- Joined
- Jul 17, 2016
They all look so deconditioned. It's very unflattering and just makes you look like a lazy shit, not sick.
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Currently the vast majority of Ehlers-Danlos Syndrome patients are forced to go abroad (Barcelona or the US) to receive lifesaving surgery for Craniocervical Instability, Atlantoaxial Instability & Chiari Malformation (Hindbrain Herniation). These conditions can lead to paralysis and death if untreated. This cost falls to the patient which can be in the excess of £100,000! Patients fundraise for this via successful crowd funding efforts, without this patients are left to deteriorate.
It is neglectful of the NHS to keep refusing to complete these vital life saving surgeries on EDS patients. When patients ask why they can’t receive the surgery they are usually given one of the following answers:
1) There aren’t enough knowledgeable Neurosurgeons within the UK to complete the surgeries.
2) Patients are assessed on a case by case basis.
3) The risks are too high in EDS patients.
She is now 25 years old. She has gone from a fit and active young woman, who enjoyed sports and keeping fit, participated in many hobbies, had an active social life and had high hopes and dreams for her career and future, to someone who uses a wheelchair and finds even spending any length of time sitting up tiring and painful. She is in severe and constant pain, needing constant heavy pain relief and has a whole host of other symptoms that increasingly leave her feeling very ill and bed bound, unable to even carry out the most basic of tasks.
The longer she is left without treatment, the more she will deteriorate and the lower the chance of a good recovery.
Pretty sure this doctor in Barcelona and Henderson in the DC suburbs are the two main CCI yes-men who seem to agree to do surgery on anyone who comes to them with cash and imaging, no matter what the MRIs show. Also neither of them take insurance...$$$. I’m a stupid American so take this with a grain of salt but your instincts are probably right. Especially since we’ve seen complaints from other #spooniewarriors that the NHS doesn’t like to give out wheelchairs and ports and saline to anyone who can touch their toes and feels woozy when they stand up sometimes.So this is something i've been on and off looking into since the middle of October when it crossed into my twitter feed. This lass, Beth, otherwise known as Roo (@ActuallyRoo on twitter), was on an old BBC documentary years ago as she has Kleine–Levin syndrome (KLS) or Sleeping Beauty Syndrome, which makes you sleep a lot basically. She is now an active chronic illness warrior on twitter apparently and whilst I honestly have no idea whether she is munching or not, I am concerned about her current antics.
So Roo was diagnosed with EDS (causing other issues like GP) in 2016 and CCI and is claiming she needs surgery to save her life now because no doctor in the UK is qualified to perform the surgery.
Obviously all of us here have heard this before, so my red flags were all going up. Her mother has started a gofundme for her travel to Barcelona to have her spine fusion to stop her from having strokes and dying. Now, as a britfag I was surprised to find out the NHS won't provide surgery for her so i did some digging and low and behold, she doesn't seem to be wrong. Looking up (CCI) treatment UK just spawns a ton of articles about how they won't provide the surgery and patients are forced to fund their own treatment abroad, with there even being a petition running to get the NHS to provide the treatment describing the reasons the NHS gives when they reject patients:
Now, from going through this here thread I think we are all aware of the risks involved with CC fusion surgery, so I would assume the main reason the NHS aren't performing the surgeries is that the success rate is not that high and is more likely to do more harm than good. According to Roo, there are surgeons that will do spinal fusion treatments, just not for people with her "complex needs"
I really do find it crazy hard to believe the NHS would leave people with severe, life threatening conditions like this to just fund their own treatments. If your neck could dislocate at any moment, a doctor should be helping you. Something here just does not add up.
So, basically it all sounds terrible for Roo and she's gonna die without this treatment because her neck is gonna dislocate. According to her mother's gofundme post, her condition is so severe she has already suffered from one suspected TIA (transient ischemic attack, basically a mini stroke caused by a very short interruption of blood flow to the brain) and she has to wear a neck brace to reduce her risks.
Except... when she doesn't. Very dangerous head positioning given the risks in that second image if you ask me. First picture is her current profile image, second is featured on her HELP ME post as evidence of how sick she is.
But, I digress, her mother continues in her gofundme to describe how Roo's health has deteriorated so much and how they're begging for help to get her this treatment.
