This week's EDSociety Drama
Lots of interesting commentary on the EDS Society recently on Twitter.
My #1 issue with them (out of a few) is still that despite looking for & requesting links to the relevant research, etc, 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. The EDSoc can't point to scientific reasons why they believe the people who meet their hEDS-criteria-PDF actually have a different condition than people who don't (not to even mention the lack of scientific backing of the criteria).
Folks, that's NOT how you science
The great thing about Twitter is how many scientists/ researchers, doctors, and advocates have joined patients in having discussions & sharing information & resources. Even the fancy science people (who aren't on the EDS board, which seems to be a key distinction) have these concerns. It's not just patients.
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! Is just.. not scientifically backed and seems absurd.
And even what at first seems like a reasonable critique, that hEDS/JHS was looked at together in this study-- is actually the only way you could really even do it. I'll share some tweets that explain:
Frankly, I think the Society's opinion on this is too obviously biased to even matter.
@ me when y'all provide some evidence for your claims, EDSoc. Until then, I've lost my ability to take you very seriously at all.
My #1 issue with them (out of a few) is still that despite looking for & requesting links to the relevant research, etc, 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. The EDSoc can't point to scientific reasons why they believe the people who meet their hEDS-criteria-PDF actually have a different condition than people who don't (not to even mention the lack of scientific backing of the criteria).
Folks, that's NOT how you science
The great thing about Twitter is how many scientists/ researchers, doctors, and advocates have joined patients in having discussions & sharing information & resources. Even the fancy science people (who aren't on the EDS board, which seems to be a key distinction) have these concerns. It's not just patients.
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! Is just.. not scientifically backed and seems absurd.
And even what at first seems like a reasonable critique, that hEDS/JHS was looked at together in this study-- is actually the only way you could really even do it. I'll share some tweets that explain:
Some thoughts: Tinkle et al 2009 argued that JHS and EDS-HT were clinically indistinguishable. For the next few years, research referred to JHS/EDS-HT to highlight that they were considered to be one and the same thing. https://t.co/4308wzQhy1 pic.twitter.com/KXSc57oypn— Lisa Jamieson (@LoveInYourTummy) November 6, 2019
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
So, a study looking at longitudinal data, literally can only use what diagnosises people had during that time. And yeah, perhaps they could have *only* looked at hEDS, but why? The actual difference between hEDS/HSD/JHS has not actually been shown via any science, and likey whether a doctor wrote down JHS or hEDS on the patients paperwork was likely more a factor of their own education than the patient themselves. The paper wasn't seeking 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, regardless of which **clinically interchangeable** term the doctors chose to write down.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
Frankly, I think the Society's opinion on this is too obviously biased to even matter.
@ me when y'all provide some evidence for your claims, EDSoc. Until then, I've lost my ability to take you very seriously at all.
