Selon le #gouvernement, les #ATER ne font pas de recherche! Page 8 point n°46 de la réplique du #gouvernement à la réclamation du #SAGES au #CEDS :
https://le-sages.org/CEDS/Observations_gouvernement.pdf #RIPEC @Eurodoc @NewsTankEduc @AEFsuprecherche @Le_Figaro @MarianneleMag

#CNESER 2023 : Communiqué du #SAGES https://le-sages.org/CNESER2023/Communique_SAGES_CNESER2023.pdf #PRAG #PRCE #ESAS #RIPEC #CEDS

Le #SAGES a rappelé au #MESR que sa réclamation au #CEDS est l'élément essentiel de la visibilité des #PRAG et #PRCE dans l'#ESR et perdurera dans la décision à venir quelle que soit la réplique du gouvernement français à ce recours (mi juin 2023) https://le-sages.org/documents/CR_audience_MESR_1juin2023.pdf

I don't have EDS. My spouse, however, does. It is very likely that my child does too - she's definitely hypermobile. Spouse was diagnosed hEDS, but if they were diagnosed today there is a good chance they'd consider classical.

I am grateful for the knowledge that my child has EDS because there are actions we can take and decisions we can make to protect her. It's impossible to prevent deterioration, but we can at least protect her from some childhood damage that won't be repairable. It also lets us better understand some of her issues (e.g., writing and holding a pen).

My spouse was not diagnosed until their early 30's, though signs were available as young as early childhood.

Doctors are taught that EDS is a rare disease and some were actively taught to not diagnose it (the whole 'zebras' thing). There are rare forms of EDS (at least by the arbitrary scheme the EDS society perpetuates), but hEDS is likely very common and highly underdiagnosed.

The modern medical establishment is not made to deal with complex, life-long conditions. Combined with the fact that a small number of "experts" are gatekeepers to what is considered a valid case and what isn't and you have a major problem with anything more complex than a common cold. We can deal with some chronic conditions (e.g., mild asthma, diabetes), but once it becomes somewhat complicated it often gets written off or you get passed around until you find a decent doctor.

When a small number of "professionals" write the rules with little accountability or input from patient communities, you inevitably get conflicts of interest.

This is the case with other conditions (e.g., Autism, ADHD, Long COVID, etc.) as well.

Anyways, if you're Neurodivergent (or suspect you are) and tend to be very flexible, have very young looking and / or stretchy skin, lots of joint pain issues, frequently dislocate joints, etc. it might be worth researching hEDS and associated issues.

#Neurodivergent #ActuallyAutistic #EDS #hEDS #cEDS