Europe: European ME Alliance (EMEA) (also EMECC and EMERG)

Andy · Oct 17, 2021

Note from Moderators:
IiME created the EMEA, and also the EMECC (Clinicians Council) and the EMERG (Research Group). The EMEA is a member of EFNA (the European Federation of Neurological Associations).

A number of threads have been merged to create this thread.
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Invest in ME announce the formation of the European ME Clinicians Council

http://investinme.org/IIMER-Newslet-190102EMECC.shtml

Hutan · Jan 20, 2019

I think this idea deserves more attention. Thanks to @obeat for highlighting it on another thread as an idea that could be adopted in other regions. It would be good to hear more about the American group and the proposed European group.

The charity Invest in ME Research has arranged an inaugural meeting of leading European clinicians who are involved in treating people with Myalgic Encephalomyelitis.

This meeting follows an American initiative that was started by Dr Lucinda Bateman and Mary Dimmock - more details of the American meeting are here -
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To this end, we have used the name given to the American group that met in USA early 2018 under the chair of Dr Bateman and we have provisionally named this group the European ME Clinicians Council. We have also borrowed from their experiences and documentation and liaised with Mary Dimmock over the establishment of this group. We would use the American meeting as a model and use similar objectives from there – though this can be amended as discussed by participants.

We feel that there is a need to build a network of clinicians in Europe who can support each other, work together, and do it immediately and have agreed to use the USA meeting as a starter for the European group.
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@Medfeb, @RoseE

Andy · Jul 20, 2019

Website has been created for the Council, http://www.emecc.org/index.shtml

Jonathan Edwards · Jul 20, 2019

My reservation is that this has already been going for for some time under the auspices of EUROMENE. IiME were certainly helpful in getting researchers together over the last ten years. But the EUROMENE group has been around a good while and became an active enterprise with the EU COST grant awarded to Uldis Berkis. Over the last two years clinicians throughout Europe have been collaborating on pretty much every aspect of ME, producing guidelines and recommendations. I do not see a need for an additional organisation.

There is also the problem that organisations with names like 'Clinician Council' inevitably attract people who talk a lot and want to be important. The great thing about EUROMENE is that it is pretty much free of that because it is just trying to get a job done.

Trish · Jul 20, 2019

EMECC will work with the American initiative and be supported by the European ME Alliance (EMEA - now representing fifteen countries).
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This is very confusing.

So there is EUROMENE, The European ME Alliance (EMEA) and now EMECC.
This seems counterproductive in an environment where there is so little good research and clinical care for ME. Surely a single organisation would be better.

Andy · Oct 17, 2021

Fatigatio symposium in Stuttgart, August 2019

Details, in German, can be seen here, https://www.fatigatio.de/cfs-me-fachtagung-2019-des-fatigatio-ev/

From the English language conference flyer, http://euro-me.org/documents/Documents-DE/Fatigatio 2019_fachtagungsflyer_EN.pdf

The main topic of this year‘s conference of the Fatigatio e.V. is the connection between a viral trigger and the onset of the severe and chronic Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME /CFS).

A large number of studies, all in the last year alone, led to an open and joint collaboration of scientists worldwide: For example, changes in the metabolism, in the microbiome, in the immune system and in the autonomic nervous system (ANS) could be detected. These building blocks pave the way out of the labyrinth of the alleged somatization disorder and provide opportunities for research into diagnostics and drug therapy for ME /CFS.

Until the final breakthrough, however, the patient is required to provide evidence to physicians, assessors and institutions. For this reason, criteria are also presented that have already proven themselves in some expert reports and can facilitate the path of dealing with the institutions. It might seem so but we are not fighting alone: The strategies pursued by the “European ME Alliance” (EMEA) and the European Federation of Neurological Associations (EFNA) to improve care to those with ME /CFS in Europe are another highlight of the event. Before, during and after the event it is possible to contact representatives of the patient organizations and exhibitors. For doctors and scientists there is an extra room for personal exchange. Federal Association Fatigatio e.V., The Board
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Our medical speakers:
Prof. Dr. med. Uta Behrends Clinic and Polyclinic for Pediatric and Adolescent Medicine of the Technical University of Munich Dr. rer nat.

Bhupesh K. Prusty Institute of Virology and Immunobiology, Biocentre University of Würzburg

Dr. med. Philipp Steininger Institute of Virology, Clinical and Molecular Virology, University Hospital Erlangen

Prof. Dr. med. Wolfgang Huber Specialist for internal medicine, nephrology and environmental medicine in Heidelberg

International speakers:
Linda Tannenbaum CEO/President of the Open Medicine Foundation (OMF), California (USA); connected via skype

Nancy Van Hoylandt Vice-President European ME Alliance (EMEA), Brussels, and Board Member European Federation of Neurological Associations (EFNA)
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The slides of the presentation from EMEA can be seen at this link, http://euro-me.org/documents/Conferences/EMEA-Stuttgart-August-20194.pdf

Trish · Sep 30, 2019

I am confused. Is this different from the EUROMENE? And which are the 2 UK organisations is involved?

