A woman at my church suffered and died slowly of Huntington's after having nursed her own mother through the same illness. The sheer ethical abandon of faking that tragic disease for attention and money actually makes me angry.
agreed - i first heard about this disease in the book Genome by Matt Ridley . As i recall from that book, the disease is entirely genetically deterministic. Its so horrifying.
What I've come to realize is that, while everyone will say that Kiwi Farms is bad because of the doxxing, they actually hate it because of the mockery. The other site is pure, unrepentant doxxing and no one wants it down. No one cares enough, even those whose information is there. What they don't like is that KF laughs at them.
In Keffals' case, there might also be receipts showing a history of hitting on underage trans-identified teens. I think this is likely but I'm not motivated to descent into the depths of the Farms to confirm.
Keffals also operated a massive grift in the wake of that original police call - the one described as "swatting" - that was so profitable, you almost have to wonder if Keffals set themselves up? I know that sounds bonkers, but so is this whole story!
Regardless, it's worth remembering that Keffals' overall business model is to leverage various beefs and feuds for exposure and thus monetary gain. It's a peculiarly internet-sick way to make a living, relying on precisely the toxic dynamics that ostensibly outrage Keffals. People like Keffals *need* the very worst aspects of the internet and social media. Without ongoing dumpster fires, they'd freeze to death, professionally speaking.
People have gotten on Jesse's case for alluding to its existence, so I don't want to name or hint at its name here. But there's another site that's just about doxxing and basically nothing else.
Geneticist here. While I will withhold judgement on Samantha/jades specific case, Yes, it is possible for Huntington to appear in families with no prior history.
Huntington is known to exhibit a property called “anticipation” which means that over the generations, the severity of the disease tends to get worse and worse. This is because there is a bias towards more and more mutations causing the gene involved (called “huntingtin”, aptly) to get more and more messed up.
This also means that in some cases, a person who has only mild symptoms or has a sub clinical case could have a kid with full blown huntingtons disease.
(Physician perspective; not a neurologist). New sporadic cases of Huntington's do arise. However, I don't know what would prompt anyone to run a test for it in a patient without a family history. Ordering a Huntington's test is a bigger deal than the average lab work I order; it is not something that is done lightly.
Besides the movement disorder and dementia, the first manifestation is often psychiatric. However, there are a lot of more common causes for psychiatric illness and just because someone is irritable I would not order a test for a genetic disease without a family history.
Apparently there is such a thing as deep brain stimulation for Huntington's, but this is very experimental and at best would be a way to manage symptoms, as this does not do anything about the underlying neurodegeneration.
My understanding of Huntington’s is that it is autosomal dominant. If you have a parent with the disease, you have a one in two chance of getting it yourself. My information for this is based entirely on Woody Guthrie and his son Arlo. Arlo was lucky enough to get the good gene instead.
But I also know, as a carrier of a cystic fibrosis mutation, that the dominant/recessive scheme is oversimplified for CF. At least some men with a CF mutation are sterile due to a congenital lack of the vas deferens. There’s also a pretty robust emerging literature on how having a single mutation can result in relatively subtle effects - lung and sinus problems, for instance, which are subtle relative to what patients with full-blown cystic fibrosis live with, but can still significantly affect health of the carrier.
If you are willing to further explain what is going on with these subclinical cases of Huntington’s, I would be keenly interested to learn.
It’s autosomal dominant, but the (more unusual) factor that makes it worsen with each generations is that the mutated gene contains a number of repeats of a particular sequence and the gene accrues more repeats across generations. The number of repeats is associated with the severity of disease, and disease onset. (I’m not a clinician, nor a geneticist, but have a Master’s in a life science discipline and a lifelong interest in this kind of thing.)
Thank you! This is very interesting. I did a little further reading (Wikipedia ftw) and was interested to see that the increase in the undesirable repeats of the sequence is more likely to occur in sperm than in eggs.
I also read that about 1 in 10 cases arise through a new mutation - a fact that gives a little credence to Jade's tale, although the preponderance of evidence still weighs against her.
Yes, it is autosomal dominant once it appears. This is simply because only one mutant copy of the gene is needed to cause disease. Once you have it, then you have a 50% chance of passing that mutant gene on.
