Europe: EUROMENE

[Jonathan Edwards]

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.

 

[Liv aka Mrs Sowester]

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

 

[JCB]

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.

 

[arewenearlythereyet]

Sounds good to me

 

[Barry]

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.

 

[Jonathan Edwards]

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.

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.

 

[Valentijn]

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?

 

[Liv aka Mrs Sowester]

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.

 

[Skippa]

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.

 

[Jan]

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

 

[Skippa]

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

 

[Jonathan Edwards]

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.

 

[Andy]

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.

 

[Jonathan Edwards]

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.

 

[Andy]

Brilliant, thanks for the reply.

 

[Andy]

Fane has tagged Euromene in his tweet below, let me know if this is more appropriate somewhere else.

 

[Alvin]

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

 

[MSEsperanza]

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:

Chronic fatigue syndrome is a well defined clinical entity through the diagnostic criteria established by the CDC in 1994, which mainly affects middle-aged women with a very characteristic personality profile with characteristics of perfectionism, middle studies Superior in more than 50% and that conditions a severe functional disability in the same, inactive standards at the time of diagnosis more than 60% of patients affected by CFS. In the CFS study, it is important to evaluate the presence of comorbid phenomena in the form of fibromyalgia, dry syndrome, psychopathological disorders, ligamentous hyperlaxity and various forms of hypersensitivity, among others, which will cause a worsening of the quality of life of these patients.

In the stratification of fatigue, the existence of validated questionnaires to quantify fatigue, pain, anxiety-depression and quality of sleep and of life, where high values of fatigue, pain, Anxiety-depression and quality of sleep and very low quality of life.

On the other hand, the practice of ergometric tests for the study of intolerance to physical exercise, emphasize the severe decrease in oxygen consumption after the maximal physical exercise test and neuropsychological batteries for the study of cognitive dysfunction, with alterations In the processing speed of information and memory. Regarding treatment, we have at this moment evidence in cognitive-behavioral therapy and programmed physical exercise therapy and through the basic studies in genoproteomics, lymphoid expression, redoxand mitochondrial metabolism among others, we hope to have future therapeutic targets such as alpha-1-antitrypsin, to modify the clinical course of chronic fatigue syndrome, which at present is towards chronicity.

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

Peer-reviewed publication and other research output
[...]
2. Castro-Marrero J, Cordero MD, Sáez-Francàs N, Jimenez-Gutierrez C, Aguilar-Montilla FJ, Aliste L, Alegre-Martin J.
Could mitochondrial dysfunction be a differentiating marker between chronic fatigue syndrome and fibromyalgia? Antioxid Redox Signaling 2013;19:1855-60.IF.7.189.Q1.

This work demonstrates the intracellular alterations of oxidative stress markers in CFS, of great relevance in the pathogenesis of CFS

3. Castro-Marrero J, Cordero MD, Segundo MJ, Sáez-Francàs N, Calvo N, Román-Malo L, Aliste L, Fernández de Sevilla T, Alegre J. Does Oral Coenzyme Q10 Plus NADH Supplementation Improve Fatigue and Biochemical Parameters in Chronic Fatigue Syndrome? Antioxid Redox Signaling 2015;22:679-85.IF.7.189. Q1.

It is verified that after the administration of coenzyme Q10 and NADH, the imbalance of oxidative and mitochondrial stress markers is restored in patients affected by CFS.

4. Castro-Marrero J, Sáez-Francàs N, Segundo MJ, Calvo N, Aliste L, Fernandez de Sevilla T, Alegre J. Effect of Coenzyme Q10 plus NADH co-supplementation on maximal heart rate after exercise test in CFS patients: a randomized controlled trial. Clin Nutr 2016;35:826-834. IF.4.476. Q1.

It is observed that after administration of these nutritional products, not only modulates the imbalance of oxidative and mitochondrial stress, but also improves fatigue.

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:

Despite the current data indicating that the majority of the cardiological parameters investigated are not significantly different in patients with and without CFS, a significant association between the disease and low levels of blood pressure was identified. Other pilot studies revealed a higher prevalence of hypotension and orthostatic intolerance in patients with CFS. Furthermore, many of the CFS symptoms, including fatigue, vertigo, decreased concentration, tremors and nausea, may be explained by hypotension.

CFS is associated, in addition to fatigue, to a wide spectrum of symptoms, including joint and muscle pain, headaches, anxiety, depressive symptoms, cognitive and sleep disorders and intolerance to physical exertion.

A total of 44 patients with suspected CFS were included in the current study (9 males and 35 females; mean age, 40±13 years) as presented in Table I.

With regard to noninfectious events prior to illness, neurological problems (amnesias, cognitive impairment, difficulty concentrating, confusion, headaches and vertigo) or undue stress were identified to be the most common. This reflects the pathophysiology proposal for CFS; that it is a multisystem disease, which involves the interaction between the immune and central nervous system, and in which stress potentially reactivates or replicates latent viruses, such as EBV, causing the symptoms of CFS.

As a cross-sectional study, it is not possible to determine whether the weight and obesity were significant predictors for CFS or otherwise. However, only three of the CFS patients were considered overweight or obese. This is considerably less than previously reported (22) and this could be associated with debilitating and chronic nature of the disease, which leads patients to have a more sedentary lifestyle, thus significantly reducing mobility (23).

In conclusion, although the present results require confirmation in a larger population, it is apparent that CFS patients have low blood pressure. In these patients, appropriate physiotherapeutic activity ensures that constant physical activity is performed, from which the patients will also benefit from a psychological point of view.

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...

 

[Jonathan Edwards]

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.

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

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.

 

[Effi]

@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)