Fifteen countries working together
Member of European Federation of Neurological Associations
Member of European Disability Forum
Read past newsletters click here
Select specific news items via the sidebar
News items from within EMEA and from outside.
Use the sidebar to select the categorisation of news items you require.
January 2026
Joining EPF marked an important step in strengthening EMEA’s presence within European health advocacy, creating opportunities to influence policy, build partnerships, and ensure that the perspectives of people with myalgic encephalomyelitis (ME) are represented in European healthcare discussions.
Germany has launched the National Decade Against Post Infectious Diseases (2026–2036)
More on the recent Serbian conference on ME and long covid - with links to videos and information
December 2025
Each year on 10 December, Human Rights Day marks the anniversary of the United Nations’ Universal Declaration of Human Rights (UDHR), adopted in 1948.
EMEA has written posed questions to the European Commission and received replies on Commission support for the Member States on ME/CFS research, data collection and medical education
November 2025
More than 1 billion people worldwide experience disability, and this number is growing, driven by increased numbers of people with noncommunicable diseases who are living with limitations in functioning. For people with ME this message is particularly urgent.
October 2025
All of the statements made by EMEA at the #RC75 congress.
Postural Orthostatic Tachycardia Syndrome (PoTS) - and its frequent co-existence with Myalgic Encephalomyelitis
September 2025
Switzerland’s Council of States health commission (SGK-S) Will Begin Work on their National Strategy for ME/CFS and Long Covid.
On World Patient Safety Day , EMEA joins the global campaign to promote this year’s theme - “Patient safety from the start!” — focusing on safe care for every newborn and every child.
EMEA Calls for the Inclusion of Myalgic Encephalomyelitis in the Implementation of the Political Declaration of the 4th UN High-Level Meeting on Noncommunicable Diseases
Improving Support for ME Patients: Spanish Proposals for ALS Law Inclusion
World Suicide Prevention Day was established by the International Association for Suicide Prevention and World Health Organization and other partners to raise global awareness and promote action to prevent suicides.
August 2025
Switzerland’s Council of States health commission (SGK-S) unanimously endorsed a motion to adopt a National Strategy for ME/CFS and Long Covid.
Severe ME: A Human and Economic Crisis Europe Can No Longer Ignore
July 2025
EMEA interviewed for EFNA Podcast Series on Brain Health Matters
June 2025
EMEA Lithuania discussion on the longstanding neglect of people with severe disability due to myalgic encephalomyelitis in Lithuania
EMEA is a member of the European Disability Forum (EDF) and recently took part in the EDF Annual Meeting in Vilnius, Lithuania, on 21–22 June 2025. EMEA joined discussions with key disability rights stakeholders and continued its work to highlight the situation of people with ME in Europe.
EMEA Netherlands ME Awareness - media pay special attention to the problems experienced by children with ME in the health care system.
May 2025
EMEA becomes a full member of the European Patients' Forum
On International ME AwarenessDay EMEA urges EU to work with EMEA and initiate a pan-European effort to resolve decades of issues with research/treatment of ME
This article draws on EMEA’s direct experience as a member of the Cochrane IAG
January 2025
EMEA Spain member, CONFESQ, will be launching a course in January specifically focused on Myalgic Encephalomyelitis.
A video (in Slovenian) regarding the activities of EMEA Slovenia during 2024
December 2024
More on the recent Serbian conference on ME and long covid - with links
International Day of Persons with Disabilities (IDPD) is a UN day that is celebrated every year on 3 December.
Sad news of EMEA board member Sture Eriksson
November 2024
A new milestone: Young EMERG/EMEA joined the Youth4Health initiative
European Parliament Meeting of the MEP Interest Group on Brain Health and Neurological Conditions
EMEA Presentation for EMEA Lithuania Conference on 11 November 2024
An opportunity for individuals affected by ME/CFS, Post-COVID, and other conditions triggered by infections to participate in a research study.
All of the statements made by EMEA at the #RC74 congress, along with EMEA videos submitted, and links to the WHO Europe's own congress page'
EMEA welcomes our latest Spanish member into the alliance
October 2024
The last EMEA statement to be read at 74th Regional Committee Meeting for Europe on the agenda item 12 Harnessing innovation for public health in the WHO European Region 2025–2030: preparing for a new strategy
EMEA statement at 74th Regional Committee Meeting for Europe on the agenda item Framework for resilient and sustainable health systems in the WHO European Region 2025–2030
EMEA statement at 74th Regional Committee Meeting for Europe on the agenda item European regional action framework for behavioural and cultural insights for equitable health, 2022–2027
Johanna Rohrhofer from EMERG member Dr Eva Untersmayr's group in Vienna will be EMEA's representative
EMEA statement at 74th Regional Committee Meeting for Europe on the agenda item discussing the State of Health in the WHO European Region
EMEA will be presenting at the session and issuing statements concerning ME at the congress which is being held in Copenhagen, Denmark.
