The second EMEA webinar - ME/CFS in Europe - was held on 8th April 2022.
With participation from WHO, NIH and CDC and others who would form the panel for discussions, this webinar was part of a continuing series of events that allow more informed opinion about the disease to be created and solutions to be initiated as we build up the stakeholder group.
These EMEA roundtables 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.

EMEA hope that this event will continue to expand education about ME and facilitate the actions that EMEA believe need to be taken.

Videos from the


1 World Health Organisation Keynote Speech:
Global Action Plan on Neurology and Epilepsy

WHO Director Devora Kestel
Universal Health coverage/Communicable and Non-communicable Diseases

Opening of the webinar.

Following the previous EMEA webinar, and at the request of WHO Director General Tedros Adhanom Ghebreyesus, Dr Tedros' office stated that many of the topics discussed at our roundtable in June 2021 (challenges faced by those suffering and their families, improving access to care and support, improving education/information, bottlenecks in research, treatment and services) would be addressed and included in the Intersectoral global action plan on epilepsy and other neurological disorders. As the draft of the action plan had been developed based on the input received on the discussion paper and outlined the scope, vision, goal, and strategic objectives as well as specific actions for Member States, the WHO Secretariat and international and national partners, then Dr Tedros had requested Ms Devora Kestel to engage with EMEA and arrange to present the draft action plan at the meeting.

2 Update on European Commission Planning in Brain Research Area

Update on EU Planning

An brief update on last year's presentation from EU director Dr Catherine Berens from European Commission's DG Research and Innovation, who was not able to join the meeting.

3 EMEA 2021 Survey of Patients In Europe

3 Arild Angelsen

An overview of the preliminary results from the EMEA European Patient Survey of 2021


4 Using SNOMED CT to Support Standardisation of Data Collection

4 Ian Green

SNOMED International describe their product that is used throughout Europe

5 A Model  Clinic for Severely Affected ME Patients

5 Ola Didrik Saugstad

Professor Ola Didrik Saugstad - from EMERG and Oslo University, Norway - describes the model for a clinic for severely affected people with ME that has been established in Norway. EMEA believes this is a model that can serve other countries and correlates with the theme of EMEA's strategy in having researchers, clinicians and patients collaborating and making progress in researching and treating people with ME.

An International View of Similarities Between ME and Long Covid

6 Markku Partinen

Professor Markku Partinen, of EMERG and University of Helsinki, Finland discusses the differences between ME and long covid using data from a recent international study in 17 countries.

Full video from Webinar

copyright©EuropeanMEAlliance all rights reserved
All videos here are copyright of European ME Alliance and may not be copied or reproduced without permission from European ME Alliance