However, the mutation in the gene is a specific type, called a tandem repeat mutation. This is where there are a bunch of repeats and that's what causes the disease. These repeats tend to get longer and longer each generation due to mutational bias towards more repeats. And the longer the repeats the worse or more severe (and usually earlier onset) the disease is.
The specific case of Huntington's that Katie referenced from This American Life episode appeared to be a subclinical case in a dad (who was very old and had some cognitive decline) with a son who ends up inheriting a worse form of Huntington's, but still mild enough not to be totally obvious that's what he had (part of the mystery of the episode is what is the cause of the doctor's erratic behavior, turns out SPOILER it was Huntington's disease).
While this is a terrible disease that I'd gladly banish from the earth if I had the power, it's nonetheless extremely interesting to see how the basic dominant/recessive framework we learned in school is more complex in action. Thank you!
How many podcasts about Kiwi Farms and I still don’t understand it. I nowout anything that has to do with weird extremely online subcultures because I find them incomlrehensible. It’s like reading about a mating ritual on Mars that involves tesseracts.
In a nutshell: Kiwifarms is a forum where people are allowed to post rude and insulting things using rude and insulting language. Their subject matter is internet personalities and there are rules against talking about yourself and your personal experience. But it IS allowed to post as much information about featured internet personalities as possible, including their real-world identity, address, and other information. There are, I think, some fair questions to be asked about what exactly it is that the forum users here expect people to do with this information - posting someone's address on the internet is often read as a kind of threat against them. However, the main real-world allegations against KiwiFarms are not about users using this doxxing information to say, show up at someone's house (the closest I've seen to an allegation of this is all of the messy, weird stuff in the Keffals story - hacking food delivery services), but rather that the mean-ness of the contents of this forum causes suicides. There are least two individuals who are brought up as examples of such suicides, but the causal link there is not exactly clear. The implied story is: KiwiFarms featured a forum thread where the individual in question was being criticized. That individual found this forum of strangers eviscerating their online persona. Said individual kills themself as result.
The things at stake in the KiwiFarms story:
1) are people allowed to criticize social media personalities (even if they are trans? even if they appear to have a mental illness?)?
2) what is the difference between sustained and antagonistic criticism and bullying? (but also, what do we do about "internet bullying" between adults, anyway?)
3) it's bad to doxx people, but it's also bad to post all your info online for people to easily find it. Which is worse?
4) should we completely boot a forum from the internet because they use insensitive language? How about because they gather information posted to public places on the internet?
5) is this group a dangerous, coordinated cadre of transphobes and white-supremacists?
Great summary. To me it's absurd to say "KiwiFarms swatted me" or "KiwiFarms threatened me". It's an internet forum, a message board. It's not an organisation and it can't act corporately. Pretty much anyone can subscribe and post to it. If someone with a KF account does something bad irl how is that the responsibility of KF any more than the misdeeds of a Barpod subscriber are Katie and Jesse's fault?
I’m telling on myself here by saying that my firm algorithmic seat on messytok lets me know that while Carrie/Samantha didn’t fundraise, she did set up a website when her tiktok went viral where she said she was 3D printing disability aids and providing materials to set up sensory rooms for disabled people. There are a bunch of angry disabled people/caregivers of disabled people on tiktok who claim they have never received their items and that Carrie/Samantha has ghosted them. So it seems she did have a grift, it just wasn’t the gofundme kind.
Such a lack of imagination. These days all she needed to do was sell her services as an inspirational speaker, the corporate world would have had her fully booked for years to come. And with her amazing synthetic speech engine to replace her lost voice, she could have also generated each speaking engagement and just sat back and counted the money.
As with the Jack Monroe episode, I’m always slightly in awe of the balls required for bullshittery of this calibre.
How long was she planning to continue this grift (though I’m not sure where the grift is, is she being paid for “speaking” engagements?) - was she going to be miraculously cured by the experimental treatment or just move away again and invent a new persona? This sort of con must have been so much easier before the internet.
I don't know. Internet allows people thousands of miles away to chuck some cash into your GoFundMe bucket. I think the internet has created this class of scammer.
