This is great, check my post history, I've been beating this drum for many years now. hEDS is very very very under-diagnosed and this one simple fact is sufficient to explain a the prevalence of a whole zoo of seemingly unrelated conditions. There is an incentive to keep hEDS as a 'rare' disease as the US has extra grants for disease in this classification and this has put pressure on diagnostic criteria which was made more strict so fewer people would be diagnosed with it.
I'm about to head out for lunch so this will have to be a shorter post but I'll touch on some of the major points.
* The progression of prevalence of hEDS over the years has gone from 1/50K, 1/15k, 1/5k, to 1/500 which is insane. Most people are using values from older studies so they think it is much rarer than it actually is.
* I don't see a strong distinction between hEDS and HSD, diagnosis appears to be mainly a matter of severity but due to that being rather random there isn't a clear distinction.
* The TNXB gene is overlooked because too many people have SNPs here and the assumption of the rarity of hEDS rules it out. It seems that number and type of TNXB SNPs as well as other RCCX genes also govern severity.
* If you look at long covid information the proportion of those who have hEDS/HSD is far higher than it should be. Dr Jessica Eccles has great research on this, I think the obvious explanation here is far more people have hEDS/HSD than have been diagnosed with it, and these conditions create a strong predisposition to ME/CFS/LongCovid.
* Average time to diagnosis is 20 years from the onset of symptoms, which is insane, but it gets worse when you consider that the vast majority with it never get diagnosed, so the average is really never.
I have a rather severe form of this and even I would have a hard time getting diagnosed with hEDS - I look too healthy. I've never been formally diagnosed but have a Whole Genome Sequence with the expected TNXB SNPs. Things that I've tried and worked;
* Low Dose Naltrexone (LDN) is a great start (mentioned here in the pdf)
* Supplemental T3 as sub-clinical hypothyroidism is pretty common
* I think a combination of weak ligands like Modafinil and Amitriptyline can really help with dysautonomia
* I take low dose of semiglutide and this seems to help with the auto-immune aspect
* I take Ipa/ModGRF(no dac), BPC157/TB5, and VIP
* High dose TUDCA and high dose DIM
* Supplemental testosterone
* Zero sugar diet, including no fruit. I basically subsist on kale salads and steak.
I’ve had mono but not Lyme. My initial symptoms predated mono and started from infancy - but I’m on the very severe end of the spectrum. Most people don’t get hit with it until their 20s and 30s.
hEDS - Hypermobile Ehlers-Danlos Syndrome, I think. "Hypermobile Ehlers-Danlos syndrome (hEDS) is a heritable connective tissue disorder that causes generalized joint hypermobility, joint instability, and chronic pain."
HSD - Hypermobility spectrum disorder. "Hypermobility spectrum disorders are a group of heritable connective tissue disorders where joints are flexible enough to cause problems such as instability and pain."
In practice HSD is was an evolution away from benign hypermobility so it’s generally considered not to cause issues beyond the physical discomfort.
hEDS is considered too rare and to actually diagnose someone with it would mess up their health insurance for a condition doctors don’t believe can be treated. So they avoid diagnosing it which creates prevalence data that feeds back into the initial assumptions.
My view of HSD is that it is just a milder hEDS and all the other problems still exist even if most are not detectable. Most people spend their lives being told nothing specific is wrong with them and how are they to know better, after all doesn’t everyone get tired from time to time. Because I’m good at stats I was able to figure out that either I’m the unluckiest person ever or there is a common cause.
I would have loved a more readable format at least. It's lumping groups of issues together and it's hard to track specific conditions to their source paper and other details.
I've been learning a lot about this sort of thing. I was diagnosed with ADHD in 2020 or so, and just the past August was also diagnosed with celiac. It seems that there's some pretty strong correlation between the two.
Autism and ADHD are a (deep) habit of the attention.
A habit of moving the attention in a way that is possibly unhealthy, unuseful and probably discordant to what's common and normal.
One solution is to change that habit with drugs or therapy.
Another solution is to gain a greater understanding of your attention. Thus gaining a new freedom to move your attention in whatever way, rather than suffering the governance of habit.
The meditation people (Buddhists etc) study attention. They have some impressive methods and such. It's worth looking.
Calling autism and ADHD "habits of attention" severely understates what's going on. These are neurodevelopmental conditions with substantial genetic and neurobiological components, not patterns someone can think their way out of. That framing has done real damage to people who delayed treatment because they believed they just needed more discipline or insight. Meditation can be a useful complement for some people, but it's not an alternative to addressing the underlying neurochemistry. By saying so you are hurting real people with real problems.
I think it can help you relax. A lot of meditation involves focus on breathing, can keep your heart rate down, etc., and I think that may be good for general health.
But I don't think it should be confounded with medical advice or treated as causal to neurodiversity or called mandatory. Probably why that person is getting downvoted.
On the off-chance that psychosomatic suggestibility is on this list, I'm not even looking at it.
This is a stark reminder why you use LaTex or typst with a good template for typesetting your scientific contributions.
Unless you learned basic typography that is.
This eyesore looks like it was done in Word & Co.
What a pity, given what a treasure trove this is.
As someone with a partner who has ADHD I think this should be mandatory reading for any GP.
Extremely important information. Other connective tissue disorders can also present with these findings.
Hypermobility can lead to Osteoarthritis in later life also.
