https://twitter.com/user/status/1896328150868775296 Extremely severe ME gastroparesis almost total paralysis muscles dying can't eat can't swallo w can't digest can't move almost can't speak soon can't use phone can't communicate help please France. Find me a doctor I beg you #pwme #mecfs dont let them torture me again please
https://twitter.com/user/status/1896331333569568769 I'm using my last energy to write this please please please Last time I was alone. I can't have this happen again. Being tortured for months in mistreating hospitals letting me die of starvation and awful conditions for pwME please, humanity, care, help. Beg you
@Jaybee00 as you’re still on Xitter I suggest checking the thread to see if Millions Missing France are aware of this
Saw this—maybe millions missing France doesn’t have an @? https://twitter.com/user/status/1896330647373045994 @MEActNet @MEActNetUK @MMissingGermany @MMissingHolland @MMissingAus @MMDublin @MEActNNE @IrishMECFSAssoc
It’s so harrowing to see these. I really hope the ME community can rally and get help to them. I’m not on Twitter or LinkedIn but I’ve tried to research whether there are any French ME experts and found one potential person called Pr. Jean-Dominique de Korwin who I think may be appropriate (more info here also). If @AbyssPearl is still in need, would anyone be able to link our thread here so she (or someone helping her) can see these please? Thanks so much! Prof de Korwin seems known to Millions Missing France already (see here) and he’s tagged in a photo by the UK ME/CFS BioBank also. His research studies suggest he understands and believes in ME too (see here). Worth noting this page on MEpedia too as it seems the main (perhaps only) ME organisation in France is/was ok with GET and CBT. Prof de Korwin is mentioned on this page but it seems like there are a mix of experts involved – presumably because it’s the only organisation in France – so perhaps some understand ME and some don’t and are biopsychosocial. So given all this, my impression is that Prof de Korwin is likely trustworthy but I don’t have personal experience and have just searched online as best I can, so I’m conscious of harming someone through my lack of knowledge of the French system! Hope that’s helpful!
