Hi everyone!

Time for an update: We have super important news!

The Committee on Petitions is preparing a resolution on ME! This is the first-ever resolution on ME in the EU and if adopted, this means a great leap forward towards our goal of attaining funding for biomedical research on ME. 

It is planned to be tabled in March during a meeting of the Committee on Petitions and in April in the Plenary (a meeting with all MEPs). Afterwards, the Members of the Committee on Petitions will decide what the next step will be. 

We need to show the EU that there is massive support for the resolution!

If you are an EU citizen you can still support the petition online if you haven’t done so already! Please click the following link for instructions in several languages.

More great news: In Germany and Austria Regine Steiner and her daughter Anna Steiner have collected 3574 signatures on paper! An incredible achievement! They were helped by Frauke Bielefeldt who very successfully encouraged people to sign and collected many of the signatures through the “ME/CFS-Plauderecke” Facebook group. We also received signatures from Belgium and the Netherlands. In total there are now 3763 signatures on paper and 1929 signatures online.

A big thank you to each and everyone who helped to make this happen! The PETI secretariat told us that the Members are aware of the public support the petition gets!

If you also want to support the petition by signing or collecting signatures on paper, please find a template here that you can print or fill out digitally.

The template is available in several languages. Everyone, from all over the world, is allowed to sign the petition on paper!

You can photograph or scan the printed paper sheet and send it to: [email protected]

Please make sure the scans or photos are sharp and well-lit. Thank you!

After the petition meeting on 3 October 2019 we worked really hard to make sure that real progress will be made. Alice joined our team and her expertise has helped us to take big steps forward! We sent many letters, contacted MEPs and three new Commissioners and received some nice responses. Later Joachim and Michiel also joined us and their contributions to the project have been very valuable as well. 

On January 9th Alice and Nancy (who represents the European ME Alliance – EMEA) met Belgian MEP Pascal Arimont in Brussels. Mr. Arimont asked a parliamentary question on ME in September 2019. (See links below.)

The meeting was very successful. Mr. Arimont agreed to become a champion for ME! This means that he will monitor the progress and help to make sure that there will be a special provision in the Horizon Europe research program that signals the importance of neglected diseases like ME. This should facilitate access to the EU research funds for biomedical research and allow ME researchers to be more successful in applying for funding for biomedical research. 

Moreover, Mr. Arimont sent a letter to Director General Eric Paquet and Comissioner Gabriel to ensure that neglected diseases like ME will be included in the Horizon Europe program. He also requested a meeting. We are incredibly grateful for Mr. Arimont’s help! 

In the meantime we have also been working on arranging a meeting between the Director General Eric Paquet of Research and Innovation and three European top ME researchers. We hope this will help to convince the Commission that more can be done to support ME researchers in their search for answers and treatments. Fingers crossed!

We would like to thank you all for your fantastic support! We can make unbelievable things happen if we believe in our collective strength!

Francis, Alice, Joachim, Michiel and Evelien

Here’s the link to MEP Pascal Arimont’s parliamentary question: https://www.europarl.europa.eu/doceo/document/E-9-2019-002599_EN.html 

The answer given by Commissioner Moedas can be found here: https://www.europarl.europa.eu/doceo/document/E-9-2019-002599-ASW_EN.html  

And this was our response to the Commissioner’s answer  https://docs.google.com/document/d/128lzPqm4kdzhUmSjtyktF7RWsi_ntzl2iWCZ37wWZPs 

FAQ

Some answers to frequently asked questions:

• It is possible to add signatures as long as the petition is open. There is no timelimit on how long a petition can be open. 
  

• EU citizens can sign the petition. Either on paper or on the Webportal; (https://petiport.secure.europarl.europa.eu/petitions/en/petition/content/0204%252F2019/html/Petition-No-0204%252F2019-by-Evelien-Van-Den-Brink-%2528Dutch%2529-on-a-request-for-funding-for-biomedical-research-on-Myalgic-Encephalomyelitis).

• Non-EU residents and non-EU citizens are not able to register in the Webportal to support a petition. However, they can send their signatures via post.

• There is no age limit on who can sign the petition. People from the UK won’t be able to sign the petition online after Brexit (31st January), but they can continue to sign the petition on paper.