European ME Coalition:Press release: EU supports research on poorly understood diseases

Press release: EU supports research on poorly understood diseases

Thanks to the dedicated work of Belgian Member of the European Parliament (MEP) Pascal Arimont and colleagues, Horizon Europe will provide new funding opportunities for research on high-burden, under-researched diseases.

While modern medicine has produced many spectacular breakthroughs, some diseases remain poorly understood to this day. These illnesses often cause chronic pain and debilitating fatigue for which doctors have little to offer.

A notable example is the illness Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) which affects approximately 2 million European citizens. ME/CFS is characterized by severe energy impairment, post-exertional malaise, cognitive dysfunction, and many other symptoms. It often causes severe disability and can leave patients bedridden for years.

Evelien Van Den Brink, a 38-year-old patient from the Netherlands has been living with ME/CFS for 24 years. Like many ME/CFS patients her illness started with an infection from which she never fully recovered. In the quarter of a century in which Van Den Brink has suffered from ME/CFS, scientific research has made disappointingly little headway. There are still no biomarkers, diagnostic tests, or effective treatments for the illness.

More at link: https://europeanmecoalition.com/press-release-eu-supports-research-on-poorly-understood-diseases/

 

The 25 million is not only for ME/CFS but for research on high-burden, under-researched medical conditions. So there will likely be fierce competition amongst these research fields. ME/CFS researchers will have to collaborate and submit a competitive proposal otherwise it could be that the funds go to other research. So an important step, but other steps need to follow in order to get tangible results.

https://twitter.com/user/status/1600897404848701441

 

Ugh. Still crumbs. Frankly anything that doesn't guarantee long-term stable funding won't work. It's impossible to bring researchers in a field that could dry up at any time, especially a highly controversial one, even though the reasons for the controversy are pure historical baggage.

Maybe we'll build something out of those crumbs but none of this fixes the underlying issues. Unfortunately there is no one and no process to accomplish this.

This is all United States Senate level of dysfunctional. Which may or may not mean something to most but damn trust me it's one hell of a zinger.

 

Well done to Evelien and all involved with EMEC, this is a great result!

Unlike some, I appreciate that we can't go from nothing to everything in one step, as much as I would like that to happen, so while I would like to see an ME/CFS exclusive pot of money that is far larger than this, I can appreciate and applaud this for being a step in the right direction. It is also great to see that a number of MEPS from different parties and countries are supporting this, we need that kind of diverse support from healthy people in (relative) power to move things forward.

 

Also probably worth pointing, EMEC in one of their tweets points out that the program aims to fund approx 4 grants with 6 to 7 million euros each.

6 million euros is roughly 5.1 million GB Pounds or 6.3 million US Dollars. For comparison, DecodeME was awarded 3.2 million GBP, and the NIH initial funding for the collaborative research centers was 7 million USD, so if at least one ME/CFS project is successful in applying for this fund (and obviously that is not guaranteed) then in pure money terms it would be a more than significant addition to what is being spent elsewhere.

 

6 million for a single project would allow for a large and rigorous study to reproduce previous findings.

 

The European call on ME/CFS: an overview and what follows next

"More than 2 years after the adoption of the ME/CFS resolution, the European Commission has finally taken an initiative to support research on ME/CFS. The Horizon Europe work program 2023-2024 includes a call on “tackling high-burden for patients, under-researched medical conditions.” This call gives ME/CFS researchers improved opportunities to compete for a big European grant but no funding on ME/CFS has been ensured yet. This article provides an overview of what has been decided by the Commission and which steps still need to be taken to get tangible results for ME/CFS patients.

Last week, we published a press release highlighting an important call in the new Horizon Europe work program. This call was inspired by the ME/CFS resolution and aims to support illnesses such as ME/CFS that have a high disease burden but have thus far been under-researched. Our press release focused on highlighting this important step forward and thanking the many patients and allies whose advocacy has made this possible. In the current article, we aim to provide more detail about the call, what it means, and how things could proceed from here."

