Trinity College Dublin: New research network will bolster our understanding of Chronic Fatigue Syndrome

Trinity College Dublin: New research network will bolster our understanding of Chronic Fatigue Syndrome

https://www.tcd.ie/news_events/arti...nderstanding-of-chronic-fatigue-syndrome/8737

29 March 2018

Assistant Professor of Economics at Trinity, Dominic Trépel, has been appointed Ireland’s representative on a newly established research network, which seeks to improve our understanding of the economic consequences and social impact of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)).

The condition significantly reduces quality of life for those affected by it and, if left unaddressed, may have significant economic implications to individuals and to wider society. There are substantial gaps in our knowledge of the impact of this complex disease, but the new ‘European Network on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (EUROMENE)’ mission is to address these.

The network will establish an inter-connected group of researchers working on ME/CFS and is built on the principles of multidisciplinarity, ensuring the: involvement of patients and other stakeholders; strategic coordination with multiple stakeholders; attraction of early career investigators; involvement of COST countries and Near Neighbour Countries; fostering of international cooperation.

The principal objective is to create an integrated network of researchers in the European Union/Associated and Near Neighbour Countries accompanied by a network of facilities and associated training establishments. It will also foster a full chain of translational research to further develop much-needed treatments and prevention strategies for the improvement of patients’ quality of life.

Professor Trépel said: “Despite subjective and unclear diagnostic criteria and approaches to clinical case definition, ME/CFS is increasingly recognised as a neuro-immune disorder characterised by symptoms like chronic low-grade inflammation, mitochondrial dysfunction, autoimmune reactions and brain disorders. However, we still don’t know much about how it develops.”

“Currently, the fragmented nature of ME/CFS research in Europe means there is no common platform or database on such cases, guidelines for diagnosis and treatment are lacking, and there are no inclusive estimates on the economic impact of the disease across Europe. The new European network of research groups will provide the means to address these gaps.”

 

I don't remember hearing of this. Website here: http://www.euromene.eu/coastaction.html

 

Interesting to hear of research into the real-life impacts of ME for PwME and society, which is every bit as important as the science. And I suspect might be another indicator of changing social perceptions.

Tagging @dave30th in case it is of interest.

 

For interest, we have a thread on EUROMENE here, https://www.s4me.info/threads/euromene.30/

 

How do they plan on getting accurate numbers when we have no definitive diagnostic criteria that is used by medical practitioners? Alot of doctors think fibro and ME are the same thing or else know nothing about ME. Until that problem is addressed...the whole thing is a waste of time imo

 

Well, I think that's a chicken and an egg scenario. We really need an idea of numbers aand scale of disability etc to put forward our case for research funds. Yet without research we won't have diagnostic criteria.

We have to start somewhere.

 

Diagnostic criteria are not actually about diagnosis by doctors in the clinic. Clinical management is always dictated by probabilities, not categories. Diagnostic criteria are purely for research and epidemiology purposes. We have adequate figures and have had for some years now. About 02.% of the population have ME/CFS by narrow criteria. That is all we need to know. It is a big enough problem to put a lot of effort in to. The lack of funding is not tied to not knowing how many people are ill.

 

Mary Dimmock et al's paper on economic cost of ME in USA, was a good starting point over there. As JE says above it can be a good starting point to say " this is likely to be an underestimate of the costs, due to x,y,z".

 

What can solve the lack of funding?

 

Giving money I am afraid. As I have said often before, most illnesses have their major research funded by charities. Governments don't do it. Having said that the NIH has been producing money quite a bit recently and maybe the MRC would if good enough projects were proposed. The log jam at the moment may be in getting the research community to agree on the need for proper quality control. That may be happening and it is something the patient community have had very major input in to.

Funding David Tuller might be the best investment at the moment!