Lots of interesting commentary on the EDS Society (TEDS) recently on Twitter.
My #1 issue with them (out of a few) is still that, despite looking for & requesting links to the relevant research, there appear to be NO published materials justifying their 2017 distinction between hEDS vs HSD.
The lack of scientific reasoning & validation is why many researchers and doctors don’t agree with the 2017 hEDS/HSD distinction. TEDS can’t point to any science that supports the idea that the people who meet their hEDS criteria actually have a different condition than people who don’t, yet they insist that they do!
That’s… not how you science?!
The great thing about Twitter is how scientists/researchers, doctors, advocates and patients can come together to have discussions and sharing information & resources. And if you join in the #EDS community on twitter, you quickly come to learn that even the fancy science people (who aren’t on the EDS board, a key distinction) have concerns about the validity of this distinction. It’s not just patients, and not just HSD patients who are upset at being excluded, or whatever nonsense thing people over on IG were saying.
And SO, that they are so quick to say, NUH UH, WE’RE RARE! THE STUDY SHOWING OTHERWISE IS WRONG AND SUCKS AND WE’RE TELLING THE REST OF SCIENCE THAT YOU’RE WRONG AND REFUSING TO PLAY BY THE RULES WE MADE UP! Is just.. not scientifically backed, and thus seems quite absurd.
And, while at first it seems like a reasonable critique of said study to point out that hEDS/JHS was looked at together and thus can’t have meaning– is more than what it seems. Because in fact, doing the study that way was the only way it could actually be done. I’ll share some tweets that explain:
So, if I understand your argument correctly – because the 2017 criteria cannot be applied retroactively, the study isn’t valid.— Linda_T 🇨🇦 (@t7_linda) November 6, 2019
So….we can’t do any research unless its from 2017 forward? That’s a big fucking problem, obviously
This is very confusing. Obviously if you want to look at a long span of time with the same criteria, it has to be the older criteria. And “when considered together” is even in the EDS opinion. JHS has stricter criteria than HSD. Why is this objectionable?— Charlotte (@HSDExplainsALot) November 6, 2019
Yes, exactly. No way to assess prevalence without using it. All research and nearly every expert prior to 2017 combined JHS/hEDS. In 2017, everything changed—without rational explanation. I smell politics/funding not science.— JeanneWrites (@JeanneMcArdle) November 6, 2019
In 2017, with the publication of the new classification, the Tinkle et al paper:
— Lisa Jamieson (@LoveInYourTummy) November 6, 2019
“Hypermobile Ehlers–Hypermobile Ehlers–Danlos Syndromeos Syndrome Type III and Ehlers–Danlos Syndrome Hypermobility Type): Clinical Description and Natural History”
said this: pic.twitter.com/QMIKxCvhiU
So, based on what is already in the published literature, I don’t understand that response at all
— Lisa Jamieson (@LoveInYourTummy) November 6, 2019
🤷♀️🤷♀️🤷♀️🤷♀️🤷♀️
So, a study looking at longitudinal data, literally can only use what diagnosises people had during that time. And during that time, the same people who have now declared that hEDS is definitely very different than JHS(/HSD) and is actually rare, were then saying that JHS and hEDS were common and interchangeable. So, doctors were using them interchangably. So, you can’t honestly distinguish between the terms being used and expect them to represent any meaningful data. Whether a doctor wrote down JHS or hEDS on the patients paperwork was likely more a factor of their own education or preference than anything about the patient themselves.
The paper’s purpose wasn’t to see how often doctors were coding for hEDS, it was trying to see how frequently hEDS/HSD patients were getting picked up by the doctors at all, regardless of which clinically interchangeable term the doctors chose to write down.
Frankly, I think the Society’s opinion on this is too obviously biased to even matter but their excessively aggressive response is quite telling.
@ me when y’all provide some evidence for your claims, TEDS. Until then, I’ve lost my ability to take you very seriously at all.