More at link: https://europeanmecoalition.com/the-european-call-on-me-cfs-an-overview-and-what-follows-next/

 

Very interesting
e.g.
The funding amount, however, will likely be split among multiple collaborators. An application requires researchers from minimally 3 different EU countries and many European grants include even larger consortia. Researchers from the UK and the US can join in to become partners and receive funding under this call.
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Are there other interesting calls in the work program?
Yes. Remarkably, there is another call in the Horizon Europe work program 2022-2023 that provides good funding opportunities for ME/CFS researchers. This call focuses on the relationship between infections and non-communicable diseases. The description writes that “increasing evidence suggests that several infections might influence the development of many non-communicable diseases (e.g. multiple sclerosis, Alzheimer, post-covid-19 condition)…” Submissions for this call are expected to elucidate causative links between infections and non-communicable diseases onsets.

Given that many ME/CFS patients report that their illness started with an infection, this call might provide funding for longitudinal studies to test why the incidence of ME/CFS is increased after certain types of infection. The Dubbo study and prospective studies on Epstein-Barr Virus have previously found that this is the case but larger sample sizes are needed to identify risk factors for developing ME/CFS.

This call has a budget of 30 million. It aims to fund 4 projects that will receive 6 to 7 million euros each. The planned opening date is 12 January 2023, which is much sooner than the above call on high-burden and under-researched illnesses. We hope that ME/CFS researchers will also submit competitive proposals for this call, possibly in collaboration with Long Covid researchers.
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What are the next steps?
We are advocating for the call on “tackling high-burden for patients, under-researched medical conditions” to be repeated in future versions of the Horizon Europe work program. That way it would be a structural measure to address the lack of funding of research on these conditions. In the long run, this approach could be more valuable than a one-time investment in ME/CFS research that receives no follow-up.

I’ve done a thread to highlight those bits.

 

Compared to the need of not just ME but all the other ignored illnesses out there the money is a pittance. However, without Evelien and others we wouldn't even have a shot at that much. Big thanks to all who helped bring this about

There'll be fierce competition for these funds from other underserved illnesses. I'm a bit worried that the ME field isn't organised enough yet to put together a winning collaborative project. Hoping to be wrong and keeping my fingers crossed we get a slice of the pie for a good project this time around.

 

Do we know if there are ME organisations preparing a project for this opportunity?

 

Concentrating on the finance misses what a big deal this is.

Apart from the star projects, CERN, EUSPA etc, most researchers probably regard Horizon with horror and disgust and would like something far less bureaucratic with far less fanfare, and in truth a more efficient system could probably deliver more research faster. But that is to miss the point of what Horizon is, which is a giant flag waving for 27 national Governments, 27 national Parliaments, and multiple Regional or Federated Administrations who all have motivated administrators and politicians, in addition to the EU central machine.

Getting ME/CFS featured within the Horizon flag is hugely valuable because it accords the cachet of being amongst the serious contenders - a bit like getting your name mentioned at the Cannes film festival, even if not nominated for a prize it means people are going to be watching for what comes next. Obviously it's not an end in itself but it is something to build on, so if S4ME gave annual awards for advocacy - this would certainly get my vote for 2022.

 

I would see this as more to do with researchers preparing a project rather than patient organisations. There is the EUROMENE: European ME Network of researchers that did get some EU funding in the past to collaborate. I tagged the two Irish members to highlight the first European ME Coalition statement, and one liked the tweet. But the Irish representatives are both economists so this may not be suitable for them. People could always email other members of EUROMENE or even random researchers to highlight the opportunity to them.

 

New EU Horizon for ME/CFS Research?
https://www.meresearch.org.uk/new-eu-horizon-for-me-cfs-research/

I’m not convinced it’s a separate condition

 

The European ME Coalition have published an explainer of the grants that can be applied for, thread here, Blog: European ME Coalition: Horizon Europe calls 2023-2024