EUROMENE - New European research network for ME/CFS funded by COST/EU

[Sean]

CFS/ME Observatory

Does that make us... stars!

 

[Woolie]

I ve just realisied, that the proposal has 23 countries listed as proposers:
Network of Proposers (23): AT, BE, BG, CY, CZ, DE, DK, EE, ES, FI, FR, HU, IE, IL, IT, LU, NL, PL,RS, SE, SI, TR, UK (ITC: 43%)

omg!

Even the Netherlands, amazing!

 

[Blue]

Near Neighbour Country: Lebanon, Russian Federation

International Partner Country: Canada, New Zealand, South Africa, United States

http://www.cost.eu/about_cost/strategy/international_cooperation/ipc

I wonder if Francis Collins/NIH knows about this? Probably so?

 

[Jonathan Edwards]

The sentence about the budget estimate is a little bit twisted (as far as I can judge ;-) ), but I hope the 32 Mio. Euro stand. Would be encouraging.

As far as I understand every COST action needs at least five participating countries. So far four have registred (see Factsheet above the MoU). But I think there will be more countries to join (propably more countries have been involved in the set up of this).

Maybe @Jonathan Edwards knows if and how this links to EMERG? Is this related at all or something completely different?

This is a COST application headed up by our Latvian friend that has been approved. At the first EMERG meeting approaching COST was discussed but it became clear that several members were already involved in this proposal. My understanding is that the project is intended to be inclusive so that effectively there is now funding for liaison within what has become EMERG - the two initiatives will coalesce.

The 32 million is I suspect the total budget for the COST system. The grant we are talking about is likely to be around 150,000€. This is not funding for research per se, but funding for the development of collaboration primarily within Europe but also connecting to countries outside Europe. It will fund things like meetings and bursaries for students and staff spending time in other laboratories to train and promote consistency of methodology. It is not a lot of money but it puts a stamp of approval on the entire European biomedical initiative in ME. That is an important step when it comes to labs applying for funding for collaborative projects both within individual countries and to the larger EU pots of money.

 

[Sasha]

The 32 million is I suspect the total budget for the COST system.

The grant we are talking about is likely to be around 150,000€. This is not funding for research per se,

but funding for the development of collaboration primarily within Europe but also connecting to countries outside Europe. It will fund things like meetings and bursaries for students and staff spending time in other laboratories to train and promote consistency of methodology. It is not a lot of money but it puts a stamp of approval on the entire European biomedical initiative in ME. That is an important step when it comes to labs applying for funding for collaborative projects both within individual countries and to the larger EU pots of money.

I hope they get those applications in quick. Thought we were getting some big bucks to do stuff right away there.

 

[worldbackwards]

Thought we were getting some big bucks to do stuff right away there.

So did I. We ought to know better really. I'm not sure there's ever really going to be a scenario where someone says, "No, here, have the 32 million. JUST TAKE IT, M.E. PATIENTS, DAMN YOU!"

 

[A.B.]

That is an important step when it comes to labs applying for funding for collaborative projects both within individual countries and to the larger EU pots of money.

So it's a step forward towards EU funded research programs. How far away are we from this goal?

 

[Bob]

The €32m figure seems to relate to this particular proposal but it doesn't look like it's a budget; It looks like it might be an estimate of the total amount of economic activity that will be generated under the plan.

The scheme doesn't seem to be funding specific research, but it seems to be a plan mainly to enable sharing of data and resources, and to encourage cooperation, by e.g. putting standardised and robust IT systems in place for research-data. It all seems to be focused on encouraging/facilitating: collaboration, sharing, and training and nurturing increased insight into the illness.

However, it also discusses plans to set up a cross-border patient cohort of 700 (up to 200 in each country) to look for biomarkers etc., but it doesn't say where the funding for that will come from. I don't know if there will be some research funding available or whether the individual nation states are expected to fund the actual research projects. I think it's supposed to encourage the countries to pool their own resources.

It looks interesting, but it's not clear what the outcomes will be. There's definitely a biomedical focus on looking for biomarkers etc., and also a focus on epidemiology studies to understand how the illness affects people across Europe.

I think it also discusses creating or agreeing upon a single set of diagnostic criteria (yikes! controversy alert!) and an agreed set of useful outcome measures. But I might be wrong about that - I need to reread those details.

But I've only skim-read it, so I might have misinterpreted some or all if it.

