EU: News from the European ME Coalition (EMEC)

The European ME Coalition (EMEC) presents three new fact sheets about ME/CFS. We hope these will help to inform politicians and key policymakers about the need for biomedical research on ME/CFS in Europe.



The documents briefly summarize key facts about the economic and societal impact of ME/CFS in Europe and the recent efforts made by ME/CFS advocates including the petition submitted by Evelien Van Den Brink.

There are three fact sheets: a long one with ample scientific references, a short one with key figures and pictograms, and a third one that focuses on recommendations to Member States made in the recently adopted European resolution on ME/CFS.

The factsheets are available in the link below:
https://europeanmecoalition.com/fact-sheets/

Thanks to the S4ME members who provided feedback on earlier drafts of the large factsheet!

 

It's a rounding error because of the scale but the true economic costs are €40B + whatever direct expenses are wasted on the psychosocial ideology, which is the sum of all the "researchers", resources, services and clinics applying the denial-based psychosocial ideology.

It's a small detail but it should be noted that not only is this a massive economic loss, this loss are the result of planned direct expenses. In order words: people pay to waste enormous sums. Out of public funds. SMART.

 

News from the European ME Coalition (EMEC):

In response to a parliamentary question by Pascal Arimont, the European Commission stated that it is working to address under-investigated conditions, of which ME/CFS is a paradigmatic example, in the first work programme of Horizon Europe. Although the details of the proposal are still confidential, we believe this could be an important step towards increased funding for ME/CFS research in Europe ....

More info here: https://europeanmecoalition.com/the-next-step-a-new-proposal-by-the-european-commission/

 

Do you know anything about how the EU might intend to fund research into under-investigated conditions? How can we prevent that they will fund people like Fink?

 

The European resolution on ME/CFS emphasizes the need for biomedical research specifically (points 6 and 7) and asks that it be funded through Horizon Europe (point 17):

Even though the resolution is non binding, it pushes Horizon Europe to prioritize grant applications for biomedical research. The questions are whether there will be enough of those and whether this focus might deter BPS & MUS researchers from asking for funding for psychosocial studies. I'm also wary that biomedical research on "CFS as a functional disorder" or through the BPS lens may be funded because the cohorts in these studies are likely to be poorly defined (e.g. Fukuda criteria only).

 

Code:

https://twitter.com/IrishMECFS/status/1361332790525120514

 

"One year ago, the European Parliament adopted Resolution 2020/2580(RSP) on additional funding for biomedical research on Myalgic Encephalomyelitis/chronic fatigue syndrome (ME/CFS)

In honor of this anniversary, Renew Europe, Spanish MEP Jordi Cañas and patient organization CONFESQ are hosting a webinar on June 30, 17:00-18:45 CEST, titled: “Challenges and Opportunities for ME/CFS research in Europe”.

The webinar will be open to the public. You can register by sending an email to the assistant of MEP Cañas."

More at https://europeanmecoalition.com/webinar-in-honor-of-the-resolutions-anniversary/

 

Scoping study

"There is progress at the European level, but things are moving slowly. The European Commission plans to issue a scoping study that will include ME/CFS. Below, you can read an update on our work to get ME/CFS research funded through Horizon Europe, the 95 billion euro research program of the European Union."

https://europeanmecoalition.com/scoping-study/

 

Horizon Europe calls

"On 15 June, the European Commission approved the first work program of Horizon Europe for the years 2021-2022. In this article, we highlight several grants that may be relevant for scientists studying myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). We hope that our advocacy efforts will lead to better funding opportunities for ME/CFS research in future work programs of Horizon Europe."

https://europeanmecoalition.com/horizon-europa-grants-for-2021-2022/

 

Twitter summary:

https://twitter.com/user/status/1419638125370949637


https://twitter.com/user/status/1419638128348893192

 

The important thing is that research in the US, UK, and Norway are also eligible to receive funding under Horizon Europe

 

We have been working on a comprehensive overview of funding sources, biobanks, and networks for scientists interested in studying ME/CFS. https://europeanmecoalition.com/resources-for-researchers/

I don't think many know that NIH funding is open to researchers in Europe and that US researchers can receive funding under Horizon Europe. Similarly, both Solve ME/CFS Initiative and ME Research UK (MERUK) offer grant funding for ME/CFS researchers worldwide.

I hope that the overview will be useful for researchers new in the field, who are taking their first steps in studying ME/CFS.


https://twitter.com/user/status/1427266852850487301

 

Thank you to all who are involved with EMEC and the work on the fact sheets.

The EMEC fact sheets on ME seem excellent to me -- both the short and long version are succinct, the graphics in the short versions are good and the long version well referenced. (I remember there are other very good fact sheets but keep forgetting.)

It's especially helpful to have this summary of well-chosen references.

I think it would be good to have also more accessible versions of these fact sheets:

-- with a blank background (don't know how to word that better ATM) better readable and also saves ink / toner when printed.

-- A HTML (or other) version that can be more easily linked to, and content more easily copied than to/ from a PDF. (So in addition to the PDFs, the same content directly put on the website without needing to open a PDF.)

(Apologies for the bad timing, just leave this here now as I'm planning to reduce my forum activity for a while.)

 

@Adam pwme from Broken Battery has made this excellent video with highlights from the most recent discussion of ME/CFS in the European parliament.

https://www.youtube.com/watch?v=LN73i817sbo

 

An extensive summary of that meeting can be found here: https://europeanmecoalition.com/summary-of-the-peti-meeting-on-the-me-cfs-petition/.

 

A parliamentary interest group for ME/CFS

"On 28 January 2022, the first meeting of a new parliamentary interest group on myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) was held. Organized by Pascal Arimont, the group will allow for a more structured collaboration on topics concerning the illness ME/CFS in the European Parliament."

https://europeanmecoalition.com/a-parliamentary-interest-group-for-me-cfs/

 

https://twitter.com/user/status/1501849798953078788

 

European ME Coalition joins the World ME Alliance, more here, World ME Alliance, was previously IAFME: International Alliance for ME

 

The scoping study has finally been published

"The long-awaited scoping study has finally been published. This document defines “high-burden under-researched medical conditions” that will be targeted in future calls of the Horizon Europe research program. ME/CFS made the list but so did a lot of other medical conditions. This article provides a brief overview of the main results."

https://europeanmecoalition.com/the-scoping-study-has-finally-been-published/