

 

[Crunchy Leaf]

Oh man, Ophelia used to be a ballerina. What percentage of munchies used to take part in activities that are well known for producing eating disordered girls?

 

[HotpieIsTheNightKing]

Right first KF post for me so apologies for formatting mistakes etc. Extreme irritation has brought me out of lurking, but yeah... this bitch. (Disabled-but-not-defeated).

I’m hoping I can just write a quick single paragraph explaining the following pics and then attach the photos, I’d rather do the spoilered way but I cbf atm.

First: this strange position that she emphasises was ‘worth it’. For what? The picture? Or you had to have some reason to bring up only holding it for a few seconds? Bizarre. 2nd and 3rd pics: she seriously announces this on every entry to a room? Medic alert bracelets exist for a reason you OTT fucking re.tard. 4th/5th: - I don’t understand this at all. Is she serious with the trigger warning?? Last photo (for now), and she has several of examples of this posted on her account: that is not DPT. Sigh. Apologies again, will work on formatting on future posts!

ETA: Also, lol @ “whenever I walk into a room”. I thought you were wheelchair bound??
As she is a flight risk I may spend some time collecting more baloney in the next few hours.

Eta 2 - FFS I noticed my Instagram thing. I’m an idiot. Bear with me. Last eta fingers crossed - think it’s all good now?

Aight gotta say something- why is literally every pots munchie on insta that at least tries compression using knee highs? Best thing is full tights as in high waisted, for symptom reduction. Knee highs are not much compression compared, and sure, they are good for varicose veins etc if you stand a lot, they are unlikely to be hugely beneficial in moderate or worse POTS. I guess you can't get the tights in such cute patterns, and they are more of a pain in the ass without getting you asspat points like a port does. It's just wild that you would have severe enough POTS for a chair and thinking that knee highs will help you lol

 

[thirsttrap12345]

Aight gotta say something- why is literally every pots munchie on insta that at least tries compression using knee highs? Best thing is full tights as in high waisted, for symptom reduction. Knee highs are not much compression compared, and sure, they are good for varicose veins etc if you stand a lot, they are unlikely to be hugely beneficial in moderate or worse POTS. I guess you can't get the tights in such cute patterns, and they are more of a pain in the ass without getting you asspat points like a port does. It's just wild that you would have severe enough POTS for a chair and thinking that knee highs will help you lol

This is one of the most laughable elements of the potsie culture on IG. Bc sitting in a fucking chair all day with compression knee highs that are not even medical grade does jack shit.

 

[Redandvino]

Potential new munchie? @bandaidknees on Insta, @opheliajcbrown on Twitter.
Insta bio: Disabled // Chronically ill // Queer // Complex Regional Pain Syndrome & Fibro // Christian // Feminist // Activist
Twitter bio: Complex Regional Pain Syndrome warrior

• Doris the Service Dog

• They/Them

I think this is the one who got put in a hospital and forced to exercise through excruciating asthma attacks because they decided her pain was in her head (diffuse amplified musculoskeletal pain syndrome I think. But maybe she claims EDS as the reason for it now?) and wouldn’t let her use her inhaler because supposedly that was in her head too. She’s gone viral a handful of times... super annoying to me.

who got put in a hospital

OK. So it wasn’t Ophelia specifically, though they do mention it on their twitter.

Invisibilia: For Some Teens With Debilitating Pain, The Treatment Is More Pain

Thousands of teens suffer from a rare chronic pain condition that makes everyday life excruciating. Some are trying a counterintuitive treatment approach: Load up on pain until you learn to ignore it.

n.pr

And there’s the article this tweet is in response to

Omg and the frog plushie all over their account is a jellycat like AJ used to have. I think it was her disgusting bunny she dragged everywhere that was a jellycat?

 

[Toohottotrot]

I could see a program like backfiring especially if they have a support system which includes pain patients

 

[PootPoot2]

Anyone got thoughts on this? She's one good actress....

Looks like it was pulled from the reject pile of video auditions for Joss Whedon’s Dollhouse. Absolutely desperate, sweet eyeshadow though.

Potential new munchie? @bandaidknees on Insta, @opheliajcbrown on Twitter

Yawn IMO, doesn’t seem very active as a munch, mostly SJW chimping. I will however leave this here:

Spoiler: So fabulous!

So Jessi, who swore during her IG Live 12hrs ago that she was too decrepit and so sorry she wasn’t able to post, proceeded to spend the next 12hrs posting ten million panels of no-one-really cares ASK responses to her IG Story, many of them just scintillating Netflix recommendations. To save you from wading through that drivel, here’s a roundup of the more interesting entries:

Spoiler: Jessi’s Story

Being that she finds herself far more imaginative than anything streaming on Netflix currently, Jessi is leaning hard into her chemo narrative to retain her enraptured audience,


As always, her spastic answers leave us only with more questions.

She’s also apparently changed one diagnosis, downgrading her leaky butt from UC to Crohn’s. She makes sure to call it a “misdiagnosis” because medical mysteries like her who latch on to terms they heard once never experience routine revisions during the investigative diagnostic process, they’re only ever brutalized and misunderstood by the insensitive medical industrial complex.

Full disclosure: I can’t keep track of all her claimed diagnoses and don’t remember whether she’s mentioned UC before or not and if so, when she first brought it up.

Can’t recall where I saw it and can’t find it now so she may have deleted or revised, but she mentioned somewhere yesterday on IG that she had surgery for her hiatal hernia. No mention of surgery prep, the procedure, etc first, just a passing reference to being in surgical recovery. Still HASHTAG DYING, ok.

Personal cow Caity has heard my prayers and gotten into mommy’s makeup again! Plus, an exciting new project...

Spoiler: Hashtag SaveTheTurtles

Something about how she shoops herself for these makeup posts makes her look on the hard side of 35 to me. Guess it’s the over-correcting for thin cred.

Speaking of thin cred:

Can’t wait to try the technicolor ana-chan toobie treats!