 

[Jonathan Edwards]

The €32m figure seems to relate to this particular proposal but it doesn't look like it's a budget; It looks like it might be an estimate of the total amount of economic activity that will be generated under the plan.

The scheme doesn't seem to be funding specific research, but it seems to be a plan mainly to enable sharing of data and resources, and to encourage cooperation, by e.g. putting standardised and robust IT systems in place for research-data. It all seems to be focused on encouraging/facilitating: collaboration, sharing, and training and nurturing increased insight into the illness.

However, it also discusses plans to set up a cross-border patient cohort of 700 (up to 200 in each country) to look for biomarkers etc., but it doesn't say where the funding for that will come from. I don't know if there will be some research funding available or whether the individual nation states are expected to fund the actual research projects. I think it's supposed to encourage the countries to pool their own resources.

It looks interesting, but it's not clear what the outcomes will be. There's definitely a biomedical focus on looking for biomarkers etc., and also a focus on epidemiology studies to understand how the illness affects people across Europe.

I think it also discusses creating or agreeing upon a single set of diagnostic criteria (yikes! controversy alert!) and an agreed set of useful outcome measures. But I might be wrong about that - I need to reread those details.

But I've only skim-read it, so I might have misinterpreted some or all if it.

You may be right that the €32M figure relates to the costing of all the activities in the groups that the COST grant will co-ordinate. If you add up all the grants held by the people involved you might get 32M.

COST specifically does not fund research projects, only infrastructural costs. To my mind this is exactly what is needed at this point. The cross border patient cohort has been coming in to being in the form of local Biobank projects. The UK Biobank has its 200. Spain has a bank. Norway has a 150 cohort in the phase 3 trial and I suspect more. The reality is that all this is gradually coming together under local grants. Specific projects to look at specific molecules or cells will need funding individually but that is already happening and with more charity donations more projects can be done. It would be good to have MRC, Wellcome and Arthritis Research UK money coming in and hopefully that will happen. Connections are being made.

As I see it the programme revolves entirely around what one might call biomarkers. But good epidemiological documentation of cases is also crucial - with Luis Nacul and Eliana Lacerda at the centre. Discussions of criteria and outcome measures are mooted but at EMERG there was a lot of common sense caution about re-inventing wheels. There are people involved like Alex MacGregor and Luis Nacul who are experts on how not to make mistakes in defining such things.

There is probably no need to read the project in great detail. All things like this are artificial constructs designed to satisfy grant funders. The important thing is that there is recognition of a collaborative group with sensible intentions.

 

[Sasha]

There's talk in the proposal of a "web platform" for the project, that "will allow interaction with patients" so I hope we might get to stick our oars in at some point.

It's a bit hard to see through the bureaucratese. It's clearly a step forward - I'd like to see someone from the project translating it into concrete terms for patients.

It would be great if from the start, they would communicate with us.

 

[MeSci]

Anyone else noticed the link to a petition?

The petition is described thus:

Petition for budget stability
Facing a possible budget cut resulting from recent EFSI support , COST is calling on all of its supporters to sign and share its online petition for a stable budget.

 

[Jonathan Edwards]

There's talk in the proposal of a "web platform" for the project, that "will allow interaction with patients" so I hope we might get to stick our oars in at some point.

It's a bit hard to see through the bureaucratese. It's clearly a step forward - I'd like to see someone from the project translating it into concrete terms for patients.

It would be great if from the start, they would communicate with us.

I think maybe 'they' just did, Sasha!

 

[Blue]

Apart from how big this turns out to be (regarding the budget), big thanks to all researchers and organisations involved in this. Great initiative!

 

[Sasha]

I think maybe 'they' just did, Sasha!

Great if one of us - possibly you! - is channelling them.

But I hope we'll see a direct, official statement from them that puts what the 20-page document says into concrete terms - that is, what's funded and what's not, whether the money is assured, how much they're getting, what will happen first, what if anything, patients can do to help, and so on. All the kind of stuff that the researchers would want to know if they were patients.

I realise it's very early days and that they may not be actually formed up yet and they haven't got their website but I'd love to see communication with patients at the heart of this thing, from the very start. I want to see the opposite attitude to that of the PACE investigators. I want these biomedical researchers setting the example for how to deal respectfully, openly and inclusively with ME/CFS patients.

They'll get it back a thousand-fold.