This is great, check my post history, I've been beating this drum for many years now. hEDS is very very very under-diagnosed and this one simple fact is sufficient to explain a the prevalence of a whole zoo of seemingly unrelated conditions. There is an incentive to keep hEDS as a 'rare' disease as the US has extra grants for disease in this classification and this has put pressure on diagnostic criteria which was made more strict so fewer people would be diagnosed with it.
I'm about to head out for lunch so this will have to be a shorter post but I'll touch on some of the major points.
* The progression of prevalence of hEDS over the years has gone from 1/50K, 1/15k, 1/5k, to 1/500 which is insane. Most people are using values from older studies so they think it is much rarer than it actually is.
* I don't see a strong distinction between hEDS and HSD, diagnosis appears to be mainly a matter of severity but due to that being rather random there isn't a clear distinction.
* The TNXB gene is overlooked because too many people have SNPs here and the assumption of the rarity of hEDS rules it out. It seems that number and type of TNXB SNPs as well as other RCCX genes also govern severity.
* If you look at long covid information the proportion of those who have hEDS/HSD is far higher than it should be. Dr Jessica Eccles has great research on this, I think the obvious explanation here is far more people have hEDS/HSD than have been diagnosed with it, and these conditions create a strong predisposition to ME/CFS/LongCovid.
* Average time to diagnosis is 20 years from the onset of symptoms, which is insane, but it gets worse when you consider that the vast majority with it never get diagnosed, so the average is really never.
I have a rather severe form of this and even I would have a hard time getting diagnosed with hEDS - I look too healthy. I've never been formally diagnosed but have a Whole Genome Sequence with the expected TNXB SNPs. Things that I've tried and worked;
* Low Dose Naltrexone (LDN) is a great start (mentioned here in the pdf)
* Supplemental T3 as sub-clinical hypothyroidism is pretty common
* I think a combination of weak ligands like Modafinil and Amitriptyline can really help with dysautonomia
* I take low dose of semiglutide and this seems to help with the auto-immune aspect
* I take Ipa/ModGRF(no dac), BPC157/TB5, and VIP
* High dose TUDCA and high dose DIM
* Supplemental testosterone
* Zero sugar diet, including no fruit. I basically subsist on kale salads and steak.
If you’re willing to share:
Do you know your EBV/Lyme statuses?
History of other infections, and/or flu-like symptoms, low-level or otherwise?
I’ve had mono but not Lyme. My initial symptoms predated mono and started from infancy - but I’m on the very severe end of the spectrum. Most people don’t get hit with it until their 20s and 30s.
hEDS - Hypermobile Ehlers-Danlos Syndrome, I think. "Hypermobile Ehlers-Danlos syndrome (hEDS) is a heritable connective tissue disorder that causes generalized joint hypermobility, joint instability, and chronic pain."
HSD - Hypermobility spectrum disorder. "Hypermobility spectrum disorders are a group of heritable connective tissue disorders where joints are flexible enough to cause problems such as instability and pain."
In practice HSD is was an evolution away from benign hypermobility so it’s generally considered not to cause issues beyond the physical discomfort.
hEDS is considered too rare and to actually diagnose someone with it would mess up their health insurance for a condition doctors don’t believe can be treated. So they avoid diagnosing it which creates prevalence data that feeds back into the initial assumptions.
My view of HSD is that it is just a milder hEDS and all the other problems still exist even if most are not detectable. Most people spend their lives being told nothing specific is wrong with them and how are they to know better, after all doesn’t everyone get tired from time to time. Because I’m good at stats I was able to figure out that either I’m the unluckiest person ever or there is a common cause.
"This resource is intended as an introductory primer for primary care clinicians"
Anybody have a more non-medical-background summary?
I would have loved a more readable format at least. It's lumping groups of issues together and it's hard to track specific conditions to their source paper and other details.
It's part of the current of poor quality research around autism and ADHD, often conflating them into unique condition Audhd.
I think AuDHD is meant to describe having both Autism and ADHD, not conflating them into a single condition
That is correct.
I've been learning a lot about this sort of thing. I was diagnosed with ADHD in 2020 or so, and just the past August was also diagnosed with celiac. It seems that there's some pretty strong correlation between the two.
Autism and ADHD are a (deep) habit of the attention.
A habit of moving the attention in a way that is possibly unhealthy, unuseful and probably discordant to what's common and normal.
One solution is to change that habit with drugs or therapy.
Another solution is to gain a greater understanding of your attention. Thus gaining a new freedom to move your attention in whatever way, rather than suffering the governance of habit.
The meditation people (Buddhists etc) study attention. They have some impressive methods and such. It's worth looking.
Calling autism and ADHD "habits of attention" severely understates what's going on. These are neurodevelopmental conditions with substantial genetic and neurobiological components, not patterns someone can think their way out of. That framing has done real damage to people who delayed treatment because they believed they just needed more discipline or insight. Meditation can be a useful complement for some people, but it's not an alternative to addressing the underlying neurochemistry. By saying so you are hurting real people with real problems.
I don't think it understates it. I think that reality is basically made of habit. Habit is a bigger deal than you think.
What do meditation people do with their great powers of attention? Besides for naval gazing of course.
I think it can help you relax. A lot of meditation involves focus on breathing, can keep your heart rate down, etc., and I think that may be good for general health.
But I don't think it should be confounded with medical advice or treated as causal to neurodiversity or called mandatory. Probably why that person is getting downvoted.
What do all the jungle civilizations and any possible intelligent extraterrestrial life do?
Stay away from us to their own benefit, of course.
They study it, thus gaining a better understanding of it.
They become more familiar with it, thus replacing habit with intelligence.
This leads to increased power and freedom, among other things.