Very severe French patient needs help

[Jaybee00]

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

 

[Yann04]

I really hope they find help. The french system is terrible for pwME.

 

[Jaybee00]

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

 

[NelliePledge]

@Jaybee00 as you’re still on Xitter I suggest checking the thread to see if Millions Missing France are aware of this

 

[Jaybee00]

Saw this—maybe millions missing France doesn’t have an @?

https://twitter.com/user/status/1896330647373045994


@MEActNet @MEActNetUK @MMissingGermany @MMissingHolland @MMissingAus @MMDublin @MEActNNE @IrishMECFSAssoc

 

[Yann04]

Maybe they've already contacted them? or perhaps they left twitter? Idk

 

[forestglip]

They have an email address on their website: https://millionsmissing.fr/static5/ressources

 

[forestglip]

I sent MM France an email. They said they asked the person to contact them.

 

[RainbowCloud]

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!

 

[Yann04]

Anyone know if there is a French translation of the D-A-CH Konsensus.

She is now in hospital and being forced to do GET. Looking for resources to try and convince the doctors not to go through.

 

[forestglip]

Anyone know if there is a French translation of the D-A-CH Konsensus.

She is now in hospital and being forced to do GET. Looking for resources to try and convince the doctors not to go through.

I can't find one from a quick search, but maybe an auto-translation of the relevant parts would be okay?

 

[Tree]

Anyone know if there is a French translation of the D-A-CH Konsensus.

She is now in hospital and being forced to do GET. Looking for resources to try and convince the doctors not to go through.

Would the NICE guideline be helpful as well?

 

[Yann04]

Would the NICE guideline be helpful as well?

That’s what we were thinking. We do have a pdf with a French Translation of the Doctors with ME Q&A on NICE and GET.

But the D-A-CH would be useful as well.

 

[Yann04]

Acutally the Quebec Guidelines might do the trick. Definitely not as severe informed as D-A-CH but they are pretty clear about no GET

INESS_Quebec_RecommandationsEM

Millions missing France - Rendre visibles des millions d’oubliés

cloud.millionsmissing.fr

 

[Yann04]

Long term update on this case is, I’ll use the twitter handle as to not doxx, Abysspearl eventually went to hospital and it arguably made things worse doctors tried to prescribe GET etc, after a while was released from the initial hospital mistreatment. But now recently they’ve been admitted again (I don’t think they had much choice in this). And it’s going terribly they’ve been “FND”’d and are deteriorating because of the misunderstanding that comes with that.

I know there’s some resources on not diagnosing Post-COVID people with FND. Was wondering if there’s something similar for ME/CFS that could be sent to hospital.