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Alright, so when I got diagnosed with Ehlers-Danlos I figured I’d find the peak advocacy group and lobby for better diagnostic processes and condition management
At first I was just pleased to find a snazzy website and a community to chat with. But after a bit more than a year, I am disillusioned with @TheEDSociety. I have many questions
I will try to explain some of what those issues and questions in this thread
1. Some ppl living with EDS are deeply opposed to Andrea and Antonio Bulbena’s research. Eg. An alleged neurocognitive phenotype’ of anxiety for hEDS. https://twitter.com/karriehiggins/status/1184446425201070081
2. Christina Bloom (partner of EDS Society CEO & President Lara Bloom) teaching kids with EDS to sing “we’re feeling blue” https://twitter.com/allylovespono/status/1182138015319089153?s=21
3. Details of sign up for a Purdue paediatric analgesia trial was posted on the EDS Society website. EDNF previously took Purdue sponsorship in 2011 after some Purdue executive went to jail in 2007. The EDS Society files IRS forms as EDNF. https://twitter.com/asher_wolf/status/1182488025936228352?s=21
4. Questions about the commercialisation of EDS Society HEDGE study genomic data: Eg. Involvement of DeepGesalt facial imaging, questions about if there’s involvement of board/sponsors & investments. Ppl have been pulling out of the study https://twitter.com/asher_wolf/status/1184721514756628480?s=21
5. Questions about EDNF sponsoring a study of ‘CINK’, which claims it’s “corrective neuro kinetics”: results and data never publicly released. EDS Society CEO Bloom says money will be invested in the future in a “similar study” https://twitter.com/katimcf/status/1183934490147770370?s=21
6. Dr Clair Francomano was given $500k EDS Society grant. She’s also a ‘science advisor’ to Kyani (a supplement marketer) and wrote a book on ‘energy medicine’ https://twitter.com/asher_wolf/status/1182321498020700160?s=21
7. Questions about the old EDNF website to @theedsociety resulted in an alleged FBI report https://twitter.com/asher_wolf/status/1184679976798285824?s=21
8. The EDS Society promoting CBD on the orgs website and getting a kickback from sales https://twitter.com/katimcf/status/1183979363072647174?s=21
9. The EDS Society frames ppl with EDS as patients, but we are ppl first. Nothing about us without us is a hollow catch cry if we are not heard https://twitter.com/asher_wolf/status/1182100436825722880?s=21
10. Questions put to the EDS Society have received a number of highly defensive answers, half answers, silence and requests to privately email them.
11. Medical research obsessions promoted by particular practitioners listed on the EDS Society website lead to treatment outcomes where only the ppl who fit their model (and have financial ability to afford it) get appropriate treatment. Patients who flounder get dropped
13. The fear is that the classification of what exactly EDS is has been shaped, moulded and deformed by researchers’ scholarly obsessions and medtech-type investments that are using ppl with EDS as a research pool.
