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

Hip

Senior Member
Messages
17,824
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
Messages
591
Location
argentina
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.

Senior Member
Messages
499
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

Senior Member
Messages
17,824
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
Messages
591
Location
argentina
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!
 

Hip

Senior Member
Messages
17,824
@Hip funny nothing came back from you regarding this finding.

Going by what you said earlier, in your view, there's no such thing as ME/CFS or hEDS in any precise sense, because you believe the diagnostic criteria for these conditions are far too vague, so nobody can ever be reliably diagnosed with either of these conditions.

So when you refer to 41% of ME/CFS patients meeting the criteria for hEDS, presumably from your perspective that is a meaningless statement, because you believe both ME/CFS and hEDS are so imprecisely defined that nobody really knows what they are, and nobody really knows whether a given patient may have these diseases.



By the way, according to MEpedia, for the study you quoted:
A Swedish study of 234 ME/CFS patients meeting the Canadian Consensus Criteria found that 49% of patients had hypermobility and 20% met the criteria for hEDS.
 

bread.

Senior Member
Messages
499
Going by what you said earlier, in your view, there's no such thing as ME/CFS or hEDS in any precise sense, because you believe the diagnostic criteria for these conditions are far too vague, so nobody can ever be reliably diagnosed with either of these conditions.

So when you refer to 41% of ME/CFS patients meeting the criteria for hEDS, presumably from your perspective that is a meaningless statement, because you believe both ME/CFS and hEDS are so imprecisely defined that nobody really knows what they are, and nobody really knows whether a given patient may have these diseases.



By the way, according to MEpedia, for the study you quoted:

:)