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

DanME

Senior Member
Messages
289
Hi folks,

good news!

A new European research network for ME/CFS called EUROMENE has been approved by the European Cooperation In Science And Technology (COST), in layman terms, COST is going to fund professional collaboration between different research teams throughout Europe.

"The main aim and objective of the Action ist to create a sustainable integrated network of researchers in Europe working in the field of ME/CFS. Action will provide clear benefits via coordination of research activities, support to development of common standards, database synchronisation, and promotion of new research projects in the area. Data depositories harmonisation and data collection protocol synchronisation can greatly improve use of existing data, including Open data sources, and allow the development of coherent research strategies."

Here is the link. You can also download their Memorandum of Understanding, which sounds very promising. As far as I know, more research teams will join soon.

http://www.cost.eu/COST_Actions/ca/CA15111

The Memorandum is copy protected, but here are some of their objectives:

- develop strategies to collect population-based data on the prevalence of ME/CFS, including pilot studies in selected locations
- explore the potential of existing cohorts
- promote co-operation and involvement of research groups with an objective to assess potential biomarkers for ME/CFS
- define a standardized clinical diagnosis for ME/CFS for clinicians and researchers
- foster development of prevention and treatment guidelines
- coordinate efforts to determine the social impact of ME/CFS
- establish communication links with industrial organizations (pharmaceutical, biotechnology and ICT industries) in each participating country
- demonstrate ME/CFS as a promising field for carrier development in science
- foster knowledge exchange on use of synchronized diagnostic criteria and management of research in ME/CFS
- review existing facilities for the storage of tissue samples

and many more...

Members so far:

Bulgaria Prof Evelina SHIKOVA-LEKOVA
Germany Prof Carmen SCHEIBENBOGEN
Latvia Dr Uldis BERKIS
Latvia Prof Modra MUROVSKA
United Kingdom Dr Eliana LACERDA

PS: I just found out, that COST has more members than the EU (like Island, Isreal & Norway) and is only co funded by the EU...
 
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medfeb

Senior Member
Messages
491

DanME

Senior Member
Messages
289
Thank you for posting. Very interesting



This PDF says
"The economic dimension of the activities carried out under the action has been estimated, on the basis of information available during the planning of the action, at EUR 32 million in 2015."

Is that a budget estimate or something different?

Yeah, I think 32 million € is the budget estimate for the next four years. After that they have to apply again. (But also not sure)

Quite impressive actually.

I hope this propels research onto a new level in Europe.
 
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Messages
50
Location
Germany
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?
 
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Sasha

Fine, thank you
Messages
17,863
Location
UK
Patient stratification! :woot:

The relevant clinical areas of expertise are listed as neurological and the keywords are "neuroinfections", "neuroinflammation" and "neuroimmunology"! :woot:

They want biomarkers! Population-based studies! :woot:

Loads of good stuff in there. :woot::woot::woot:

It's as though Europe suddenly grew an agency like the NIH and it burst into action - and in the right direction, weirdly, without going down some BPS plughole. It describes CBT/GET as "not fully evaluated", which I hope is code for "reviewers haven't done their job of evaluating it properly" as opposed to "needs some more trials".

Does anyone else find that if they try to copy and paste quotes it comes out in Arabic script? o_O
 

A.B.

Senior Member
Messages
3,780
Not a whiff of psychobabble here. They want real science. A very encouraging development. I had been wondering lately when there would be EU funded initiatives. With the things happening in the US it was only a matter of time.
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
This is the UK researcher listed, quoted on the Voices from the Shadows website:

Press release by Dr Eliana Lacerda – CFS/ME Observatory – the London School of Hygiene & Tropical Medicine. March 2012

“Voices from the Shadows is a poignant documentary, which unveils the reality of people with severe ME/CFS and their carers. We decided to show it at the London School of Hygiene & Tropical Medicine to draw attention to this health problem that has been stigmatised for decades. We wanted to target a medical audience in an effort to raise awareness about this disease to those directly or indirectly involved in health care decision-making for people with ME/CFS.

“Patients have often been misdiagnosed, disregarded, and treated with prejudice, with serious consequences for both them and their carers. We hope that this type of initiative helps to promote a revision of preconceptions about ME/CFS in health researchers and professionals, and to bring renewed interest for research in this field, particularly in light of mounting biomedical research evidence in ME/CFS.”

Dr. Eliana M Lacerda, Research Manager, CFS/ME Observatory

Sounds good!
 

DanME

Senior Member
Messages
289

Yeah, the Action has been def approved, here:

"COST Actions are networks centred around nationally funded research projects in fields that are of interest to at least five COST countries. The financial support averages EUR 130 000 per year for a four-year period."

Seems like funding is on the fly and depends on how many countries participate. I guess, they don't transfer the 32 mil € right to the bank. ;)
 

DanME

Senior Member
Messages
289
Has anybody heard about the researchers from Latvia and Bulguria? Do we know anything about them?
 

A.B.

Senior Member
Messages
3,780
According to the COST website, Professor Evelina Shikova-Lekova is associated with the Bulgarian National Center of Infectious and Parasitic Diseases, and with another COST project about developmental origins of chronic lung disease. Pubmed has one study where she is listed as author, and it's titled Replication-competent hybrids between murine leukemia virus and foamy virus.

Dr Uldis Berkis is associated with the Riga Stradins University. Director of the research deparment to be precise. http://www.rsu.lv/eng/science-and-research/research-organisation/structure/research-department

On Google his name shows up in relation to a variety of research initiatives and health and research related agencies.

It looks like they're new players in the ME/CFS field. Which is good news because one thing the ME/CFs field needs is attracting more people.
 

A.B.

Senior Member
Messages
3,780
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.
 
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