September 2024
The European ME Alliance was invited by the Chair of the Lithuanian Parliamentary Commission for the Rights of People with Disabilities and the EMEA Lithuania Member Association ‘Independent Living’ to present at the Lithuanian Conference
June 2024
WHO Europe provide a supporting video for people with ME and for delegates to the International ME Conference Week events in UK in June.
May 2024
With the upcoming EU elections in June 2024 EMEA has written to all MEP candidates asking for support for ME and for EMEA initiatives.
Response to the 2023 Article in Scandinavian Journal of Public Health
We thought that a short video on some of the members' activities might be useful to share
April 2024
On World Health day 2024, the long-awaited findings of the European ME Alliance Pan-European ME Patient Survey, initiated in 2021, have finally been unveiled, painting a distressing picture of neglect and suffering endured by millions across Europe.
March 2024
EMEA are a member (and board members) of European Network of Neurological Associations (EFNA). Between 6 and 9 June 2024, millions of people in the European Union vote for Members to represent them in the European Parliament. EFNA has produced a manifesto for the elections.
Oct 2023
The European ME Alliance (EMEA) is proud to announce that it has received ‘official Non-State Actor accreditation’ status from WHO’s Regional Office for Europe during WHO Europe’s 73rd Regional Committee Meeting (RC73 that took place in Astana, Kazakhstan from 24-26 October 2023 .
Sep 2023
New members of EMERG are announced and an update on the EMERG application for EU Horizon funding for research into high burden, under-researched diseases - ME
The European ME Alliance, together with over 60 other organizations, has co-signed a statement to the United Nations urging its 193 Member States to implement specific actions on achieving health equity for persons with disabilities and older people
July 2023
A survey for people with ME conducted by Spanish researchers in EMERG.
March 2023
The European ME Research Group has formed Young EMERG - EMERGecr - a network of young or early career researchers for ME. A meeting will be held on 2 June in Cambridge, UK, with international delegates.
A full EMERG meeting will take place prior to the 12th Invest in ME Research Biomedical Research into ME Colloquium at the Wellcome Genome Campus in UK in May. New participants will join the meeting.
May 2022
The videos from this year's ME/CFS in the Balkans webinar are available.
December 2022
HO Global Report on Health Equity
September 2022
One can now watch a new video from EMEA Iceland - new Icelandic educational film about ME on vimeo. The film has Danish, English and Polish subtitles in addition to Icelandic subtitles so that it is also possible to use automatic text translation. The Icelandic name of the film means: The ME disease - exhaustion out on the edge, and refers to the fact that ME patients are marginalised in the health system and in the whole society.
June 2022
The videos from April's roundtable meeting on Myalgic Encephalomyelitis (ME/CFS) in Europe are available.
Research in the Netherlands - an update.
The Slovenian, Serbian and Croatian associations for ME/CFS and fibromyalgia have made a video about life with these diseases. People from the Balkans region are talking about how they feel and what they wish. It is a home made video but it is published with English subtitles.
EMEA is arranging the next multi-stakeholder, roundtable meeting on Myalgic Encephalomyelitis (ME/CFS) in Europe. This webinar will be - ME and post covid in the Balkans.
April 2022
ME/CFS in the Nordic Countries - a report from EMEA Nordic network. The report was produced based on last year’s EMEA Nordic network’s mini-survey and online meeting, arranged by EMEA Finland, the Medical Association of ME/CFS in Finland. The report maps health care and research in the Nordic region.
EMEA is arranging a multi-stakeholder, roundtable meeting on Myalgic Encephalomyelitis (ME/CFS) in Europe.
January 2022
The Finnish institute of health and welfare considers an illness chronic when it has a major impact on public health and the national economy through lowered working capacity and strains on healthcare.
December 2021
November 2021
Our German colleagues have informed us that there is currently a petition running in the German parliament for better research, healthcare and acknowledgement of ME/CFS.
October 2021
EMEA Netherlands - The ME/CFS Foundation - is one of the signatories to this manifesto and the Queen of the Netherlands opened the launch of the project.
The NICE guidelines development process has been paused and EMEA UK member has described the current situations since August 2021 as a debacle. Read more on this
Sept. 2021
A new video, Living with ME, from ME félag Íslands. It has subtitles in English and Icelandic
August 2021
Slovenia is the latest country to be represented in EMEA.