 

[charles shepherd]

Almost forgot the other two:

Dr Eliana Lacerda is associated with the London School of Hygiene & Tropical Medicine. Pubmed shows her as author of several ME/CFS studies.

Professor Modra Murovska is a Latvian virologist, also from Riga Stradings University, with some previous interest in ME/CFS (listed as author in the International Consensus Criteria on ME). There is some more informat about her here: http://www.lza.lv/scientists/Murovska.htm

And I think most know Carmen Scheibenbogen by now.[/QUOTE

This is the UK researcher listed, quoted on the Voices from the Shadows website:



Sounds good!

Dr Eliana Lacerda is part of the ME/CFS Biobank Management team at the London School of Hygiene and Tropical Medicine

http://www.lshtm.ac.uk/itd/crd/research/cure-me/ukmecfsbiobank/

This was briefly mentioned at the Biobank Steering Group meeting this week

 

[Jonathan Edwards]

Great if one of us - possibly you! - is channelling them.

But I hope we'll see a direct, official statement from them that puts what the 20-page document says into concrete terms - that is, what's funded and what's not, whether the money is assured, how much they're getting, what will happen first, what if anything, patients can do to help, and so on. All the kind of stuff that the researchers would want to know if they were patients.

I realise it's very early days and that they may not be actually formed up yet and they haven't got their website but I'd love to see communication with patients at the heart of this thing, from the very start. I want to see the opposite attitude to that of the PACE investigators. I want these biomedical researchers setting the example for how to deal respectfully, openly and inclusively with ME/CFS patients.

They'll get it back a thousand-fold.

As I understand it, what's funded is meetings (maybe releasing money currently raised by local charities), swapping staff and people sitting together coming to an agreement on frameworks to put individual studies in. The project might take on a research assistant to co-ordinate. The money is there. I think it is about 150,000. Probably the first thing to happen is that an extra day will be added to the IiME meeting in June for an EMERG gathering. What patients can do to help is drum up donations for local charities to fund the individual projects - as is already being done but this may give people confidence that they are contributing to something co-ordinated and big. Apart from me you have two direct ways in to the programme - via MEA and Charles's webpage and via IiME and its website.

I think the dust needs to settle a bit but maybe in the New Year Dr Lacerda might be able to put something on IiME's or Charles's site to clarify. There is already an EMERG page.

 

[worldbackwards]

There's talk in the proposal of a "web platform" for the project, that "will allow interaction with patients" so I hope we might get to stick our oars in at some point.

But won't we hijack the agenda and distort the debate?

 

[DanME]

Thx for clarification, Prof Edwards!

While I am also disappointed about the budget, I think the approval is nevertheless an immensely important step for the ME community and research in general. Don't forget that nearly 400 groups applied for COST this year and only 40 got funding. Networking, collaboration and connecting all the research teams throughout Europe is exactly what we need to propel research massively forward. So far there wasn't much collaboration going on (maybe between two or three teams max) and research was extremely scattered. EMERG and EUROMENE have the potential to change that.

Also an approval of COST and therefore the EU gives the ME community a lot of seriousness. Not only for future research funding, but also for advocacy and charity work. We can always refer to the COST program, if people try to dismiss our claims about the reality of ME.

A big thx for everyone, who was involved in the proposal!!!

 

[charles shepherd]

As I understand it, what's funded is meetings (maybe releasing money currently raised by local charities), swapping staff and people sitting together coming to an agreement on frameworks to put individual studies in. The project might take on a research assistant to co-ordinate. The money is there. I think it is about 150,000. Probably the first thing to happen is that an extra day will be added to the IiME meeting in June for an EMERG gathering. What patients can do to help is drum up donations for local charities to fund the individual projects - as is already being done but this may give people confidence that they are contributing to something co-ordinated and big. Apart from me you have two direct ways in to the programme - via MEA and Charles's webpage and via IiME and its website.

I think the dust needs to settle a bit but maybe in the New Year Dr Lacerda might be able to put something on IiME's or Charles's site to clarify. There is already an EMERG page.

I'm doing some Biobank work this afternoon and will be in contact with Eliana - so I'll let her know that this discussion is taking place and will ask her if there is anything further that could be placed in the public domain at this point

 

[MeSci]

I'm doing some Biobank work this afternoon and will be in contact with Eliana - so I'll let her know that this discussion is taking place and will ask her if there is anything further that could be placed in the public domain at this point

Working on Saturday - I'm impressed!