Citizen-led Petition Calls on EU to Fund ME/CFS Research

 

Citizen-led Petition Calls on EU to Fund ME/CFS Research

First published: July 22, 2019
Updated September 25, 2019


 “Did you know that the EU has given zero funding to biomedical ME research over the past ten years? We have been working on a project to get the EU to fund the development of a biomedical diagnostic test and biomedical treatments. High time, right?
 – Francis and Evelien, EU ME Advocates


Many European-based researchers and laboratories are trying to solve the medical mysteries of ME/CFS. Yet, the European Union (EU) remains an outsider to those efforts, despite over €80 billion of Research and Innovation funding made available as part of the Horizon2020 programme from 2014 to 2020.

ME/CFS affects an estimated 20 million people worldwide, including an estimated 2 million citizens of the EU.  Solve ME has supported several European scientific teams through our Ramsay Award Program and continues to seek international collaboration and partnership for the You + M.E. Patient Registry and Biobank.

In partnership with EU ME Advocates, Francis Martin and Evelien Van Den Brink, we are proud to join #MEAction UK in calling upon the European Parliament to commit significant resources to the global fight against ME.

EU Parliament will Debate Petition

The next meeting of the EU Parliament Committee on Petitions will include a presentation from Evelin Van Den Brink and public debate about ME/CFS. ME/CFS will be discussed on October 3 at approximately 11:05 am Central European Summer time (CEST) / 7:05 pm Eastern Standard Time (EST). You can view the debate by visiting https://www.europarl.europa.eu/ep-live/en/committees/schedule and selecting “the Committee on Petitions” on October 3 at 7:00pm EST.

Francis and Evelien have been working on this project for over a year. They expect a decision about the petition will be made by the Members of the Committee, live in public, right after the debate.

Read Solve ME’s letter to the President of the EU Parliament HERE

Read the EU’s Response about ME/CFS HERE

Contact Francis and Evelien at eu.me.petition@gmail.com

For our European friends and supporters, please take a moment to read the message below from ME Advocates Francis and Evelien and support their petition to the European Parliament.

*please note this action is for citizens of the European Union only*

Hello EU!

The best way to combat a hopeless situation is to act! Please help us by signing a petition that asks the EU for increased funding for biomedical research into ME.

There are about 2 million ME patients in the EU. That’s only an estimate, because reliable figures aren’t even available. But we know we are here. And we know that we want change. Change will not come by itself; it will have to be forced. And the best way to do that is through research. But research needs to be funded.

Did you know that the EU has given zero funding to biomedical ME research over the past ten years? €0 That’s right – Nothing!

We (Francis and Evelien) have been working on a project to get the EU to fund the development of a biomedical diagnostic test and biomedical treatments. High time, right?

And we need your help! So what can you do?

Evelien’s personal experiences as a patient have been used as a way to petition the EU to make funds available for the development of a biomedical diagnostic test and biomedical treatments available to all ME patients.

You can support the petition if you are an EU citizen.

Please click here to sign this petition that asks the EU to fund the development of a biomedical diagnostic test and treatments;

Please note, that you will have to register at the official EU website before signing the petition. If you need some help click here for a guide;

Guide to support the petition

You can also read the guide to sign the petition in Danish, Dutch, French, German, Italian, Spanish and Swedish here.

We hope that you will join the action so people from all over Europe will sign the petition and send letters. Together we can show the EU how important this is to all of us.

Thank you for helping!

Onward together!

 

Evelien Van Den Brink, EU ME Advocate
Francis Martin, EU ME Advocate

Contact us at eu.me.petition@gmail.com

#CanYouSeeMEnow 

 

P.S. And now that you’re on a roll: there’s even more you can do! Please also take action by writing to your Member of the European Parliament (MEP) to ask for increased research funding;

Here’s a template letter that you can easily copy and there’s room to add your personal story;

Template letter MEPs

Send it to the MEP who represents your country in the European Parliament. You can send it to as many MEPs as you like, by email or (if available) through social media. Please see the instructions on how to find your MEP here;

How to find your MEP

 

Please do not ask your MEP to sign/support the petition, because otherwise he/she won’t be able to vote for it in parliament if it possibly comes to a vote.