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

[Andy]

"
The meeting is planned to take place in Brussels on 1 December 2021. The petition on myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is scheduled to be dealt with at around 10:15 CET.

Evelien Van Den Brink, ME/CFS patient and one of the founders of the European ME Coalition (EMEC), is allowed to participate in the meeting by way of a remote connection. As the petitioner, she will present the petition and give the Members of the Committee an update seen from the patient perspective.

Usually, the petitioner will be allowed to make a presentation before the European Commission addresses the issue. Thereafter, the Members of the Committee will discuss the petition and formulate their response.

You can follow the Committee proceedings as a webcast via the following link: http://www.europarl.europa.eu/committees/en/peti/home/highlights

You can either watch live or at a later time. A recording will be available from the day after the meeting."

https://europeanmecoalition.com/renewed-discussion-of-petition/

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

 

[ME/CFS Skeptic]

 

[FMMM1]

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 ?

 

[It's M.E. Linda]

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

 

[MSEsperanza]

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.

 

[ME/CFS Skeptic]

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/

 

[ME/CFS Skeptic]

@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.

 

[Wyva]

@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 !

 

[Wyva]

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.

 

[Trish]

I imagine MEP's get hundreds of messages each week, and it could take a while for them to look into the subjects raised and work out how they will respond. I hope you get a helpful response.