From the slides, there are 3 separate groupings within this organisation:
Patients: EMEA European ME Alliance
Clinicians: EMECC European ME Clinicians Council
Researchers: EMERG European ME Research Group

Andy · Sep 30, 2019

Trish said: ↑

I am confused. Is this different from the EUROMENE? And which are the 2 UK organisations is involved?
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Yes, it is different from EUROMENE. The two UK organisations involved in EMEA are IiME and Hope 4 ME & Fibro NI.

strategist · Sep 30, 2019

Andy said: ↑

The slides of the presentation from EMEA can be seen at this link, http://euro-me.org/documents/Conferences/EMEA-Stuttgart-August-20194.pdf
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This is a nice presentation.

Sly Saint · Oct 28, 2019

EMERG
The first workshop will be a two-day event for the European ME Research Group (EMERG).

EMERG is a concept to bring together the foremost European ME researchers in order to establish an understanding of the Aetiology, Pathogenesis and Epidemiology of ME.

Initial meetings were held some years ago and a number of the original EMERG group members have been meeting, discussing and working together during these years and the initial meetings helped to create good working relationships.

However, due in part to lack of resources, time constraints and due to more empahisis being placed on world-wide international collaboration, the charity concentrated efforts in building up the International Biomedical Research into ME Colloquiums instead as a means to foster collaboration, build new ideas and share knowledge.

It has been increasingly evident, though, that we really do need a European base of research.
After discussions at the BRMEC9 conference it was decided to organise a new meeting of EMERG and we are very pleased with the response and enthusiasm shown to develop this group.

The two-day workshop will take place in London and we hope that we can maintain the momentum and build on the ideas that we have had for this group, and which are augmented by new ideas from researchers.
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EMECC
In February this year Invest in ME Research organised the inaugural meeting over three days in London of the European ME Clinicians Council (EMECC).

The first meeting consisted of leading European clinicians who are involved in treating people with Myalgic Encephalomyelitis.

EMECC was organised following an American initiative that was started by Dr Lucinda Bateman and Mary Dimmock.

The aims of the meeting were to bring together clinicians in the field of Myalgic Encephalomyelitis to review the current state of knowledge, to present and discuss the latest initiatives, and to foster collaboration.

We wanted this to become a formal group that will work with the American initiative and be supported by European patient organisations.
Indeed, the European ME Alliance (now representing fifteen countries) would be prominent in supporting this.
In the first meeting there was a very positive and progressive atmosphere and a range of topics was discussed covering diagnosis, treatments, follow-ups, education, research and how the group continues and expands.

Now another workshop spread over three days has been arranged by the charity in November.
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http://www.investinme.org/IIMER-Newslet-191001EMERGEMECC.shtml

can't find any dates.

Sly Saint · Apr 13, 2020

Our Dutch colleagues in ME/CVS Stichting Nederland have been working on a questionnaire that they wish to send out to as many ME patients as possible.

The purpose of the questionnaire is to conduct research as follows -

Purpose of research: To determine:

Do ME/CFS patients more often get infected with COVID-19 than other people?

Do people with ME/CFS have other and/or more/ more severe symptoms than others?

Internist Dr. Joris Vernooij and Dr. Rogier Louwen of Erasmus University have developed an online scientific research project in which ME/CFS patients with and without COVID-19 and a control group of people around the patients are urged to participate.

Participants in the project will be questioned weekly about the development of their symptoms.

Based on the analysis of this study, a follow-up study is expected.

The ME/CFS Foundation Netherlands has invited all ME/CFS patient organisations in the Netherlands and in in EMEA member countries to participate in the study.

The initiators of theproject and all those involved in the research work are working completely pro bono.
Therefore, no costs will be incurred by participants.

More details are on the ME/CFS Foundation Netherlands site - https://mecvs.nl/nieuws/persbericht-covid-19-onder-me-cvs-patienten/

Participation is via https://www.zorgvolg.nl/mecvscor.php .

Using the translate facility for the browser then one can read this in one's own language.

The research data is to be totally anonymised.
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http://europeanmealliance.org/news-Q12020-001.shtml

Sly Saint · Apr 17, 2020

taken from Anils FB page

Study among ME / CFS patients on COVID-19; a response to the design of the study

Google translation of the piece by Lou Corsius

https://t.co/oO8Ie7GRkq

The ME / CFS foundation draws attention on its website to a study among ME / CFS patients into the coronavirus.

