ME Action: The EU committee on petition is preparing a resolution on ME

Excellent! Greatly appreciated.

 

You’re welcome!

 

Done.

 

Thanks, Scott!

 

Sorry, I’ve been AFK. I assume it’s residential address. I haven’t seen anything which specifies? Perhaps someone else will know more. This page on EU petitions (both to start one and to sign one) doesn’t specify, it just says address.

https://ec.europa.eu/info/about-european-commission/get-involved/petition-eu_en

Sorry I can’t be more helpful!

 

https://twitter.com/user/status/1236926009347387392

 

The vote on the ME resolution in the Committee on Petitions (PETI) was scheduled for 17 March but due to measures taken to deal with the CORVID-19 outbreak, it has been postponed to 29-30 April.

https://twitter.com/user/status/1237740956197289985

 

It seems that the next meeting of the Committee on Petitions will go ahead as planned on 30 April. The Draft Motion for a Resolution on additional funding for biomedical research on Myalgic Encephalomyelitis is mentioned in this update on the EU website and appears as number five on the agenda. https://www.europarl.europa.eu/comm...e-on-petitio/product-details/20200423CAN54722

We're cautiously optimistic that the vote in this subcommittee will be successful, but if people could contact their members of parliament in the Committee of Petitions (PETI) and ask them the vote for the draft motion for a resolution that would be greatly appreciated. Many thanks to the people who already did.

You could ask them to support: Resolution - PE 646.806 - Draft Motion for a Resolution on additional funding for biomedical research on Myalgic Encephalomyelitis (2020/2580(RSP))

Many thanks in advance,

 

Are you hoping them to commit a figure and if so multi millions ? Given that individually European governments are behind America, Australia, Canada etc In putting in money, getting significant funds from a central source could be transformative to the continent .

 

The draft motion for the European resolution on funding for biomedical research on ME is available here: https://www.europarl.europa.eu/meetdocs/2014_2019/plmrep/COMMITTEES/PETI/RE/2020/04-30/1200263EN.pdf

The meeting will be live-streamed. The voting will end at 10:40. At around 11:25 the voting results will be announced. More info on the EMEC-website: https://europeanmecoalition.wordpress.com/2020/04/28/voting-the-me-resolution-part-i/

 

How it describes the illness

I like what I'm seeing in this document. There seems to be a minor error however.

 

Looking good. Clear language and this is especially important:

There is simply no way to argue that the rights of ME patients to benefit from medical treatment have not been knowingly denied, leading to well-documented disastrous outcomes. Ongoing for decades, requiring to make up for this neglect by not only ramping up but making up for decades of neglect and willful maligning.

This is the direct outcome of the ME-BPS model. This outcome was predicted and it was easily predictable. All of this could have been avoided, it was the product of choices made by people with no stakes in the outcome and neither knowledge, will nor ability to actually deliver on their outlandish promises. This discrimination is not random or unfortunate, it was largely created, amplified and maintained by medical and public health institutions, making it a moral and legal necessity to revert this disaster of choice.

Definitely not could. We know this for a fact. Neglecting a serious disease has predictable consequences and there is no excuse to be found here, it has been confirmed for years that children and teenagers do contract ME and that health care has largely been a harmful but willful participant in this disaster.

This is important. We see this issue with the NIH, that treating ME as one of many diseases, ignoring its long-held (and ongoing) status as an overtly discriminated disease, leads to little change. It isn't enough to say "do something", it has to be "and actually mean it", it has to take into account the awful history of this disease and the blatant disregard for its patient population.

Bit unfortunate that the timing did not allow the resolution to include COVID language, but it should be communicated as being extremely relevant, even timely.

 

Today is the last day to contact your MEPs. Below is a mail you can copy and paste, just replace everything between brackets. You can find the mails of MEPs from your country who sit on the PETI committee here: https://www.europarl.europa.eu/committees/en/peti/home/members

Google Translate or DeepL should be able to translate the mail decently well.

No mention of COVID19 unfortunately for the sake of not making the mail too long.

 

https://twitter.com/user/status/1255769147767734272

 

https://twitter.com/user/status/1255803866228166657

 

What comes next?

 

https://twitter.com/user/status/1255805190437056512

 

Press release from European Parliament:

Petitions MEPs raise concerns over underfunding of EU research into Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), in a resolution adopted on Thursday.

In a draft resolution adopted today with 30 votes in favour and none against, Petitions MEPs call for additional EU funding to advance research on diagnostic tests and treatment of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS).


Underfunding of biomedical research into Myalgic Encephalomyelitis is unjustified, say MEPs

ETA: Tweet from PETI Committee Press if you want to like/retweet/comment

https://twitter.com/user/status/1255812260540428288