I just wish some of them were fun. “My country has been taken over by a tyrant. Please help me buy this meteor fragment so I can forge it into a sword to fight on the side of justice. Also when I was born thirteen bald eagles flew in a circle over the hospital and each one carried the state flower of one of the original thirteen colonies in its beak. I am the prophesied king of America and upset my favorite political party lost.”
I’d send some random exuberant crazy person ten dollars to make a meteor sword as long as they made a YouTube video and at least made a good faith effort to pretend a meteor was used.
Instead it’s all just “I’m mister burns from that Simpsons episode where he has every illness possible. Who will look after my cat after I pass on? I don’t understand household finances at all.”
You know what? It was really sad. But he rallied. He died a fews weeks ago, and I’m surprised at how hard it’s been. I’m 55 but I feel like a little kid.
I guess there are more barriers to entry to older-school cons. Anyone mentally ill with internet access could run anything up the public flagpole these days, it would just be up to us to be savvy and call them on it. That's why I hate the idea that criticizing certain things is taboo.
One reason the "I did the posts" guy might have wanted to launder his post through an American is that you can actually go to jail for mean tweets in England and some other neighboring countries. Cancel culture etc. aside, we Americans don't know how good we have it thanks to the First Amendment.
Yeah I sort of agree, I see Jesse's point that there's been some bad and naive journalism around the issue which is concerning and why I listen to this podcast, but at this point I fear Barpod is helping to turn this rando into a celebrity, and inadvertently seeming to give "props" to a sort of funny in theory but probably ultimately toxic website. Katie's point that broadcasting your comings and goings gives the lie to complaints about being stalked and harassed is just a generally great one and to really get it you probably need to have all these details, so I've been patient. But I've stopped worrying if I missed anything re Keffals.
The trouble with steering clear of stories involving "crazy" people is that, in the absence of expert testimony, journalists aren't qualified to say whether someone is mentally ill. All they can do is report what a person does, and in this case the person hoodwinked thousands of people. That kind of activity should be investigated and exposed, regardless of her mental state. It is kind of odd that she didn't use her position to raise a lot of money; maybe that's the surest sign that she's mentally unwell.
Not looking to excuse anything, but there’s a detail in the Northern Echo article that I don’t think made it to the podcast. She had lost a baby at four months old just before the surrogacy thing happened. If she is, as it appears, a bit nuts then this might be part of the cause.
I hadn't read that article yet. Knowing that she's capable of very elaborate and persuasive scams, I can't help wondering if the pregnancy, crib death, and/or grief over this were also faked.
I’m sure this was the plot of one of the dodgy Australian soaps in the 1990s.
Seriously though, I enjoyed this episode immensely.
Apart from the accents, which are a war crime. Even setting aside that Katie‘s accent is in no sense Irish, you wouldn’t need an Irish accent to read from the Northern Echo which is from my bit of the world. And Yorkshire/Geordie are almost certainly beyond Katie‘s capabilities.
A woman at my church suffered and died slowly of Huntington's after having nursed her own mother through the same illness. The sheer ethical abandon of faking that tragic disease for attention and money actually makes me angry.
I agree with Katie that the related This American Life episode is stunningly good: https://www.thisamericanlife.org/492/dr-gilmer-and-mr-hyde
Ohm. I remember that one. So good.. Man. TAL used to be anazing
agreed - i first heard about this disease in the book Genome by Matt Ridley . As i recall from that book, the disease is entirely genetically deterministic. Its so horrifying.
That is heartbreaking to hear.
What I've come to realize is that, while everyone will say that Kiwi Farms is bad because of the doxxing, they actually hate it because of the mockery. The other site is pure, unrepentant doxxing and no one wants it down. No one cares enough, even those whose information is there. What they don't like is that KF laughs at them.
In Keffals' case, there might also be receipts showing a history of hitting on underage trans-identified teens. I think this is likely but I'm not motivated to descent into the depths of the Farms to confirm.
Keffals also operated a massive grift in the wake of that original police call - the one described as "swatting" - that was so profitable, you almost have to wonder if Keffals set themselves up? I know that sounds bonkers, but so is this whole story!
Regardless, it's worth remembering that Keffals' overall business model is to leverage various beefs and feuds for exposure and thus monetary gain. It's a peculiarly internet-sick way to make a living, relying on precisely the toxic dynamics that ostensibly outrage Keffals. People like Keffals *need* the very worst aspects of the internet and social media. Without ongoing dumpster fires, they'd freeze to death, professionally speaking.
the "other site"? I am late and dumb.
