2020: How to sign the EU-petition on a request for funding for biomedical research on Myalgic Encephalomyelitis (No0204/2019) - now closed

ME/CFS Skeptic

ME/CFS Skeptic

Senior Member (Voting Rights)
How to sign the EU-petition on a request for funding for biomedical research on Myalgic Encephalomyelitis (No0204/2019)

1) Go to the EU website:
https://petiport.secure.europarl.europa.eu/petitions/en/petition/content/0204%2F2019/html/missinglink

2) Click register at the top right corner of your screen.
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3) Fill in your name, country and address. Add your email and choose a username, password and security question. Fill in the CAPTCHA test (to prove you’re not a computer) and click to agree with the privacy statement document.
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4) An email will be sent to you as confirmation. Go to your email address and click on the link provided in the email to activate your account. If you can’t find the email, check your SPAM folder.
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5) By clicking the link you will have activated your account. Go to the EU petitions website and log in with your newly created username and password.
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6) Type Myalgic Encephalomyelitis in the search bar to find petition No 0204/2019 by Evelien Van Den Brink.
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If you can’t find the petition you can also use this link: https://petiport.secure.europarl.europa.eu/petitions/en/petition/content/0204%2F2019/html/missinglink
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7) Press the blue button “Support this petition” at the bottom right of your screen.
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8) Press the green button “Support” to sign the petition.
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Hurray! You’ve just signed the petition. Thanks for your support!
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Please help us find friends, family members or fellow patients who might be willing to sign the petition. Signing it is only a small effort but it could have important consequences. If the petition becomes one of the most signed EU-petitions ever, it will be harder to ignore the demand for more funding for ME-research.


If signing the petition online is not an option, you can also sign the paper version.
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!
 
Last edited:
Wits_End said:
Is this a new one? And if so, can we Brits still sign it?
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No, it's the existing one, and only people from countries still in the EU can sign it electronically. Apparently that restriction doesn't apply to paper copies, instructions for which are given at the end of the opening post of this thread.
 
I just got this email about it:

From: NOREPLY-PETIPORT@ep.europa.eu <NOREPLY-PETIPORT@ep.europa.eu>
Sent: Friday, March 22, 2024 4:33 AM
Subject: EP Petitions Portal - Change of Status





This is an automated message to inform you that the status of petition Request for funding for biomedical research on Myalgic Encephalomyelitis (ME) (0204/2019) that you supported has been updated.



Just click on the link below, or cut and paste it into your web browser, to view the page associated with your petition:

https://www.europarl.europa.eu/peti...esearch+on+Myalgic+Encephalomyelitis+%28ME%29
 
Is this the update you mean @Dolphin?
Petitions which it is proposed to close in the light of the Commission's written reply or other documents received
...
Petition 0204/2019 by Evelien Van Den Brink (Dutch) on a request for funding for biomedical research on Myalgic Encephalomyelitis
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It says that the status has been updated. The status currently says "closed". I guess that is the update?
 
Actually, in the "Related information" section there is a PDF titled " Notice to Members". It is dated to January 2024. Maybe this is the update? It seems to be a summary.

I'll copy the 2024 part here:

4. Commission reply (REV I) , received on 15 January 2024

The EU has supported projects in the Myalgic Encephalomyelitis (ME)/Chronic Fatigue Syndrome (CFS) area (some EUR 7.2 million under Horizon 2020), or relevant to the ME/CFS area (more than EUR 50 million under FP7, Horizon 2020 and Horizon Europe), with the aim to promote research and innovation to underpin the development of diagnostic and therapeutic options. During the Committee on Petitions meeting, the Commission services provided examples of EU-funded projects covering the spectrum from promoting biomedical research to improving the networking of researchers and accelerating innovation by supporting small and medium-sized enterprises (SMEs). Recent projects funded under the Horizon Europe Health Cluster and which should benefit ME/CFS research, include the Long-COVID project2 that started in mid-2022 and will study therapies including for patients with ME/CFS, and the POINT project3 that will start in 2024 and will study the prevention and management of non￾communicable diseases caused by the post-acute phase of COVID-19 infection.

The written response of the European ME Coalition (EMEC) in relation to the Commission’s contribution at the Committee on Petitions meeting appears to dismiss some of the funded projects as irrelevant. It should however be noted that research on other conditions with a shared/similar pathophysiology (mechanism, biomarkers…) or symptoms, as is expected with studies on long COVID-19, or research focusing on basic biological processes such as chronic inflammation, could also advance the ME/CFS field.

The exploratory scoping study4 funded by the Commission on evidence to tackle high-burden under-researched medical conditions was published in early 2023. The scoping study identified ME/CFS as one of the twelve possible groups of medical conditions that are a high burden for patients and under-researched.

Following the publication of the scoping study, a call topic was published under the Horizon Europe Cluster 1 “Health” part 4 of the 2023-2024 Work Programme5 on ‘Tackling high￾burden for patients, under-researched medical conditions’ (2024-DISEASE-03-146), offering a further opportunity for researchers working in the field of ME/CFS field to put forward research proposals. Evaluation is currently ongoing.

Pursuant to Article 168(7) of the Treaty on the Functioning of the European Union7, EU action in the field of public health must fully respect the responsibilities of the Member States for the organisation and delivery of health services and medical care. Thus, screening, diagnosis and treatment of ME/CFS fall within the responsibility of Member States.

Conclusion

The scoping study identified ME/CFS as a high-burden medical condition that remains under￾researched. A call topic was launched under Horizon Europe to address the under￾representation of such medical conditions in EU-funded research projects. This call should facilitate the development of much anticipated diagnostic and therapeutic options.
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X thread continues:
2) Unfortunately, we were not informed about this decision in advance and disagree with this course of action. Since there are no tangible results yet, we think the petition should remain open. We will submit a document to the PETI Committee to argue our case.
3) We will keep advocating for biomedical ME/CFS research at the European level. One of our goals is to support a large collaboration of ME/CFS researchers across Europe to advance the field.
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Thanks EMEC.
 
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