Europe: EUROMENE

EUORMENE is an organisation set up by researchers - specifically by Derek Phoebe the UK epidemiologist. It is a collaboration between European ME researchers and got a COST Action grant about four years ago to study research needs and education. Various publications have resulted.

EMERG was set up by charities wanting to encourage research - specifically by Invest in ME. While it was in theory a good idea, EUROMENE already existed and EMERG got sidetracked by charities wanting to set the agenda for researchers. It was not very well received by the EUROMENE community and faded out.
 
Simone said:
I’m hoping that someone from Europe could clarify something for this ignorant Aussie trying to get a better grasp on the European landscape.

What is the difference between EUROMENE and EMERG? Are they just two separate groups focussing on similar things? Are there differences I’m not appreciating? Are there synergies with having the two orgs or do you think it’s just duplicating efforts?

I’ve noticed that EUROMENE is very active, but I’ve not heard much about what EMERG does, so I’d love to know more!
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To me the politics of ME is quite complex. Invest in ME formed a group called EMEA [European ME Alliance] which is a group of European National Associations led by Invest in ME - if you like EMEA is one of Invest in ME's European lobbying tools. I Googled "emea + invest in me" and this turned up:
"Invest in ME Research - UK Charity for Myalgic ...https://www.investinme.org
We have also initiated the European ME Clinicians Council (EMECC) to create a network of ME clinicians in Europe. Up-to-Date Education. We have implemented ..."

That reminded me that Invest in ME also created a European ME Clinicians Council (EMECC)

From @Jonathan Edwards comment I wonder if EMERG was intended as a kind of think tank - trying to influence the direction of EU funded research [Horizon Europe program]? Invest in ME didn't participate in EUROMENE as EUROMENE was a "broad church" - it included highly respected scientists like Derek Phebe and BPS folks. To be fair I think when something is funded by the EU Commission, in this case via COST program, it's expected to be a broad church.

I'm part of EMEC [https://europeanmecoalition.com/] they've only been around a few years [EDIT - roughly 2 and a half years] but they've made remarkable progress. I'm confident that they'll deliver funding under Horizon Europe - but these things take time (a further 1/2 years is my guess). They are not part of Invest in ME's "umbrella"!

I hope your (Australia) ME/CFS politics is simpler!

@Michiel Tack
 
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Euromene has produced 11 videos, which will shortly be available on their website however it is currently down for maintenance. In the meantime we have kind permission to share ‘Live with ME' that features Dr Charles Shepherd.

EUROMENE stands for European ME Network, also called European Network on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. It was started by the Cooperation in Science and Technology (COST) Association, an international not-for-profit organization in 2016.
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https://meassociation.org.uk/2022/03/new-me-cfs-video-from-euromene/
 
Merged thread

Post on Twitter/X* re reactivating European Network on ME/CFS (EUROMENE) - noticed a question --- purpose? Ideas guys?

Here's a useful discussion re purpose of original EUROMENE -

@MSEsperanza
"I mean, is EUROMENE really only a forum? What about the working groups on common goals?

So, should we be involved? How? What do forum members think?"

@Jonathan Edwards (replying)

"Yes, EUROMENE is just a forum.

What is confusing is that certain EUROMENE members are part of a research grant called a 'COST Action'. This is a European Union grant for promoting meetings and gathering information relevant to collaboration and education. So there are no 'specific country members' for EUROMENE but there are for the COST Action. The COST Action is really just an awareness raising exercise so is going to do nobody any harm. This is what has the 'working groups', which are just groups of people prepared to spend time gathering data to justify the money for having meetings.

The people who set up the COST Action are very biomedically orientated. Moreover, they are the higher quality scientists, unlike some others who might like to run things. However, part of the aim is to bring in people from each country and the organisers have wanted to be inclusive to allow BPS types to benefit from the biomedical environment if countries cannot provide anyone else. How that works out is anyone's guess, but, as I say, since this is not actually a grant for active research no great harm can be done.

EUROMENE is specifically a forum for researchers. So people on this forum in general have no real reason to be involved. However, EUROMENE is keen to have patient dialogue and the COST Action encourages patient involvement. If patients want to attend the EUROMENE meetings currently funded by the COST programme then why not - they could contact their country representative. The people running the programme would have no problem with patients expressing their views about BPS and so on.

Maybe I should actually go back to where EUROMENE started - that will give you an idea. EUROMENE was set up by people like Derek Pheby (I think it may have been his idea). Pheby is the epidemiologist who got Nacul and Lacerda involved in the study published in 2011. He is one of the wisest of scientists in the ME field and not a prima donna. He is now retired but still gathering important data on economic costs of ME. If for no other reason, I think people should embrace EUROMENE because it continues his aims.

https://www.s4me.info/threads/europe-euromene.30/page-2#post-98567

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FMMM1 said:
Post on Twitter/X* re reactivating European Network on ME/CFS (EUROMENE) - noticed a question --- purpose? Ideas guys?

Here's a useful discussion re purpose of original EUROMENE -

@MSEsperanza
"I mean, is EUROMENE really only a forum? What about the working groups on common goals?

So, should we be involved? How? What do forum members think?"

@Jonathan Edwards (replying)

"Yes, EUROMENE is just a forum.

What is confusing is that certain EUROMENE members are part of a research grant called a 'COST Action'. This is a European Union grant for promoting meetings and gathering information relevant to collaboration and education. So there are no 'specific country members' for EUROMENE but there are for the COST Action. The COST Action is really just an awareness raising exercise so is going to do nobody any harm. This is what has the 'working groups', which are just groups of people prepared to spend time gathering data to justify the money for having meetings.

The people who set up the COST Action are very biomedically orientated. Moreover, they are the higher quality scientists, unlike some others who might like to run things. However, part of the aim is to bring in people from each country and the organisers have wanted to be inclusive to allow BPS types to benefit from the biomedical environment if countries cannot provide anyone else. How that works out is anyone's guess, but, as I say, since this is not actually a grant for active research no great harm can be done.

EUROMENE is specifically a forum for researchers. So people on this forum in general have no real reason to be involved. However, EUROMENE is keen to have patient dialogue and the COST Action encourages patient involvement. If patients want to attend the EUROMENE meetings currently funded by the COST programme then why not - they could contact their country representative. The people running the programme would have no problem with patients expressing their views about BPS and so on.

Maybe I should actually go back to where EUROMENE started - that will give you an idea. EUROMENE was set up by people like Derek Pheby (I think it may have been his idea). Pheby is the epidemiologist who got Nacul and Lacerda involved in the study published in 2011. He is one of the wisest of scientists in the ME field and not a prima donna. He is now retired but still gathering important data on economic costs of ME. If for no other reason, I think people should embrace EUROMENE because it continues his aims.

https://www.s4me.info/threads/europe-euromene.30/page-2#post-98567

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I did respond on Twitter & highlighted that I'd created a discussion thread here!


 
[EDITED] Posted these i.e. on Twitter/X -
I'm wondering who would actually set the agenda i.e. what EUROMENE II would actually do! Also, how would it be reactivated --- procedure?



 
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