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

I tried to register at the weekend and failed several times. Perhaps I should contact support staff and see what will happen if I cannot sign the petition prior to Friday

 

Thanks for the post. We had decided to try to increase the number of signatures. I've forgotten the details but currently the petition is maybe 6th and if we could get to 10,000 signatures then it would be number 1.
We had started to encourage people to apply then we heard, from those who tried, that you couldn't support the petition (online) at this time.

UPDATE/EDIT: the latest information is that people in the UK may not be able to register on the Webportal after the 31st January. If the Webportal is working in the next few days then best to try to sign the petition Webportal before 31st. If you cannot register via the webportal after the 31st then you can send signatures via post --- they won't contribute to the total on the Webportal but they will be counted separately.
- There is no age limit on who can sign the petition.

Our target is to increase the number of signatures in the next month/2 months. The Horizon Europe research program is due to be finalised in April. We want a policy included to address the lack of funding for biomedical research into ME - "neglected diseases affecting a significant number of people" (approximately 2 million in the EU have ME) --- specific diseases are not generally named in Horizon Europe (apart from cancer etc.).

Please keep trying to support the petition online and post an update here, if you find the system is working.

 

My girlfriend just received an update and the problem with registering an account on the EU petition site is now solved.

- Creating a new account from scratch should now work without a problem.

- If, however, you have already tried to register an account and received an email with an activation link that didn't work, there is an easy workaround.
The link you received was in the following wrong format:
https://www.europarl.europa.eu/petitions/en/profile/verify?token=SOMETOCKEN&id=SOMEID
The correct format is:
https://petiport.secure.europarl.europa.eu/petitions/en/profile/verify?token=SOMETOCKEN&id=SOMEID
[Note that the token=SOMETOCKEN&id=SOMEID will, of course, be something else in your activation link, namely a string of symbols unique to your account.]

In short: copy the wrong link in notepad, replace the www bit by petiport.secure and paste+go the new link in a browser. Your account should then be activated.

Good luck!

@FMMM1

 

Btw, after logging in (even when you initially followed a link to the petition), you will find yourself on the generic start page of the petition site.
Searching for 'Evelien Van Den Brink' will easily get you back to the petition.

 

Hi missed @MatthiasRiem message above so this is basically just a repeat! It seems that the technical glitch has been fixed - you can now log on and support the petition!

Here is a copy of the email from the petitions committee - it may help! @Michiel Tack @Andy


"Dear Sirs,

Thank you for your email.

Unfortunately there has been recently a technical glitch with the notification messages automatically sent by the PETIportal. The issue has been resolved.

Both of your accounts on PETIportal are in 'active' status and both have successfully supported petition 0204/2019.


Other citizens who could not validate their newly created account can try the following :


The syntax of the URL/link(s) which were suggested to click to activate the account was not correctly formed :


Basically the wrongly formed emails were in this format:

https://www.europarl.europa.eu/petitions/en/profile/verify?token=SOMETOCKEN&id=SOMEID

The host name is incorrect. It needs to be:

https://petiport.secure.europarl.europa.eu/petitions/en/profile/verify?token=SOMETOCKEN&id=SOMEID


In short: copy the wrong link in notepad, replace the www bit by petiport.secure and paste+go the new link in a browser, etc.
( ps: the token=SOMETOCKEN&id=SOMEID will, of course be something else, UNIQUE for your account)



This is only for the messages that have been sent by petiportal in the last couple of days. Currently the issue has been resolved, meaning that the link in the notifications messages are correctly formed.

If someone would not be able to validate her/his newly created account to support on PETIportal, please send us some screenshot and information. We always do our best to make it work as soon as possible.


We apologise for the inconvenience and thank you sincerely for your comprehension and support.


Kind regards,

The Secretariat of the Committee on Petitions"

 

Thank you all, had to try several times to log into the European Parliament website but I am very happy to have added my support to Evelien’s Petition before 31 January

 

Code:

https://www.facebook.com/sci4me/posts/1044972945889114

Code:

https://twitter.com/s4me_info/status/1223181588831391744?s=20

https://twitter.com/user/status/1223181588831391744

 

My understanding is that people from outside the EU (which includes people from the UK after Brexit) can still sign the paper version of the petition and send in their support through the mail.

@FMMM1

 

Yes, I agree i.e. people from the UK can still sign the paper version of the petition and send in their support through the mail. However, I would encourage those in the UK to support the petition today; that way their support will be counted on the Petitions Committee webpage - ME is in the top group of petitions (6th?) and if it could get 10,000 online signatures (in total) then it would be number 1!

 

Online signatures now at 2012, was hoping for more of an increase but at least the number has gone up.

 

You could circulate the paper version in your local ME/CFS support group or even among your friends and family, and then mail it when you have enough signatures. That's an effective method to can give you a lot of signatures. I think there were 3574 paper signatures from Germany and Austria this way.

 

I hope lots of people do that, personally I've not got enough energy or time to organise that kind of thing.

Out of interest, I looked at the analytics for the forum's tweet and Facebook post above.
Twitter, 2,104 people saw the tweet, 96 clicked on the link
Facebook, 733 reached, 43 clicked on the link.

And in the time period after posting those on social media, 56 people signed the petition.

 

I've shared the links far and wide, but only had a few respond saying that they've signed up. TBH, I'm surprised that the paper version can so comprehensively outstrip online signatures!

I wish I'd thought of getting someone to take a papercopy along to the local group meets. Too late now.

ETA: just re-read the comments above which imply that it's not too late for UK signatories to a paper copy. So will see what can be arranged.

 

The German speaking countries are finally joining the movement.

I also read that there will be a TV transmission on ME/CFS in Germany in a few days.

 

Can you sign it if you live in a country which has just left the EU?

 

Yes. People living outside the EU (which now includes citizens of the United Kingdom) cannot sign the online version but they can sign the paper version.

To sign the paper version:

1) Print out this template and fill in your contact information and signature:


2) Make a photograph of the hand-signed paper sheet or scan it and send it to: eu.me.petition@gmail.com
Please make sure the scans or photos are sharp and well-lit.

Thanks for your support!

 

Thanks Michiel, that's very useful.

 

Renewed discussion of the EU petition

"The Committee on Petitions plans to discuss the progress of petition 0204/2019 on funding for research on myalgic encephalomyelitis. EMEC member Evelien Van Den Brink will give a short speech during the meeting."

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

 

Merged thread
Renewed discussion of the petition
"
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://twitter.com/user/status/1464176443810742272