I’m finding more confusing why they think that better diagnostic techniques and more research into all these conditions is causing them? Surely better everything means more diagnosis over time which is a positive thing for all suffering with these things? It’s this insidious idea that people pretend to be ill to avoid work - nope we would rather be working than living off the scraps fed to us by government!
reminds me of when i was having chronic pain as a kid and my pediatrician wouldn’t really investigate so my mom took me to boston children’s, where i was diagnosed with fybro and pots. The doctor referred me to physical therapy and even said i might need a cane if i went untreated.
We went home after this and when my mom spoke to my doctor about it, he flatly denied my diagnosis. Small town pediatrician thinks he knows better than specialists at boston children’s. Many such cases.
I’m a long time reader, having followed from Instagram to substack but first time I’m feeling compelled to chime in. I have pots cfs and a couple of nds. I think you’d might find the work of patty gently interesting. She runs the bloomers network. In addition to the things you’ve mentioned — hEDS, POTS, MCAS, migraine, IBS, autism and ADHD — is giftedness, a neurologically distinct thing of its own, and they all do tend to cluster. Patty researches this stuff and runs a bloomers Facebook group where lots of people chime in about their experiences with this and share research. The group is geared toward gifted and 2e, primarily autism and adhd. Could be a useful connecting point. She’s an interesting person who I’ve spoken with over zoom on one occasion
It's certainly not psychosomatic but it seems like the modern conceptualisation of POTS, at least in the form we know today, seems to have a relatively short history, information that might be crucial to solving the riddle of its cause. The emergence and disappearance of diseases is one of the best clues we have to unlock the etiology of diseases. For example, if people argued that COVID19 has always existed, on the basis of its similarity to other coronaviruses, we never would have narrowed its origins to either a wet market or a lab leak. Lead poisoning also comes to mind.
Of course, it may have a long thread that really be can traced back through neurasthenia and the vapours. But, I wouldn't exclude the idea that it's more recent.
Real diseases often rise and fall in frequency, and new diseases emerge. Arguing a real disease has a long consistent history can be counter productive and can lead to people overlooking more recent causes. The most obvious examples would be environmental toxins and iatrogenic causes. I know several cases of a POTS-like syndrome emerging for anticonvulsant treatment.
I’m finding more confusing why they think that better diagnostic techniques and more research into all these conditions is causing them? Surely better everything means more diagnosis over time which is a positive thing for all suffering with these things? It’s this insidious idea that people pretend to be ill to avoid work - nope we would rather be working than living off the scraps fed to us by government!
Haven’t got the energy to watch the video yet but saved for later! You’ll find this interesting: https://www.healthrising.org/blog/2023/10/12/septad-chronic-fatigue-syndrome-pots-long-covid-kaufman-ruhoy/
i haven’t gotten through even half of this but PHOBIA OF FAINTING? they really are just saying shit
reminds me of when i was having chronic pain as a kid and my pediatrician wouldn’t really investigate so my mom took me to boston children’s, where i was diagnosed with fybro and pots. The doctor referred me to physical therapy and even said i might need a cane if i went untreated.
We went home after this and when my mom spoke to my doctor about it, he flatly denied my diagnosis. Small town pediatrician thinks he knows better than specialists at boston children’s. Many such cases.
I’m a long time reader, having followed from Instagram to substack but first time I’m feeling compelled to chime in. I have pots cfs and a couple of nds. I think you’d might find the work of patty gently interesting. She runs the bloomers network. In addition to the things you’ve mentioned — hEDS, POTS, MCAS, migraine, IBS, autism and ADHD — is giftedness, a neurologically distinct thing of its own, and they all do tend to cluster. Patty researches this stuff and runs a bloomers Facebook group where lots of people chime in about their experiences with this and share research. The group is geared toward gifted and 2e, primarily autism and adhd. Could be a useful connecting point. She’s an interesting person who I’ve spoken with over zoom on one occasion
Great information and on a very important riddle.
It's certainly not psychosomatic but it seems like the modern conceptualisation of POTS, at least in the form we know today, seems to have a relatively short history, information that might be crucial to solving the riddle of its cause. The emergence and disappearance of diseases is one of the best clues we have to unlock the etiology of diseases. For example, if people argued that COVID19 has always existed, on the basis of its similarity to other coronaviruses, we never would have narrowed its origins to either a wet market or a lab leak. Lead poisoning also comes to mind.
Of course, it may have a long thread that really be can traced back through neurasthenia and the vapours. But, I wouldn't exclude the idea that it's more recent.
Real diseases often rise and fall in frequency, and new diseases emerge. Arguing a real disease has a long consistent history can be counter productive and can lead to people overlooking more recent causes. The most obvious examples would be environmental toxins and iatrogenic causes. I know several cases of a POTS-like syndrome emerging for anticonvulsant treatment.