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A Collection of Chronic Medical Conditions Common in Autistic and ADHD Adults [pdf] (2023)

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Re: A Collection of Chronic Medical Conditions Common in Autistic and ADHD Adults [pdf] (2023)

#51

Post by estimator7292 »

analog8374 wrote: post #19
IncreasePosts wrote: post #18

Earlier quoted context omitted.

What do meditation people do with their great powers of attention? Besides for naval gazing 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.

You should study autism and the people around you instead of your own navel. Clearly you don't at all understand what it is to be autistic or ADHD.

Have you ever tried talking to an autistic person?

Re: A Collection of Chronic Medical Conditions Common in Autistic and ADHD Adults [pdf] (2023)

#52

Post by cjbgkagh »

Aurornis wrote: post #43
cjbgkagh wrote: post #12

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 ma…

> hEDS is very very very under-diagnosed Ehlers-Danlos syndrome is severely over-diagnosed right now by providers who are unqualified to diagnose it, a few charlatans who sell incorrect diagnoses as a specialty to serve a demand, and scores of TikTokers who think they understand better than the specialists. > and this one simple fact is sufficient to explain a the prevalence of a whole zoo of seemingly unrelated cond…

I added the HSD to the hEDS and gave my reasons for doing so. The figure for hEDS+HSD (1). I'm not the only person to do this (2). The classification was made more strict in 2017 where only 15% of those previously diagnosed with hEDS maintained that definition with the new criteria (3). So is it 1/3100 to 1/5000 with the new 2017 criteria? Well revert that one change and you get 1/456 to 1/750 which is pretty close to 1/500. And let's not forget it did start at 1/50K so the 1/5K is one order of magnitude and 1/500 is another. So I think the history of being off by at least an order of magnitude in the past is important here.

Names of papers:

1. Diagnosed prevalence of Ehlers-Danlos syndrome and hypermobility spectrum disorder in Wales, UK: a national electronic cohort study and case–control comparison.

2. The lack of clinical distinction between the hypermobility type of Ehlers‐Danlos syndrome and the joint hypermobility syndrome (a.k.a. hypermobility syndrome).

3. Utilization of the 2017 diagnostic criteria for hEDS by the Toronto GoodHope Ehlers–Danlos syndrome clinic: A retrospective review

I know doctors would rather make out that this is a social phenomena and not gross medical incompetence but the reality is way more people have hEDS than have been diagnosed with it, someone is far more likely to find out they have hEDS from TikTok than they are from a doctor. Doctors are not doing their job.

Re: A Collection of Chronic Medical Conditions Common in Autistic and ADHD Adults [pdf] (2023)

#53

Post by Aurornis »

cjbgkagh wrote: post #52
Aurornis wrote: post #43

Earlier quoted context omitted.

> hEDS is very very very under-diagnosed Ehlers-Danlos syndrome is severely over-diagnosed right now by providers who are unqualified to diagnose it, a few charlatans who sell incorrect diagnoses as a specialty to serve a demand, and scores of TikTokers who think they understand better than the specialists. > and this one simple fact is sufficient to explain a the prevalence of a whole zoo of seemingly unrelated cond…

I added the HSD to the hEDS and gave my reasons for doing so. The figure for hEDS+HSD (1). I'm not the only person to do this (2). The classification was made more strict in 2017 where only 15% of those previously diagnosed with hEDS maintained that definition with the new criteria (3). So is it 1/3100 to 1/5000 with the new 2017 criteria? Well revert that one change and you get 1/456 to 1/750 which is pretty close t…

> I added the HSD to the hEDS and gave my reasons for doing so. The figure for hEDS+HSD (1). I'm not the only person to do this (2).

Sorry, but you’re just sharing bad information.

The prevalence of hEDS is not 1:500 by any reasonable source.

I know I won’t convince you because your posts have many layers of information sourced from the alternative medicine world of TikTok and TikTok-adjacent sickfluencers, but I hope I can at least convince other people reading this to pursue higher quality sources and be skeptical of HN commenters who make claims about under-diagnosis based on conspiracy theories.

Re: A Collection of Chronic Medical Conditions Common in Autistic and ADHD Adults [pdf] (2023)

#54

Post by Aurornis »

FrustratedMonky wrote: post #5

"This resource is intended as an introductory primer for primary care clinicians" Anybody have a more non-medical-background summary?

This document would never be taken seriously by any good medical professional.

The website it’s hosted on is trying to sell neurodiversity trainings to businesses. They link to YouTube videos of their webinars when they cite their “lived experiences” as their background credentials.

This is really bad information. I suggest not getting involved in this side of medical misinformation that springs primarily from parts of social media but is being dressed up as if it’s just a helpful medical resource.

Re: A Collection of Chronic Medical Conditions Common in Autistic and ADHD Adults [pdf] (2023)

#55

Post by cjbgkagh »

Aurornis wrote: post #53
cjbgkagh wrote: post #52

Earlier quoted context omitted.

I added the HSD to the hEDS and gave my reasons for doing so. The figure for hEDS+HSD (1). I'm not the only person to do this (2). The classification was made more strict in 2017 where only 15% of those previously diagnosed with hEDS maintained that definition with the new criteria (3). So is it 1/3100 to 1/5000 with the new 2017 criteria? Well revert that one change and you get 1/456 to 1/750 which is pretty close t…

> I added the HSD to the hEDS and gave my reasons for doing so. The figure for hEDS+HSD (1). I'm not the only person to do this (2). Sorry, but you’re just sharing bad information. The prevalence of hEDS is not 1:500 by any reasonable source. I know I won’t convince you because your posts have many layers of information sourced from the alternative medicine world of TikTok and TikTok-adjacent sickfluencers, but I hop…

The prevalence of hEDS + HSD is widely accepted to be 1/500 in medical research, that's not controversial. The only thing slightly controversial about my position is that I think they are fundamentally they are the same thing, a distinction without a difference. The 2017 criteria used to distinguish is rather arbitrary and is itself rather controversial. You have to use this criteria if you want to get the 1/3100 to 1/5000 numbers. And remember it was 1/15K back in the 2000s, that's a half an order of magnitude right there. I did make a mistake, I forgot that it originally started at 1/150K back in the 60s, where I had it starting at 1/50K. With numbers like that you can see a clear trend.