She also claims her daughter's KLS is something that is rare and extremely debilitating, but from what I can find while its something that can cause a lot of problems, it usually spontaneously resolves itself and is no way a life sentence. Makes everything a little harder to take seriously, which I do genuinely feel guilty for thinking but I just can't help it after seeing everyone in this thread.
Now, I genuinely have no idea if Roo is munching, I think she probably does have EDS (her thumb in that picture looks hyper extended), but as far as seeking this treatment goes, it just seems like following this growing trend. Her gofundme already has over £10,000 donated, so her pleas for help are obviously doing something, but I feel I need to dig more into the UK's treatment of EDS patients and this condition to confirm more. Surgery for CCI is by no means a given miracle cure for everyone and can leave you perma fucked physically, so I personally would be avoiding it like the plague and finding another alternative if I was her.
If she is a genuine sufferer, this just proves how much damage the munchie crew are doing to those who need the help as I can't see anyone claiming to be dying of EDS related complications anymore and not roll my eyes and assume its just one more attention seeker added to the pot.
Any help looking into this one would be appreciated folks
So this is something i've been on and off looking into since the middle of October when it crossed into my twitter feed. This lass, Beth, otherwise known as Roo (@ActuallyRoo on twitter), was on an old BBC documentary years ago as she has Kleine–Levin syndrome (KLS) or Sleeping Beauty Syndrome, which makes you sleep a lot basically. She is now an active chronic illness warrior on twitter apparently and whilst I honestly have no idea whether she is munching or not, I am concerned about her current antics.
So Roo was diagnosed with EDS (causing other issues like GP) in 2016 and CCI and is claiming she needs surgery to save her life now because no doctor in the UK is qualified to perform the surgery.
![]()
Obviously all of us here have heard this before, so my red flags were all going up. Her mother has started a gofundme for her travel to Barcelona to have her spine fusion to stop her from having strokes and dying. Now, as a britfag I was surprised to find out the NHS won't provide surgery for her so i did some digging and low and behold, she doesn't seem to be wrong. Looking up (CCI) treatment UK just spawns a ton of articles about how they won't provide the surgery and patients are forced to fund their own treatment abroad, with there even being a petition running to get the NHS to provide the treatment describing the reasons the NHS gives when they reject patients:
Now, from going through this here thread I think we are all aware of the risks involved with CC fusion surgery, so I would assume the main reason the NHS aren't performing the surgeries is that the success rate is not that high and is more likely to do more harm than good. According to Roo, there are surgeons that will do spinal fusion treatments, just not for people with her "complex needs"
![]()
I really do find it crazy hard to believe the NHS would leave people with severe, life threatening conditions like this to just fund their own treatments. If your neck could dislocate at any moment, a doctor should be helping you. Something here just does not add up.
So, basically it all sounds terrible for Roo and she's gonna die without this treatment because her neck is gonna dislocate. According to her mother's gofundme post, her condition is so severe she has already suffered from one suspected TIA (transient ischemic attack, basically a mini stroke caused by a very short interruption of blood flow to the brain) and she has to wear a neck brace to reduce her risks.
Except... when she doesn't. Very dangerous head positioning given the risks in that second image if you ask me. First picture is her current profile image, second is featured on her HELP ME post as evidence of how sick she is.
![]()
![]()
But, I digress, her mother continues in her gofundme to describe how Roo's health has deteriorated so much and how they're begging for help to get her this treatment.
She also claims her daughter's KLS is something that is rare and extremely debilitating, but from what I can find while its something that can cause a lot of problems, it usually spontaneously resolves itself and is no way a life sentence. Makes everything a little harder to take seriously, which I do genuinely feel guilty for thinking but I just can't help it after seeing everyone in this thread.
Now, I genuinely have no idea if Roo is munching, I think she probably does have EDS (her thumb in that picture looks hyper extended), but as far as seeking this treatment goes, it just seems like following this growing trend. Her gofundme already has over £10,000 donated, so her pleas for help are obviously doing something, but I feel I need to dig more into the UK's treatment of EDS patients and this condition to confirm more. Surgery for CCI is by no means a given miracle cure for everyone and can leave you perma fucked physically, so I personally would be avoiding it like the plague and finding another alternative if I was her.
If she is a genuine sufferer, this just proves how much damage the munchie crew are doing to those who need the help as I can't see anyone claiming to be dying of EDS related complications anymore and not roll my eyes and assume its just one more attention seeker added to the pot.
