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

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Kate Farms Shill dijo:
Surely I wasn't really really hoping you'd look into it and give your opinion. Perish the thought. :lol:
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Let me dig a bit more. It honestly could be as simple as they had a chip with promise and were just typical MD/academic types who don’t understand the regulatory environment so it tanked. The fact they had a ‘propriety platform’ is a red flag, that’s what theranos did (we have a chip, no you can’t check it, it works only in our magic box!’ I deal with companies like this daily, and they’re mainly just startups that will never really get past the second round of funding but let me dig. Not sure I’ll find more than you, but will try
 
Kate Farms Shill dijo:
Yeahhh that's tricky. I don't know much about this one but does she have like a group of adult men saying gross shit about the child? If so maybe people could frame it to focus on mom and the audience she's creating rather than the exploitation itself, like how the Million Pity thread focuses on discussing (and righteously doxing) the video operators and the clients and does not archive the graphic animal abuse itself.

There was a similar situation years back with, I think, Desmond is Amazing! Some poster started to do a deep dive into the weird men who were following the kid's account and found that so many of them were posting really gross provocative pictures of children. IIRC some were even open "MAPs". That poster did post what he found to the forum uncensored (not graphic porn obvs) and all their posts got taken down by admin because of it. So even that you would have to tread lightly and accept that to protect the decency of the children you'd lose much of the proof that this was happening.

What a nightmare.
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Good idea. There are a bunch of obvious pedophiles in her comment section (the gross comments get removed quickly but the same scum post more than once so she doesn't block when she deletes) and some replies hint that there might be more photos, or some other Wren 'appreciation' going on with these oxygen thieves. 🤮
I didn't want to chase that shit down but I guess I can always try to wash the filth off me afterwards....
 
So, I am just getting to the end of new KFS drop.

Yes, DNA sequencing technology has moved on a lot, compared to the time taken, accuracy, and pricing. So, for example, you can look at old reference genomes and they have references with the base ranges listed, because this group contributed bases x-y and so forth. These days, you can sequence entire megabases of DNA at once to pretty good accuracy (cf 10x or ONT r10 though not sure the latter does megabases yet).

But, there is a vast difference between sequencing technology moving on and DNA based diagnostics having moved on. The relationship between genotype and phenotype is not as clear cut as those who deal in sequencing data would wish. There is only so far sequence data alone can get you if you don't have clinical/phenotypic data to back it up. Especially if you're only going at read level, because then you'll never detect something like a frame shift error (something that impact the amino acid and therefore protein a gene is coding for). I'm assuming he's talking about sequencing reads, ie. segments of DNA, because he specifically mentions sequencing data rather than SNP chips, i.e. the microarrays @Otterly mentioned above, because at least in my circles we wouldn't refer to that as genomic data, as he does in his description.

We have a really good understanding of certain parts of the human genome, but most of it we just don't. We have a few "complete" assemblies and loads of data relating to really important genes as you can make bank in developing medicines around understanding exactly what those do at the molecular level and thus how they can go wrong. Mitchondrial DNA would be easier, at least to my eyes as a non-human person, but I don't think its "solved" to any degree. Plus if it was, he would put references to the relevant papers or something, so probably just ignore me I just wanted to sperg.

eta: v quick google, this and it said it was doing cannabis and various cannabis pathogen research. They had done some neurology stuff at the same time. That is super weird to me, cannabis and human are diploid but other than that I don't think they have much in common genomically, genetically, or phenotypically.

edit 2: strike all of that cos i got to where i left off in KFS's post and found out everything i wrote is irrelevant, its quite clearly some sort of microarray, they describe it as a gene panel.
 
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Otterly dijo:
Let me dig a bit more. It honestly could be as simple as they had a chip with promise and were just typical MD/academic types who don’t understand the regulatory environment so it tanked. The fact they had a ‘propriety platform’ is a red flag, that’s what theranos did (we have a chip, no you can’t check it, it works only in our magic box!’ I deal with companies like this daily, and they’re mainly just startups that will never really get past the second round of funding but let me dig. Not sure I’ll find more than you, but will try
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Ehhh, my strong suspicion (medfag with genetics background) is that it was always a scam. I had also never heard of Courtagen, and the fact that they had zero ties with any of the big players in either mitochondrial disease or autism are also massive red flags. The combination of mitochondrial disease and autism is also nothing short of bizarre. They really aren't related, aside from being complicated to diagnose.

The pivot to medical cannabis is also. . .telling.
 
There are some rare microdeletion syndromes that come with autism-like behaviors, but to my (admittedly superficial) knowledge those syndromes don’t involve mitochondria.

I also don’t see the point of genetic testing (outside research) for conditions without meaningful treatment directly tied to the anomaly but I guess that’s another discussion.
 
Dr. Nick Riviera dijo:
Ehhh, my strong suspicion (medfag with genetics background) is that it was always a scam. I had also never heard of Courtagen, and the fact that they had zero ties with any of the big players in either mitochondrial disease or autism are also massive red flags.
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Yeah, I’m not seeing any outright fraud, there’s the usual funding rounds and I’ve not gone through who funded them. Glassdoor is about the same as most tiny biotechs (a mix of insanity and liked it.)
What stands out is that they don’t have a focus - they have a proprietary platform (big red flag) and they have a scattergun approach to what they look at. Usually you’ll get a company specialising, so for example they will have a few retinal disease panels or skin disease panels and work with known entities like patient advocacy etc to push for KOLs to use their panel in research and trials. From there it’s easy to get insurance on board to reimburse.
Here they seem to have all the usual munchie things in a few different chips - but a lot of that stuff is very speculative so really these chips would only be good for fishing expedition type stuff. There’s no focus. Their only market would be the kind of docs who you can buy a diagnosis from and they won’t be spending a few k on an array and genetic reporting.

