WARSAW Meeting

The 9th Euromene Coast Action meeting was held in Warsaw on 26th June 2019 with a welcoming at the Ibis Warszawa Centrun Hotel by the local chairman  Pawel Zalewski.

The following meetings occurred:

• Core Group Meeting

• Modra Murovska
• Progress Report/Current situation
• Necessary activities till next meeting  in November, 2019
• Core group discussions
• Partecipants:
• Chair – Modra Murovska
• Vice-chair – Eliana Lacerda
• Grant holder - Uldis Berķis
• WG 1 Epidemiology – Fernando Estévez-López
• WG 2  Biomarkers – Carmen Scheibenbogen
• WG 3 Socio-Economics – Derek Pheby
• WG 4 Clinical Research – Jerome Authier
• WG 5 Conferences, seminars, training schools – Evelina Shikova-Lekova
• WG 6 Dissemination and exploitation, patient involvement, digitalisation – Lorenzo Lorusso
• STSM coordinator – Magdalena Budisteanu  

• Working Group 1  On Epidemiology Meeting Chaired by Fernando Estévez-López

1. Prevalence and incidence of ME/CFS in Europe: Systematic Review.
   (Fernando Estévez-López)
2. Protocols for biobanking in ME/CFS in Europe: biobanks creation,
   management and maintenance. (Kate Mudie)
3. Evaluating ME/CFS phenotype: recommendations for standardised
   methodology across European countries (report synchronised by
   Epidemiology, Clinical, Biomarkers and Clinical Research working groups).
   (Fernando Estévez-López)
4. Common ethical and legal framework for ME/CFS biobanking in Europe.
   (Kate Mudie and Fernando Estévez-López)
5. Final remarks. (Kate Mudie and Fernando Estévez-López)

• Working Group 3 On Socio-Economics Meeting Chaired by Derek Pheby

1. Welcome
2. Apologies for absence
3. Minutes of the previous meeting
4. Matters arising
5. Papers in preparation – update and discussion of way forward:
• State-of-the-art paper (from Deliverable 15) (Derek Pheby),
• Common consensus protocol (from Deliverable 16) (Derek Pheby),
• Analysis of socio-economic data in the UK ME/CFS Biobank database (Rachael Hunter),
• Latvian studies (disease register, patient-reported outcomes, etc) (Diāna Arāja, Uldis Berķis),
• Replication of Italian study in France (Jean-Dominic de Korwin),
• Economics of ME/CFS in Ireland (John Cullinan),
• EUROMENE experience in Italy: health policy implication (Elena Brenna, Lara Gitto),
• Other suggestions.

6. Deliverable 17 - Guidelines for health policy makers on prevention of adverse health and  economic impacts due to ME/CFS:
• Contribution of comprehensive literature searches to development of a prevention model for ME/CFS – proposed STSM (Dominic Trepel, Xia Wang-Steverding),
• Discussion of way forward – preparation of plan.
  
  
7. Any other business
   Date of next meeting (if any)

• Working Group 6 on dissemination and exploitation, patient involvement, digitalisation Chaired by Lorenzo Lorusso

1. Stakeholder involvement, the question regarding SMEs, (L.Lorusso)
2. Information on open calls on EU level, could be Horizon and all others responsibility for that (how will be responsible for information collection and placing on the web site), (L.Lorusso)
3. Booklet – may by to the end of CA15111 we should prepare something bigger that you have prepared now – some booklet, (L.Lorusso)
4. Spreading EUROMENE activities via TV and magazines, (L.Lorusso)