People have gotten on Jesse's case for alluding to its existence, so I don't want to name or hint at its name here. But there's another site that's just about doxxing and basically nothing else.
You didn't miss anything, really; Jesse declined to name it on the show.
You think that Carrie’s sister Samantha is the bad one? You haven’t even MET their other 2 sisters Charlotte and Miranda.
The key to an Irish accent is to remember that "forty-third" is pronounced "farty-turd"
Geneticist here. While I will withhold judgement on Samantha/jades specific case, Yes, it is possible for Huntington to appear in families with no prior history.
Huntington is known to exhibit a property called “anticipation” which means that over the generations, the severity of the disease tends to get worse and worse. This is because there is a bias towards more and more mutations causing the gene involved (called “huntingtin”, aptly) to get more and more messed up.
This also means that in some cases, a person who has only mild symptoms or has a sub clinical case could have a kid with full blown huntingtons disease.
(Physician perspective; not a neurologist). New sporadic cases of Huntington's do arise. However, I don't know what would prompt anyone to run a test for it in a patient without a family history. Ordering a Huntington's test is a bigger deal than the average lab work I order; it is not something that is done lightly.
Besides the movement disorder and dementia, the first manifestation is often psychiatric. However, there are a lot of more common causes for psychiatric illness and just because someone is irritable I would not order a test for a genetic disease without a family history.
Apparently there is such a thing as deep brain stimulation for Huntington's, but this is very experimental and at best would be a way to manage symptoms, as this does not do anything about the underlying neurodegeneration.
My understanding of Huntington’s is that it is autosomal dominant. If you have a parent with the disease, you have a one in two chance of getting it yourself. My information for this is based entirely on Woody Guthrie and his son Arlo. Arlo was lucky enough to get the good gene instead.
But I also know, as a carrier of a cystic fibrosis mutation, that the dominant/recessive scheme is oversimplified for CF. At least some men with a CF mutation are sterile due to a congenital lack of the vas deferens. There’s also a pretty robust emerging literature on how having a single mutation can result in relatively subtle effects - lung and sinus problems, for instance, which are subtle relative to what patients with full-blown cystic fibrosis live with, but can still significantly affect health of the carrier.
If you are willing to further explain what is going on with these subclinical cases of Huntington’s, I would be keenly interested to learn.
It’s autosomal dominant, but the (more unusual) factor that makes it worsen with each generations is that the mutated gene contains a number of repeats of a particular sequence and the gene accrues more repeats across generations. The number of repeats is associated with the severity of disease, and disease onset. (I’m not a clinician, nor a geneticist, but have a Master’s in a life science discipline and a lifelong interest in this kind of thing.)
Thank you! This is very interesting. I did a little further reading (Wikipedia ftw) and was interested to see that the increase in the undesirable repeats of the sequence is more likely to occur in sperm than in eggs.
I also read that about 1 in 10 cases arise through a new mutation - a fact that gives a little credence to Jade's tale, although the preponderance of evidence still weighs against her.
Yes, it is autosomal dominant once it appears. This is simply because only one mutant copy of the gene is needed to cause disease. Once you have it, then you have a 50% chance of passing that mutant gene on.
However, the mutation in the gene is a specific type, called a tandem repeat mutation. This is where there are a bunch of repeats and that's what causes the disease. These repeats tend to get longer and longer each generation due to mutational bias towards more repeats. And the longer the repeats the worse or more severe (and usually earlier onset) the disease is.
The specific case of Huntington's that Katie referenced from This American Life episode appeared to be a subclinical case in a dad (who was very old and had some cognitive decline) with a son who ends up inheriting a worse form of Huntington's, but still mild enough not to be totally obvious that's what he had (part of the mystery of the episode is what is the cause of the doctor's erratic behavior, turns out SPOILER it was Huntington's disease).
While this is a terrible disease that I'd gladly banish from the earth if I had the power, it's nonetheless extremely interesting to see how the basic dominant/recessive framework we learned in school is more complex in action. Thank you!