“Fatigue clinic and ME / CFS Foundation Netherlands have therefore taken the initiative together to investigate the possible impact of this disease on ME / CFS patients. They do this in close collaboration with Erasmus University. ”

However, the question is what they will investigate and with whom? Based on the research design, I arrive at the following findings:

With Context and Purpose:

No purpose is stated here. It is important to know what the yield must ultimately be and what you can do with that result.

At The Inquiry:

The first point of attention is: the new corona virus must unite us above all in everything that can help to combat it. The research design does not show how this research will help.

For Research Question:

Do people with ME / CFS have COVID-19 more often than people without ME / CFS?
The question is how you will answer this based on this research. See also population and control group.
Do people with ME / CFS have more / different complaints than people without ME / CFS?
What should this insight provide? Do the questions about the complaints and the answer options provide enough guidance to be able to derive well-founded conclusions?
In Population:

Patients with ME / CFS, with or without a COVID-19 diagnosis.
Control group from the environment of the participating patient.
Who is the ME / CFS group in this? There is no further inquiry into the ME / CFS complaints and the load capacity. It is therefore the receptacle that we always warn against. You cannot draw specific conclusions based on this.

Due to the way of turning off, no checks on the respondents are possible. Everyone can fill in something, even people who are not sick.

The control group consists of people from the immediate vicinity of the patient. The chance that this will lead to mutual contamination with COVID-19 is therefore high. That makes an answer to question 1 impossible.

The manner in which inquiries are made about the diagnosis of COVID-19 strongly depends on what one reports himself. There is no control over it. So are we really dealing with COVID-19? Also the assumption of authorities because a housemate has been tested positive and there are also complaints with you. As yet, few corona tests have been carried out in the Netherlands. So it is an assumption. This method of determination therefore also leads to problems in answering the question whether it occurs more in ME / CFS patients than in others.

At Questionnaire:

There has been discussion about the option to have the complaints scored on a scale. That is not done.
This is a limitation in the research.

Moreover, the outcome remains based on self-evaluation. We know that self-evaluation leads to impure answers. Objective and verifiable measures are therefore necessary, but they are missing.

The date of adoption of COVID-19 is requested. Then questions are asked on the basis of a number of questions about the current situation (more or less than last week). This can therefore differ enormously compared to the situation on the date determined, moreover, it does not give a picture of the initial situation before one was infected with the virus.

In short, I believe this study is characterized by weaknesses such that it cannot lead to substantiated conclusions.

One of the researchers was asked to respond to the above points on March 28. At the time of this publication (4/13/2020) I have not yet received a substantive response to these points.
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@Grigor

Andy · Oct 17, 2021

A roundtable of European Stakeholders and Policymakers, 9th June 2021

"Following joint planning sessions EMEA and EFNA (European Federation of Neurological Associations) are arranging a multi-stakeholder, roundtable meeting on Myalgic Encephalomyelitis (ME/CFS) in Europe.

The meeting will bring together a variety of initial stakeholders in Europe, including clinicians, researchers, policymakers, industry and patient representatives from EMEA's members, in order to create a better understanding of the many unmet needs and the devastating impact of ME/CFS on patients and families across generations.

The meeting will also include discussions on the implications of Long COVID - including similarities to ME/CFS."

....

"The roundtable will establish a forum that will form the basis for initiatives to be developed and maintained in the future by highlighting opportunities and solutions on how to fill the gaps in research, treatment and perception of ME and how to build the necessary infrastructure to make sustained progress and improve patients’ lives.

The forum is planned to be an ongoing event allowing more informed opinion about the disease to be created and solutions to be initiated as we build up the stakeholder group."

https://europeanmealliance.org/meineurt.shtml

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Andy · Apr 28, 2021

I don't know how the stakeholders are selected or can apply but @Michiel Tack , it would be good to see the European ME Coalition as part of this, and @cassava7 , is there any French group that could take part?

cassava7 · Apr 28, 2021

Andy said: ↑

I don't know how the stakeholders are selected or can apply but @Michiel Tack , it would be good to see the European ME Coalition as part of this, and @cassava7 , is there any French group that could take part?
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As far as I know, ASFC (the national association) is part of EMEA but they are inactive there. It seems that they do not have enough resources to focus on international advocacy efforts. I can't speak for Millions Missing France but they are much more involved in advocacy -- including internationally, their open letter last year is a good example -- so if they could be put in touch with EMEA, I think they would be happy to consider participating.

Andy · Oct 17, 2021

A thread on the EMEA Pan-European Survey is here.

Wyva · May 31, 2021

Wyva · Jun 8, 2021

strategist · Jun 11, 2021

Merged thread

This event is currently ongoing.

https://europeanmealliance.org/meineurtagenda.shtml

I joined when Sommerfelt was speaking about the invisibility of the illness and he really gets it.

Kalliope · Jun 9, 2021

Live tweets on twitter

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