Any help looking into this one would be appreciated folks
I’m late but the easiest way to show how woke you are is to yell positive things as loud as possible about trans women.They're holding a sign that says "trans women are women", but they're AFAB? There's a lot of things someone born female can identify as, but a trans woman is not one of those things.
Well, as someone who is not hyper-flexible i was giving the lass the benefit of the doubt. Maybe you should invest in a munchie kit of your own? It seems to generate many asspats.If that's what a hyperextended EDS thumb looks like, then me, my mom, a sibling and a sibling's kid all have EDS ffs. Where's MY Munchie kit, hmmmm?
Yes my thoughts exactly on the Chiari, most only find it when another scan picks it up. The NHS is very strained for cash and can't give people treatment on the fly. Waiting lists for non-essential surgeries are a good 6 weeks minimum in most places. I'm also unsure as to how EDS means recovering from surgery is super duper difficult. Just because your tissues are a bit weaker doesn't mean any hospital worth their salt shouldn't be able to care for you. I will keep an eye out for her posts in the future to see where her journey takes her!Pretty sure this doctor in Barcelona and Henderson in the DC suburbs are the two main CCI yes-men who seem to agree to do surgery on anyone who comes to them with cash and imaging, no matter what the MRIs show. Also neither of them take insurance...$$$. I’m a stupid American so take this with a grain of salt but your instincts are probably right. Especially since we’ve seen complaints from other #spooniewarriors that the NHS doesn’t like to give out wheelchairs and ports and saline to anyone who can touch their toes and feels woozy when they stand up sometimes.
I was faffing around on a chronic fatigue forum a while ago for some reason and I guess after Jen Brea mentioned CCI everyone in this 90+ page thread started asking where to get upright MRIs and talking about going to Barcelona or Maryland for fusion surgery so either all of these random people happen to have a rare brain malformation bad enough to need invasive brain surgery (a lot of them were talking about chiari which isn’t even symptomatic in a lot of people) OR these docs have less than stellar standards for who they’ll put on the operating table. One seems more likely than the other to me.
To be fair, there is a range of hyperextension, so it may not be something most people can spot unless the fingers really flex backwards. PL (sorry) Only one of my fingers does not hyperextend, and it is a thumb, and that pic looks like my one normal thumb. I'm only saying this to highlight that someone can have hypermobile joints without having a diagnosable condition. But I know that is not fun, and you don't get your munchie kit when you try to live a normal life with quirky appendages.Well, as someone who is not hyper-flexible i was giving the lass the benefit of the doubt. Maybe you should invest in a munchie kit of your own? It seems to generate many asspats.
Yes my thoughts exactly on the Chiari, most only find it when another scan picks it up. The NHS is very strained for cash and can't give people treatment on the fly. Waiting lists for non-essential surgeries are a good 6 weeks minimum in most places. I'm also unsure as to how EDS means recovering from surgery is super duper difficult. Just because your tissues are a bit weaker doesn't mean any hospital worth their salt shouldn't be able to care for you. I will keep an eye out for her posts in the future to see where her journey takes her!
Look at her leg though, the only reason that I can think of why someone would pose with their leg in the air like that is to show how flexible they are but her knee is bent and her shoulders are hunched forward and both these things indicate that her leg is not that flexible.To be fair, there is a range of hyperextension, so it may not be something most people can spot unless the fingers really flex backwards. PL (sorry) Only one of my fingers does not hyperextend, and it is a thumb, and that pic looks like my one normal thumb. I'm only saying this to highlight that someone can have hypermobile joints without having a diagnosable condition. But I know that is not fun, and you don't get your munchie kit when you try to live a normal life with quirky appendages.
I was wondering about that leg thing too, very strange, and not hypermobile, lol. Anyone who has kept up with yoga can do better than that.Look at her leg though, the only reason that I can think of why someone would pose with their leg in the air like that is to show how flexible they are but her knee is bent and her shoulders are hunched forward and both these things indicate that her leg is not that flexible.
(Or she's just a fucking weirdo who thought that was a flattering way to pose for a photo)
To be fair, there is a range of hyperextension, so it may not be something most people can spot unless the fingers really flex backwards. PL (sorry) Only one of my fingers does not hyperextend, and it is a thumb, and that pic looks like my one normal thumb. I'm only saying this to highlight that someone can have hypermobile joints without having a diagnosable condition. But I know that is not fun, and you don't get your munchie kit when you try to live a normal life with quirky appendages.
