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

A friend on mine (Evelien) has succeeded in getting a petition on ME accepted by the EU Parliament [link below*]. The petition highlights the impact of ME on 2 million people in the EU and the lack of EU funding for ME Research. I'd be grateful if you would consider supporting it (and ask friends and family to do so) - i.e. sign the petition.

The EUROMENE (EU Commission funded) biomarker group is due to make recommendations regarding potential diagnostic tests next April (2020); so this might be a good time to raise awareness of the impact of ME in the EU.

ME Action are supporting the petition; you can find out more about how to sign the petition/background etc. on the ME Action website - I'll post again with the links. @EspeMor @Andy

*Link to petition number 0204/2019
https://petiport.secure.europarl.europa.eu/petitions/en/petition/content/0204%2F2019/html/Petition-No-0204%2F2019-by-Evelien-Van-Den-Brink-%28Dutch%29-on-a-request-for-funding-for-biomedical-research-on-Myalgic-Encephalomyelitis

ETA: Step by step instructions on how to sign given in this post, https://www.s4me.info/threads/eu-pe...ding-for-me-research.10363/page-6#post-232266

 

I am not with it this evening, but am not sure how to sign it.

Do you have to log in to sign it?

I can’t remember if I already have log in details or not, as it looks very different to the previous EU petitions I have signed and I seem to remember something about the process being changed. Will go back tomorrow when hopefully I can cope with the process better.

 

Excellent!

I assume this is for EU citizens only?

 

@Peter Trewhitt it's not obvious. I assume you have to be logged in, like you say. I've registered and will try in the morning.

 

Yes, EU citizens only can sign EU Parliament petitions.

 

The registration email just came through. When you're logged in there is a "Support this Petition" button down the bottom right of the page.

 

Great idea. It will be interesting to see numbers who sign elsewhere seeings that European citizens have seemed quite quiet on activism

 

Unfortunately you do have to be a citizen of the EU to sign it. Thanks.

 

Unfortunately I have to agree i.e. about the influence of ME Community in the EU. Lyme disease has received 33.9 million euros in the last 10 years (development of a diagnostic test/treatments) from the European Commission; ME has received nothing. Lyme effects an estimated 1 million people in the EU - ME 2 million. However, it's easier to get funding for some diseases compared to others - ME has in part suffered since it's perceived as psychological - Jan Brea (co-founder of ME Action) covers this in the film Unrest. ME Action have some material on issues around under-funding on their website.

The European Commission funded EUROMENE biomarker group is due to make recommendations on potential diagnostic tests next April (2020) [Dr Eliana Lacerda, Vice Chair of EUROMENE, speaking at the EMERGE Conference (March this year)]. EUROMENE will then lobby Members of the European Parliament (MEPs) to support those recommendations. So this petition may help to build support for EU funding for the development of a diagnostic test and treatments.

Many of you will be familiar with members of the EUROMENE biomarker group e.g.:

• Carmen Scheibenbogen of Charité University Berlin - Carmen Chairs the group; and
• Jonas Bergquist Uppsala University (and OMF).

I should emphasise that the above are personal views.

Thanks for all of your support and please sign the petition if you can (EU Citizen) and any other help/advice would be welcome.

@EspeMor

 

The register button is under the menu button, top right. I agree, it's not very friendly to navigate!

 

I've managed to register and support. The registration was difficult as initially I couldn't find UK, but we're there as GB. They want full address, make up password and put it in again (I got second one wrong on first try ) then provide a security question and the answer to it. And then there's a Captcha. No wonder people complain EU is bureaucratic!

Looks like 58 supporters so far. I wonder if they'll remove all UK supporters after 31 October post Brexit.

ETA you need to make up a user name too.

 

Oh, and the buttons for Twitter and FB don't work. The Twitter one just takes you to your Twitter account (UK Parliament petition page gives you a Tweet with direct link to petition you want to support) , and the FB one only links to the main Euro petition page rather than the ME petition page so far as I can see.

 

111 supporters now.

In case it's of any interest, I'm not sure how much of the asked-for information during sign-up is deemed essential, as I decided not to give them my phone number and they still allowed my registration.

ETA: A missing "d".

 

https://twitter.com/user/status/1151513496166850565

 

www.meaction.net/2019/07/17/sign-a-petition-to-ask-the-eu-for-funding-for-biomedical-research/

 

Now 157 supporters.

 

367 now, so going up at a rate of 15 per day over the last two weeks.

 

@Andy @Tom Kindlon @Simon M One of the interesting things which came up in discussions was why ME is not funded:

• there have been no specific research calls for ME issued by the European Union (EU) Commission. This is ring fenced funding i.e. it can only be allocated to the specified disease. There have been specific research calls for Lyme disease. Lyme disease research received 33.9 million euros in the past 10 years in EU funding - ME received nothing i.e. despite the fact that the incidence of ME is twice that of Lyme (2 million people affected versus 1 million);
• ME looses out in competition with other more established diseases. So if you submit a grant application for ME and there are other applications e.g. for MS (more established disease) then typically ME will loose out. The reasons I've heard are that the research base for the more established disease (MS etc.) means that the evidence base for the application is stronger. I'd add that other researchers have been told that ME isn't viewed as a biomedical disease - it's viewed as psychological (Ian Lipkin - in discussion with NIH officials).

The people we need to influence are our politicians and particularly those who make decisions on funding, governing group. With respect those who make decisions on funding are not on this forum. We've been working with ME Action (UK) on this petition; they've very few volunteers - I'm sure they would welcome assistance - consider volunteering.
@EspeMor

 

If I had time and energy spare then I'd consider it. And I'm pretty sure that Simon's health wouldn't allow him unfortunately.