Re: A Collection of Chronic Medical Conditions Common in Autistic and ADHD Adults [pdf] (2023)

#56

Post by Aurornis »

nkoren wrote: post #15

On the off-chance that psychosomatic suggestibility is on this list, I'm not even looking at it.

Good intuition. This document isn’t real medical research from medical professionals. It’s from a group of people soliciting donations and trying to sell neurodiversity trainings for organizations.

This comes from a part of social media where medical conditions are redefined in ways that make them sound more broad, generic, vague, and common than they really are. This is why this corner of the internet diagnoses themselves with many of these conditions together: The definitions they believe are like horoscopes where anyone who has non-specific symptoms or even psychosomatic conditions can match the definitions given. The result is groups of people on TikTok or Facebook groups who all think they have a list of 5 different medical conditions and who are all frustrated that actual specialists for those conditions won’t agree with their self diagnoses.

Re: A Collection of Chronic Medical Conditions Common in Autistic and ADHD Adults [pdf] (2023)

#57

Post by Aurornis »

cjbgkagh wrote: post #55
Aurornis wrote: post #53

Earlier quoted context omitted.

> I added the HSD to the hEDS and gave my reasons for doing so. The figure for hEDS+HSD (1). I'm not the only person to do this (2). Sorry, but you’re just sharing bad information. The prevalence of hEDS is not 1:500 by any reasonable source. I know I won’t convince you because your posts have many layers of information sourced from the alternative medicine world of TikTok and TikTok-adjacent sickfluencers, but I hop…

The prevalence of hEDS + HSD is widely accepted to be 1/500 in medical research, that's not controversial. The only thing slightly controversial about my position is that I think they are fundamentally they are the same thing, a distinction without a difference. The 2017 criteria used to distinguish is rather arbitrary and is itself rather controversial. You have to use this criteria if you want to get the 1/3100 to…

I responded to your post above which said this:

> * The progression of prevalence of hEDS over the years has gone from 1/50K, 1/15k, 1/5k, to 1/500 which is insane.

The prevalence of hEDS is not 1/500. I am not using outdated criteria, I am using the currently accepted numbers.

I'm really not interested in this conversation where you introduce conspiracy theories or try to act like you were talking about different conditions.

Re: A Collection of Chronic Medical Conditions Common in Autistic and ADHD Adults [pdf] (2023)

#58

Post by Aurornis »

wizzwizz4 wrote: post #30
nkoren wrote: post #15

On the off-chance that psychosomatic suggestibility is on this list, I'm not even looking at it.

Psychosomatic suggestibility is not on the list. These are also all chronic conditions, so if the descriptions don't match your history, you have nothing to worry about.

Unfortunately this document and the linked YouTube videos uses the social media definitions of these conditions, so readers could be misled into thinking they have conditions which they don’t.

The article is really bad. I do not suggest anyone take it seriously.

Re: A Collection of Chronic Medical Conditions Common in Autistic and ADHD Adults [pdf] (2023)

#59

Post by cjbgkagh »

Aurornis wrote: post #57
cjbgkagh wrote: post #55

Earlier quoted context omitted.

The prevalence of hEDS + HSD is widely accepted to be 1/500 in medical research, that's not controversial. The only thing slightly controversial about my position is that I think they are fundamentally they are the same thing, a distinction without a difference. The 2017 criteria used to distinguish is rather arbitrary and is itself rather controversial. You have to use this criteria if you want to get the 1/3100 to…

I responded to your post above which said this: > * The progression of prevalence of hEDS over the years has gone from 1/50K, 1/15k, 1/5k, to 1/500 which is insane. The prevalence of hEDS is not 1/500. I am not using outdated criteria, I am using the currently accepted numbers. I'm really not interested in this conversation where you introduce conspiracy theories or try to act like you were talking about different co…

You seem to be stuck on this point. We agree that going by the 2017 diagnostic criteria for hEDS people are only diagnosed at a rate of 1/3100 to 1/5000.

But I ask;

* What’s the prevalence of HSD?

* Is there a meaningful difference between hEDS and HSD, i.e. how does one tell them apart except by severity?

* And would a history of 1/150K (1960s) to 1/50K (1980s) to 1/15K (1990s) to 1/5K (2000s) not suggest a prior history of under diagnosis? How can you be so sure that this time they have it right?

Re: A Collection of Chronic Medical Conditions Common in Autistic and ADHD Adults [pdf] (2023)

#60

Post by Aurornis »

olyjohn wrote: post #31
bluefirebrand wrote: post #8

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.

I was noticing the other day how my pollen allergies would subside when I took some Adderall, and would come back when it wore off. I looked it up and there are actually correlations between allergies and ADHD. I'm not sure if Celiac is the same kind of allergy or not, but I thought it was interesting.

> I was noticing the other day how my pollen allergies would subside when I took some Adderall, and would come back when it wore off.

The explanation is much more simple: Adderall is amphetamine, which has functional overlap with how pseudoephedrine (aka Sudafed) works. They are both norepinephrine releasing agents.

Pseudoephedrine is considered a substituted amphetamine in chemistry lingo.

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