So this is something i've been on and off looking into since the middle of October when it crossed into my twitter feed. This lass, Beth, otherwise known as Roo (@ActuallyRoo on twitter), was on an old BBC documentary years ago as she has Kleine–Levin syndrome (KLS) or Sleeping Beauty Syndrome, which makes you sleep a lot basically. She is now an active chronic illness warrior on twitter apparently and whilst I honestly have no idea whether she is munching or not, I am concerned about her current antics.
So Roo was diagnosed with EDS (causing other issues like GP) in 2016 and CCI and is claiming she needs surgery to save her life now because no doctor in the UK is qualified to perform the surgery.
![]()
Obviously all of us here have heard this before, so my red flags were all going up. Her mother has started a gofundme for her travel to Barcelona to have her spine fusion to stop her from having strokes and dying. Now, as a britfag I was surprised to find out the NHS won't provide surgery for her so i did some digging and low and behold, she doesn't seem to be wrong. Looking up (CCI) treatment UK just spawns a ton of articles about how they won't provide the surgery and patients are forced to fund their own treatment abroad, with there even being a petition running to get the NHS to provide the treatment describing the reasons the NHS gives when they reject patients:
Now, from going through this here thread I think we are all aware of the risks involved with CC fusion surgery, so I would assume the main reason the NHS aren't performing the surgeries is that the success rate is not that high and is more likely to do more harm than good. According to Roo, there are surgeons that will do spinal fusion treatments, just not for people with her "complex needs"
![]()
I really do find it crazy hard to believe the NHS would leave people with severe, life threatening conditions like this to just fund their own treatments. If your neck could dislocate at any moment, a doctor should be helping you. Something here just does not add up.
So, basically it all sounds terrible for Roo and she's gonna die without this treatment because her neck is gonna dislocate. According to her mother's gofundme post, her condition is so severe she has already suffered from one suspected TIA (transient ischemic attack, basically a mini stroke caused by a very short interruption of blood flow to the brain) and she has to wear a neck brace to reduce her risks.
Except... when she doesn't. Very dangerous head positioning given the risks in that second image if you ask me. First picture is her current profile image, second is featured on her HELP ME post as evidence of how sick she is.
![]()
![]()
But, I digress, her mother continues in her gofundme to describe how Roo's health has deteriorated so much and how they're begging for help to get her this treatment.
She also claims her daughter's KLS is something that is rare and extremely debilitating, but from what I can find while its something that can cause a lot of problems, it usually spontaneously resolves itself and is no way a life sentence. Makes everything a little harder to take seriously, which I do genuinely feel guilty for thinking but I just can't help it after seeing everyone in this thread.
Now, I genuinely have no idea if Roo is munching, I think she probably does have EDS (her thumb in that picture looks hyper extended), but as far as seeking this treatment goes, it just seems like following this growing trend. Her gofundme already has over £10,000 donated, so her pleas for help are obviously doing something, but I feel I need to dig more into the UK's treatment of EDS patients and this condition to confirm more. Surgery for CCI is by no means a given miracle cure for everyone and can leave you perma fucked physically, so I personally would be avoiding it like the plague and finding another alternative if I was her.
If she is a genuine sufferer, this just proves how much damage the munchie crew are doing to those who need the help as I can't see anyone claiming to be dying of EDS related complications anymore and not roll my eyes and assume its just one more attention seeker added to the pot.
Any help looking into this one would be appreciated folks
Thank you for doing this! I was going to offer my own pic if anyone needed a reference. Mine look exactly like this too. I am now middle-aged and still do not need those braces. Again, sorry to PL but I think this is important to know for perspective when munchies are munchin'.So like I wanted to share of what I think of when these munchies are all 'oh mai fingers are so hypermobile' And I thought this might be helpful to some folks here? Slightly powerlevel. These are my crotch fruit's extremely hypermobile fingers.
I'll spoiler them because some people find em a bit disturbing
View attachment 998938
View attachment 998939
This kid uses no splints despite all these munchies needing them for their slight hyper-extensions.
For some reason the quote thingie is not working but omg that dancing for dementia video haaaahahahahaha
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Dancing for dementia awareness
dancing for dementia and this is a remarkable situation because I couldn’t get my whole right side to work or even figure out how to walk ! I’ve had a lot of...www.youtube.com
I would hope that if I ever did something like this, my kids would take me in hand and delete that shit off of Youtube with a quickness.