You’re right I’m drunk, will fix
How many podcasts about Kiwi Farms and I still don’t understand it. I nowout anything that has to do with weird extremely online subcultures because I find them incomlrehensible. It’s like reading about a mating ritual on Mars that involves tesseracts.
In a nutshell: Kiwifarms is a forum where people are allowed to post rude and insulting things using rude and insulting language. Their subject matter is internet personalities and there are rules against talking about yourself and your personal experience. But it IS allowed to post as much information about featured internet personalities as possible, including their real-world identity, address, and other information. There are, I think, some fair questions to be asked about what exactly it is that the forum users here expect people to do with this information - posting someone's address on the internet is often read as a kind of threat against them. However, the main real-world allegations against KiwiFarms are not about users using this doxxing information to say, show up at someone's house (the closest I've seen to an allegation of this is all of the messy, weird stuff in the Keffals story - hacking food delivery services), but rather that the mean-ness of the contents of this forum causes suicides. There are least two individuals who are brought up as examples of such suicides, but the causal link there is not exactly clear. The implied story is: KiwiFarms featured a forum thread where the individual in question was being criticized. That individual found this forum of strangers eviscerating their online persona. Said individual kills themself as result.
The things at stake in the KiwiFarms story:
1) are people allowed to criticize social media personalities (even if they are trans? even if they appear to have a mental illness?)?
2) what is the difference between sustained and antagonistic criticism and bullying? (but also, what do we do about "internet bullying" between adults, anyway?)
3) it's bad to doxx people, but it's also bad to post all your info online for people to easily find it. Which is worse?
4) should we completely boot a forum from the internet because they use insensitive language? How about because they gather information posted to public places on the internet?
5) is this group a dangerous, coordinated cadre of transphobes and white-supremacists?
Great summary. To me it's absurd to say "KiwiFarms swatted me" or "KiwiFarms threatened me". It's an internet forum, a message board. It's not an organisation and it can't act corporately. Pretty much anyone can subscribe and post to it. If someone with a KF account does something bad irl how is that the responsibility of KF any more than the misdeeds of a Barpod subscriber are Katie and Jesse's fault?
Yeah, Kiwi Farms is confusing for the first-time tourist; the Kiwians speak a curious dialect and their local customs take time to learn.
That said, with a bit of effort I found a HUGE stockpile of Nicole Cliffe scoop so...
KF is full of some incredibly witty people.
Glad I’m not the only one. I feel like a fossil
I’m telling on myself here by saying that my firm algorithmic seat on messytok lets me know that while Carrie/Samantha didn’t fundraise, she did set up a website when her tiktok went viral where she said she was 3D printing disability aids and providing materials to set up sensory rooms for disabled people. There are a bunch of angry disabled people/caregivers of disabled people on tiktok who claim they have never received their items and that Carrie/Samantha has ghosted them. So it seems she did have a grift, it just wasn’t the gofundme kind.
Such a lack of imagination. These days all she needed to do was sell her services as an inspirational speaker, the corporate world would have had her fully booked for years to come. And with her amazing synthetic speech engine to replace her lost voice, she could have also generated each speaking engagement and just sat back and counted the money.
Seems her racket was scamming the arts community. (Fellowships? Writing prizes?)
To be cynical, playing the disability/minority card can really work.
https://twitter.com/StJohnsTheatre/status/1501310777839472643
I am somewhat horrified that she claims to have a spouse?
Neurodiverse?
Why am I not a grifter yet? No story seems to be too dumb that people will buy into it.
I find myself wondering the same thing. Having a conscience is so limiting!
Take all of my money. How can i lose?
As with the Jack Monroe episode, I’m always slightly in awe of the balls required for bullshittery of this calibre.
How long was she planning to continue this grift (though I’m not sure where the grift is, is she being paid for “speaking” engagements?) - was she going to be miraculously cured by the experimental treatment or just move away again and invent a new persona? This sort of con must have been so much easier before the internet.
I don't know. Internet allows people thousands of miles away to chuck some cash into your GoFundMe bucket. I think the internet has created this class of scammer.
I just wish some of them were fun. “My country has been taken over by a tyrant. Please help me buy this meteor fragment so I can forge it into a sword to fight on the side of justice. Also when I was born thirteen bald eagles flew in a circle over the hospital and each one carried the state flower of one of the original thirteen colonies in its beak. I am the prophesied king of America and upset my favorite political party lost.”
