EU Petition 2019 - opportunity to lobby for funding for ME research

https://www.s4me.info/threads/eu-pe...ding-for-me-research.10363/page-7#post-393847

 

https://twitter.com/user/status/1465961555196063748

 

Here's a link to the debate in the PETI (Petitions) Committee of the European Parliament:
https://multimedia.europarl.europa....TI_vd?start=20211201084846&end=20211201092120

Anyone do transcripts?

@Sly Saint ?

 

For any transcript writer - this provides the link to the session relating to Evelien’s petition

https://twitter.com/user/status/1466036191623585794

 

I'm late but didn't want to miss to say big thanks to the EMEC and especially Evelien for another excellent presentation before the European Commission. Well done!

I hope the payback on Evelien's health wasn't too high. Best wishes to her and everyone involved.

 

Thanks @MSEsperanza

We've made a detailed summary of the meeting here: https://europeanmecoalition.com/summary-of-the-peti-meeting-on-the-me-cfs-petition/

 

@Wyva There was also an MEP from Hungary, Ádám Kósa, who seemed supportive of the cause. Perhaps this may be a useful opening for you for advocacy at the national level.

 

Thank you for letting me know, this is great! Currently I'm having a bit of a rough patch, so I had to take a break from letter writing a few weeks ago but I'm definitely adding him to the list of people to reach out to next. Thank you very much, @Michiel Tack !

 

If anyone is interested: well, luckily I happened to have a bit better day, so I messaged Ádám Kósa about a week ago. I told him about the dire situation of Hungarian patients, that they get zero help from anyone and are basically locked out of healthcare, that education of ME/CFS at universities is inadequate or seriously one-sided so patients' current treatment (or lack of) in healthcare probably won't change anytime soon, the things I've done and planning to do (and how I either get no response or get blown off), that any kind of help is appreciated and what else can be done, etc. I was hoping for a reply, because he is a deaf representative and a lawyer who seems to be involved in disability advocacy. Not sure how long it is reasonable to wait for a reply from MEPs, but so far, crickets.