Europe: EUROMENE

I realise that this is the community lounge and it may be hard to drag people away from Betty's bar but I have a very short memory span and thought it would be good to flag up some feedback from a meeting today where EUROMENE was discussed. It is a community sort of feedback.

(On a broader front maybe it would be good to have a subsection specifically for news updates from various charities and other organisations keen to keep people informed and get feedback. I am thinking of e.g. Solve ME, MEA, IiME, NIH, etc etc.)

EUROMENE is, like Betty's, a pretty virtual club of European ME researchers, but they do meet in person a couple of times a year and it seems to have been a very useful networking system. They were lucky enough to get a COST grant for regular meetings. Documents have been, or are being, produced on epidemiology, economic burden of ME, biomarkers etc. etc.

There is a plan for patient interaction but it may have been a bit slow to get off the ground. That may be understandable while the group has been getting itself sorted but perhaps it is time to get lines of communication established. A central part of the EUROMENE cost project is to define what research is needed and how to get collaborations set up. Patient input ought to be an important part of that.

I am very happy to try to keep this forum informed of EUROMENE news but there might be an opportunity for a patient (or carer) to get more directly involved in dialogue. The UK is already well represented at meetings and someone from maybe France or the Low Countries might be ideal. At this stage I am only putting this out as an informal idea but my impression is that the EUROMENE researchers would very much welcome closer patient involvement.

There is a EUROMENE website:
http://www.euromene.eu

which may not be that brilliant, but at least it shows a few smiley researcher faces.

 

Excellent, I think such a collaboration could be mutually beneficial.

 

I am very much in favour of the specific suggestion and the general idea of buidling bridges to such groups and giving them a voice here. Of course anyone from these groups can join as a member and I imagine they would be very welcome. Is it practical to have an arrangement that shows that welcome? First thought is to have a forum for outside bodies, but that can work the other way and look as if they are shoved into a dark corner.

 

Sounds good to me

 

Excellent suggestion. As well as just making good sense anyway, it would be nice for our group here to get involved in something like that.

 

I was thinking of having a subsection of threads for friendly organisations - under one of those biscuit-coloured stripes on the forum page. I think people like Charles at MEA would welcome a fixed thread like that for news updates and perhaps related general discussion. It would be up front that it was a place for showcasing the organisation and it would not in any way stop representatives contributing to all other threads.

 

Like a subforum in the "Advocacy" section specifically for various "ME Organizations" to provide updates and other information?

 

As long as it isn't hidden in a sub forum tab, links with organisations is going to be something to be very proud of.

 

Hello, I moved this thread to its new home in the Advocacy section, and then I found out that forum isn't accessible yet, and thus no commenting would be possible.

Therefore, I have moved it back here until such time as the other forums are live and kicking.

Thank you for your understanding.

 

Can they not have their own section under a different heading? A new section for researcher's contributions would be good.

 

Hi, I don't think that's been decided yet... Sounds like a job for The Committee!

@Valentijn

 

We can probably make this a disposable prototype thread too. When we have decided on how to give space for coverage of these organisations I can suggest something a bit snappier.

 

A Facebook post from the UK ME/CFS Biobank suggests that EUROMENE is reaching the end of it's funding, can anybody (@Jonathan Edwards ?) explain further i.e. if there is further funding for it to continue it's work?



EUROMENE's website (http://www.euromene.eu/index.html), from what I can find wading through all the text, doesn't seem to suggest that it is a limited time project.

 

EUOMENE is an immortal concept that can go on as long as people want it to. What is coming to an end is a particular grant called a COST Action project. It has helped to fund meetings and epidemiological projects amongst other things. It is something of a pump priming exercise so hopefully more grants will go in and be funded.

 

Brilliant, thanks for the reply.

 

Fane has tagged Euromene in his tweet below, let me know if this is more appropriate somewhere else.
https://twitter.com/user/status/1011977300412370944

 

Dr Scheibenbogen and a few others mentioned Euromene at the Montreal conference, they are really gearing up to fight ME tooth and nail

 

This thread has been merged as both discuss Euromene

I hesitated to open this thread, but after I had a second glance at one of the EUROMENE members' CV and an article co-authered by another member, I would like to share my readings with you. (I won't comment any further ATM - I thought this was one of the most promising ME research networks, some of its members important advocates for pwME . I just don't know how to expand my ambiguity tolerance sufficiently to deal with this stuff.)

1) From one member's CV:

Source: http://www.euromene.eu/workinggroups/CV_English_Alegre_Nov2017.pdf p.4 (bolding mine)

Source: http://www.euromene.eu/workinggroups/CV_English_Alegre_Nov2017.pdf , p. 4-5 (bolding mine)

2) From an article co-authored by another EUROMENE member:

Source: "Cardiovascular characteristics of chronic fatigue syndrome",Biomed Rep. 2018 Jan; 8(1): 26–30.
Published online 2017 Nov 28. doi: 10.3892/br.2017.1024
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5772628/

These quotes are only from two members. I hope they are exceptions...

 

EUROMENE is simply a forum, like this one, where scientists interested in ME can meet. It is not a specific group of researchers.

I think these examples are exceptions. The majority of EUROMENE members do not subscribe to BPS views. But EUROMENE is open to any European ME researcher.

 

@MSEsperanza I share your concern. The Belgian member of EUROMENE, Mira Meeus, is also strongly BPS. (see @Michiel Tack's article about the Belgian group working on Central Sensitisation Syndrome)