If anyone is able to get me details of their actual arrays (like, what’s on them) I’d be able to say more. Usually such companies list out what’s in their chip and they don’t which is also a red flag.
I did look at the medical cannabis site and was amused by the names of the kits - Grim Reefer (TM) amused me.
So yeah, I’m not seeing the markers of outright fraud, more a speculative fishing expedition to become the go to chip for your munchie dreams. Trouble is that’s not a big market nor is it one insurance will fund.
The small biotech scene in New England is a bit weird. There are a LOT of little places that aren’t really a scam per se but more of a very long shot with a mediocre idea behind it, competing for funding and spending it in not very much (perhaps that counts as an outright scam, it’s opportunistic at best.)
I asked at work and nobody had heard of them.
@Zemblan Physics the reasons would be to confirm a specific diagnosis if there’s doubt as to what it is (which there often is in genetic syndromes) , or if there are for example two closely related conditions that need different management. So cystic fibrosis got tested for even before there was effective treatment, there were things you can do help a little even if no actual treatment like there is now (now there’s specific treatment for a specific variant.) you might also test for a couple who want kids - does the partner also have the allele if it’s recessive, etc. there can be value in it even if there’s no cure or effective treatment at the end.
Stuff like autism for example - generic autism no there’s not much point. If you know the child has something like Rett Syndrome that does change things even though there’s very little treatment. There’s also often specific support available for these rarer things wrt patient support groups etc or admittance to trials.
 
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It wouldn’t surprise me if there’s something wrong with Kate Beckinsale. An ED is almost a given at this point but there could quite conceivably be other things.

Her father, Richard died very young (31) of a heart attack but with underlying conditions that sped up his coronary artery disease. He always looked thin and pale. I don’t think Kate has great genes.
 
Suspicious Activity dijo:
It wouldn’t surprise me if there’s something wrong with Kate Beckinsale. An ED is almost a given at this point but there could quite conceivably be other things.

Her father, Richard died very young (31) of a heart attack but with underlying conditions that sped up his coronary artery disease. He always looked thin and pale. I don’t think Kate has great genes.
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Porridge was a brilliant show. He was a good looking guy and apparently a decent one as well. She looks a lot like him. I’m willing to give her the benefit of the doubt in this one - it must be something that hangs over you as well, death of a parent so young from something potentially I heritable
 
It's Long COVID Awareness Day, so let's take a look at some of the women whose brains were completely broken by the hysteria around the disease.

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Otterly dijo:
Fantastic timing.
Thread '‘Long COVID’ doesn’t exist as we know it, according to new research'
https://kiwifarms.net/threads/long-...-we-know-it-according-to-new-research.186498/
As we’ve said all along, it’s a mix of malingering, hysteria and a few cases of regular post viral syndrome
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I lost a friend to Long Covid. By which I mean to say, we aren't friends anymore. She's somehow permanently disabled and completely unable to work, yet also drives 300 miles to take her kid to competitive swim meets out of state. Funny how that works.

The best part is that she never had covid. We both had a virus at the same time in March 2020. Same symptoms, same timing, when we knew it was going around. I took a covid test and it was negative. I believed it. She took a covid test and it was negative. She didn't. It's been four years of shifting diagnoses - everything from MCAS to small fiber neuropathy - consultations with quack docs who cater to munchies, and negative testing for fucking everything under the sun. She has settled on "permanent brain injury" as a result of covid and is making more on full disability than she did while she was working.

But she was never sick.
 
It’s interesting to me how the long covid women all describe their former lives as being very busy and full of activities and responsibilities. They seem to be victims of black and white thinking wherein they can’t just ease off the gas a little, they have to take to their beds with ultra super mega real plague. I think if they could admit that they had bitten off more than they could chew, they wouldn’t feel the need to justify themselves by inventing chronic illnesses (consciously or subconsciously).

Like just tell your family that you need some help and stop committing for every PTA and club soccer fundraiser. There’s no shame in simplifying your schedule a tad. There IS shame in ruining your children’s childhood over a fake condition.
 
blue gopher snakes dijo:
It’s interesting to me how the long covid women all describe their former lives as being very busy and full of activities and responsibilities.
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I think you’ve hit the nail on the head there. The women I know with CFS were like this as well. I think a lot of women now are absolutely run ragged. I know I am. Demanding job, housework, multiple kids. It’s a lot. I have eased back on every outside obligation I can and I still feel spread too thin. Saying that is not really socially acceptable but being physically ill is. I’m lucky in that I have a man who does his share but I can imagine that for some of these women, they’re burned out. And for some, they find it’s much better to have everyone else do stuff rather than get back up and keep going.

This is why ritualised behaviour around illness can be a good thing. A woman who gets put in bed and looked after for the ritual thirty days or whatever gets the break and the time limit to it to get back up and keep going. We do not allow recovery time these days. I’m very careful if one of my team goes off with a cold to tell them to not rush back, take a few days, not just ‘I can stand and type I’m fine.’
 
Otterly dijo:
I have eased back on every outside obligation I can and I still feel spread too thin.
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Off topic but I feel called to remind everyone that you're allowed to say "no" and you don't have to give an explanation. Even if you think "but no one else can do x,y,z!" someone else will and it will be okay.
 
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