I’d send some random exuberant crazy person ten dollars to make a meteor sword as long as they made a YouTube video and at least made a good faith effort to pretend a meteor was used.
Instead it’s all just “I’m mister burns from that Simpsons episode where he has every illness possible. Who will look after my cat after I pass on? I don’t understand household finances at all.”
And all the illnesses cancel each other out so Mr Burns survives? My dad lived that way for years.
That is very sad depending on how well they canceled out.
You know what? It was really sad. But he rallied. He died a fews weeks ago, and I’m surprised at how hard it’s been. I’m 55 but I feel like a little kid.
I’m so sorry. I have a really complicated relationship with my dad but can’t imagine that day. God be with you all.
I guess there are more barriers to entry to older-school cons. Anyone mentally ill with internet access could run anything up the public flagpole these days, it would just be up to us to be savvy and call them on it. That's why I hate the idea that criticizing certain things is taboo.
It's much easier to sell your illness or poverty through curated social media than to people who see you every day.
One reason the "I did the posts" guy might have wanted to launder his post through an American is that you can actually go to jail for mean tweets in England and some other neighboring countries. Cancel culture etc. aside, we Americans don't know how good we have it thanks to the First Amendment.
Katie will be sober because she's a devout muslim, jesse you bigot!
Oh god, it’s going to turn into ‘I am Spartacus’.
Please no more Keffals stuff. At this point you’re just feeding trolls, surely.
Yeah I sort of agree, I see Jesse's point that there's been some bad and naive journalism around the issue which is concerning and why I listen to this podcast, but at this point I fear Barpod is helping to turn this rando into a celebrity, and inadvertently seeming to give "props" to a sort of funny in theory but probably ultimately toxic website. Katie's point that broadcasting your comings and goings gives the lie to complaints about being stalked and harassed is just a generally great one and to really get it you probably need to have all these details, so I've been patient. But I've stopped worrying if I missed anything re Keffals.
Swede here. We are not Switzerland.
I thought it was Switzerland where there is assisted suicide
There’s are degrees of medical assisted death. Dignitas in Switzerland is technically suicide: patient must initiate the fatal dosage.
Belgium and Netherlands have legal euthanasia. Doctors are allowed to administer a lethal dosage. Canada has MAID - https://www.canada.ca/en/health-canada/services/medical-assistance-dying.html
Whoa. Stupid autocorrect
Next, you'll expect us to believe that you're also not Swaziland.
'Murica is onto your trickery. Fool us once.... ;)
Not to mention poor Switzen and Swederland. Two lovely but unappreciated countries!
The trouble with steering clear of stories involving "crazy" people is that, in the absence of expert testimony, journalists aren't qualified to say whether someone is mentally ill. All they can do is report what a person does, and in this case the person hoodwinked thousands of people. That kind of activity should be investigated and exposed, regardless of her mental state. It is kind of odd that she didn't use her position to raise a lot of money; maybe that's the surest sign that she's mentally unwell.
Not looking to excuse anything, but there’s a detail in the Northern Echo article that I don’t think made it to the podcast. She had lost a baby at four months old just before the surrogacy thing happened. If she is, as it appears, a bit nuts then this might be part of the cause.
I hadn't read that article yet. Knowing that she's capable of very elaborate and persuasive scams, I can't help wondering if the pregnancy, crib death, and/or grief over this were also faked.
Wouldn’t rule it out, but it was presented as mitigation at trial. That’s a bit more serious than lying in a dodgy TikTok video.
You all know this is what Woody Guthrie died from
Grifting?
Katie says she will be sober on tour; Jesse: "You and I have very different understandings of what our goals are on this this tour."
We need to know if “sober” includes weed.
And, she may change her mind after the first show.
I’m sure this was the plot of one of the dodgy Australian soaps in the 1990s.
Seriously though, I enjoyed this episode immensely.
Apart from the accents, which are a war crime. Even setting aside that Katie‘s accent is in no sense Irish, you wouldn’t need an Irish accent to read from the Northern Echo which is from my bit of the world. And Yorkshire/Geordie are almost certainly beyond Katie‘s capabilities.