Lobbying European Community for funding for ME/CFS Research

Hi I've managed to get three (written) European Parliamentary questions asked on ME/CFS:
Alex Mayer (S&D) Reference :E-006901/2017
Rory Palmer (S&D) Reference :E-004360/2018
Mairead McGuinness (PPE) Reference :E-006124/2018
If you Google the reference then you'll see the question.

I'll update this further. Basically, feel free to join in (i.e. lobby) if I can help then contact me.

 

Link is:
http://www.europarl.europa.eu/doceo/document/E-8-2017-006901_EN.html?redirect

Link is
http://www.europarl.europa.eu/doceo/document/E-8-2018-004360_EN.html?redirect

This one didn't work.

Edit - but I found this -

http://www.europarl.europa.eu/doceo/document/E-8-2018-006124_EN.html

 

This is great. Thank you @FMMM1 !

I'm afraid I know little about the European Commission and its ability to decide on medical research funding. Could you give us some basic info about this or a link that gives more insight into this. How much money do they control etc, examples of studies that have been funded by the EU etc. A quick search showed that there is a EU Health Programme with a budget of € 449.4 million, which might go to medical research. Is this the reason why you are lobbying The European Parliament?

 

Thanks.

 

Thank you very much for the link. I too know little about the European Commission but yes it decides how to allocate funding. E.g. the European (Union) Commission has funded Lyme research [33.9 million euros (approximately same US dollars)] ME/CFS research has received zero funding.

Currently the European Parliament's Committee on Environment, Public Health and Food Safety (ENVI Committee) is lobbying the Commission for (more) funding for Lyme research [http://www.europarl.europa.eu/meetdocs/2014_2019/plmrep/COMMITTEES/ENVI/RE/2018/09-10/1152955EN.pdf]. Lyme and ME/CFS are similar e.g. Jonas Bergquist was involved in a study comparing protein expression in ME/CFS and Lyme*. I'm guessing that Lyme could very well overlap with ME/CFS. However, my main point is that Lyme research gets funded by the Commission, i.e. via Horizon 2020 etc, and ME/CFS research does not. Same goes with other European Union (EU) funding e.g. funding targeted at addressing social exclusion/inclusion.

Lyme has a positive image; that (I assume) is the reason the ENVI Committee is lobbying the European Commission to fund biochemical research for Lyme disease (development of a diagnostic test etc.). We have precisely the same problem (in fact some people with Lyme/ME/CFS have the same disease), e.g. no diagnostic test, but ME/CFS has got zero EU funding. I'm attempting to get people with ME/CFS, throughout the EU, to lobby their Member of the European Parliament (MEP) for funding for ME/CFS research. I'm in the UK, and the UK is leaving the EU; however, I'm planning to try to keep lobbying the EU for funding for ME/CFS.



*Paper by Jonas Bergquist and others:
"Distinct Cerebrospinal Fluid Proteomes Differentiate Post-Treatment Lyme Disease from Chronic Fatigue Syndrome"
"Neurologic Post Treatment Lyme disease (nPTLS) and Chronic Fatigue (CFS) are syndromes of unknown etiology. They share features of fatigue and cognitive dysfunction, making it difficult to differentiate them. Unresolved is whether nPTLS is a subset of CFS."
https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0017287

 

The European Union Commission has funded Lyme research (33.9 million Euros) but has not funded any ME/CFS research. The headline budget for the EU (science and technology) Horizon 2020 programme is approximately 80 billion euros [https://ec.europa.eu/programmes/horizon2020/en/what-horizon-2020].

Yes. The European Union Commission has funded Euromene. The Euromene members include e.g. Carmen Scheibenbogen [Google something like "Carmen Scheibenbogen long chain non-coding RNAs in ME CFS" and you'll see here recent paper - possible diagnostic test]. So Euromene may be in a good position to lobby the Commission for funding e.g. for funding to develop a diagnostic test.

I share your thoughts that funding is often allocated to "large research projects involving multiple institutions". I think the resources required to bid (often unsuccessfully) for funding is a barrier for researchers.

Getting ME/CFS up the priority list would be a good starting point.

 

Response from FMMM1:
In order to try to understand EU funding for research into diseases such as Lyme I did some Googling; I didn't find much but I did find this answer to a Parliamentary question:
"The remaining two years of Horizon 2020, and in particular its forthcoming calls for research and innovation project proposals accessible via the Horizon 2020 Participant Portal(6), will offer further opportunities to support research on Lyme disease."
http://www.europarl.europa.eu/doceo/document/E-8-2018-001276-ASW_EN.html?redirect
So I assume that the Commission issues "calls for research and innovation project proposals accessible via the Horizon 2020" i.e. for research/development of diagnostic tests etc. for diseases such as Lyme. So it appears that funding for research into diseases such as Lyme is not coming from/solely from the "EU Health Programme with a budget of € 449.4 million" it's in whole/part coming from the 80 billion euro Horizon 2020 fund which covers the period 2014 - 2020. There's a follow on program to Horizon 2020.

This is interesting since the Health budget is much smaller (€ 449.4 million) than the 80 Billion euros for Horizon 2020.

Also, I think that the key thing is that the EU Commission is putting out calls regarding Lyme (development of a diagnostic test etc.) but not ME/CFS. A call I assume is a grant from Horizon 2020 or some other pot. I've been told that the reason ME/CFS researchers don't apply for calls is that there are no suitable calls. If challenge the Commission will presumably say that a portion of the Horizon 2020 fund is not allocated to specific calls; therefore, ME/CFS researchers can apply for these. That's what we need to change i.e. we need calls (research grants from the EU Commission) which are specific to ME/CFS e.g. for the development of a blood based diagnostic test for ME/CFS.

I'm like you in that I don't know much about how the EU funding works but I'm trying to i.e. in order to lobby for funding for ME/CFS. I'd be grateful for any assistance readers/their friends could give me i.e. regarding how the EU works.

Thanks for your post and I hope you don't mind the tone of my response.

 

Hi thought I'd flag this up here.

In their response, to an EU Parliamentary Question [asked by Günther Sidls (MEP)], the EU Commission stated that it will "The Commission will support a [scoping] study to help identify high burden conditions [like ME/CFS & Lyme - long covid?] that are under-researched and identify research priorities to better meet the needs of patients."

The outcome of the scoping study should be a policy to support research, within the Horizon Europe program, for "high burden disease [like ME/CFS] that are under-researched and identify research priorities to better meet the needs of patients."

I'm tagging @Simon M here as this could provide a vehicle for a further GWAS study and @Jonathan Edwards as he has previously highlighted that actimetry studies are a promising research area*

I'm not sure when the scoping study will be launched but it might be useful to flag it up on this site and to try to input to it. Once the scoping study is complete then it's anticipated that Horizon Europe will have a new policy to support research into diseases like ME/CFS. Lets say scoping study completed by end 2022 then new Horizon Europe policy some time after that 2023?
@Michiel Tack

*https://www.s4me.info/threads/if-and-how-to-research-pacing-discussion-thread.22860/

EDIT - link to the question https://www.europarl.europa.eu/doceo/document/E-9-2021-005634_EN.html
Answer - https://www.europarl.europa.eu/doceo/document/E-9-2021-005634-ASW_EN.html