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HOW on earth is EDS or any other CTD not the soil in which ME flourishes?

Hip

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You seem to be very knowledgeable
Not really, I don't know much about EDS, I've only looked into it a little bit because of newly-discovered CCI connection to ME/CFS. So unfortunately I would not be able to tell you whether your medical symptoms might be indicative of EDS.
 

lauluce

as long as you manage to stay alive, there's hope
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Not really, I don't know much about EDS, I've only looked into it a little bit because of newly-discovered CCI connection to ME/CFS. So unfortunately I would not be able to tell you whether your medical symptoms might be indicative of EDS.
Thank you anyway!
 

bread.

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It's good that a study is examining the prevalence. The study seems to confirm previous estimates of the prevalence of hEDS being around 1 in 5000.

This new study found that 10 out of every 5000 people have either EDS or joint hypermobility syndrome (JHS).

JHS is now an old classification, but it says here that most people with JHS will fit into the new classification of hypermobility spectrum disorder (HSD).

And it says here that HSD is a diagnosis given to people when they do not meet the strict diagnostic criteria for EDS or hEDS, but nevertheless have some joint hypermobility. So HSD is a mild form of EDS.

The study is mixing people with true EDS (which includes hEDS — around 90% of those with EDS will have the hEDS variety) with people with the milder condition of HSD.


So it's not immediately clear from the results section of the study what percentage of the population have EDS, because their figure of 10 on 5000 has combined EDS with HSD. However, the study says this:


So it looks like 87% of he people they considered had HSD, and 13% had EDS.

So this works out to around 1 in 5000 having EDS. Which is in line with previous estimates, but this study provides actual data to support the estimate. So I think we can now be more confident in saying that around 1 in 5000 have EDS.

The study also says:


So you may start off being HSD, but you may get worse so that you later become hEDS.

Wow, you really did it again. I am out of here.
 

Hip

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Wow, you really did it again. I am out of here.
Did what again?

It took me a while to read through that study on your behalf, and summarize the results in my above post. I am actually not that interested in this subject, but I read through the paper because you asked me about it. I would expect at least a "thank you" for my efforts, rather than "I am out of here" because there's something that you don't like.
 

lauluce

as long as you manage to stay alive, there's hope
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https://osf.io/qwn5h/?fbclid=IwAR0gh7fIvb-psFxKx_TtVfnetxQPhfnUtPfr-kSss370j8Q4W-SbEUktkRI

41% of me/cfs patients have a positive beighton for heds, but of course, I am sure there is a way out of this conclusion for some.
Hi Bread, sorry if my question is out of place. Do you believe there might be variants of EDS that haven't yet been identified? Particularly, I'm interested in the possibility of there being a condition defined by anomalies in collagen but that doesn't manifest itself as hypermobility/hiperflexibility but in perhaps more subtle ways such as fragile connective tissue, prone to injury. Thanks!