Latest Dutch group to join EMEA
EMEA has published the video of our recent webinar roundtable meeting with all presentations from the event.
An updated version of the Presentation given to Nordic Medical Days by EMEA Finland chairman Samuli Tani.
June 2021
The European ME Research Group (EMERG) has added new members to the team - from Norway, Serbia and Germany.
From the 1st EFNA/EMEA European Roundtable for Stakeholders and Policymakers webinar - The Realities of ME Last Post from Anne Örtegren
Warning - content may be upsetting for some
EMEA and EFNA are arranging a multi-stakeholder, roundtable meeting on Myalgic Encephalomyelitis (ME/CFS) in Europe.
May 2021
We invite European people with ME to take the EMEA pan-European ME survey - the first of its kind comparing the situation and experiences of ME-patients across European countries.
Some of the activities from EMEA members leading up to ME Awareness Day
April 2021
Recommendations for medical providers for ME/CFS testing and for treatments
EMEA Switzerland has launched a petition for a national strategy
March 2021
Serbia now represented as the latest full member of EMEA.
Research in the Netherlands - an update and a decision!
EFNA has launched the One Neurology campaign during #BrainAwarenessWeek - supported by EMEA
Presentation given to Nordic Medical Days
February 2021
New Finnish guidelines published
December, 2020
A new care service centre is to be opened in Norway for severely-affected ME patients.
by EMEA Norway NMEF
October, 2020
A press release issued by EMEA SPAIN member CONFESQ.
by CONFESQ
A virtual conference from Sweden is being organised by EMEA-SWEDEN RME.
by RME
October 2020
EMECC member Jesper Mehlsen and his treatment of a severely affected ME patient in Denmark
Dutch group becomes the latest full member of EMEA.
A chance to win up to €500 for the winner.
Spanish group becomes latest full member of EMEA.
September 2020
Dutch group becomes latest full member of EMEA.
Croatian group becomes latest full member of EMEA.
August 2020
Finnish group becomes latest full member of EMEA.
July 2020
The European Federation of Neurological Associations releases its survey on Stigma and Neurological Disorders
June 2020
The European ME Alliance Annual General Meeting will be in August
New initiative to Support the Work of European ME Research Group Researchers
from European Federation of Neurological Associations and the European Academy of Neurology
August 2019
A presentation made for recent conferences in Germany and Norway describing some of the work being performed by European ME Alliance and its members.
July 2019
Aspirations of Hope an award to the European ME Alliance to raise awareness of the impact of neurological disorders
WHEN THE NEED IS GREATEST, HELP IS ALMOST GONE Norway's ME association has made a 186 page report about the most serious ME sufferers.
June 2019
EMEA Finland member Suomen lääketieteellinen ME/CFS-yhdistys ry has helped form a parliamentary group for ME in Finland.
May 2019
Invest in ME Research held its annual ME Conference Week in London in May 2019. Apart from the annual research Colloquium and public Conference there was also another Thinking the Future conference for young and early career researchers.
September 2017
Finland’s Valvira removes recommendation for use of CBT and GET
March 2017
EMEA Organises Meeting in EU Parliament on Myalgic Encephalomyelitis
December 2016
The Disappearance, Continued Absence and Its Consequences of the Enforcement of the ICD-10 G93.3 Within the Linearization of the ICD-11 Public Beta Draft Version
November 2016
EMEA Writes to Members of the Danish Funktionelle Lidelser Working Group
June 2016
European ME Alliance Response to RFI Notice Number: NOT-NS-16-024 Request for Information: Soliciting Input for New Research Strategies for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME)
March 2016
EUROPEAN ME ALLIANCE REQUESTS RELEASE of PACE TRIAL DATA FOR INDEPENDENT REVIEW
EMEA Norway expresses concern over the content of a Seminar on the Sickest Organized by Norwegian Knowledge Centre
February 2014
Invest in ME Writes to Danish Health Minister
October 2015
A Future for European Research into Myalgic Encephalomyelitis
June 2015
EMEA PRESS RELEASE - For Immediate Release 21 June 2015 - European ME Alliance Joins European Federation of Neurological Associations
March 2015
Rights and benefits the EU brings to patients
October 2012
The members of the European ME Alliance have put forward a petition to the European Parliament in Brussels. EMEA feel there is an urgent requirement to address the perception, treatment and research into myalgic encephalomyelitis.
June 2012
Submission to DSM-5 Draft Proposals Submission – to the American Psychiatric Association on DSM-5 Somatic Symptom Disorders Category
March 2012
EMEA’s statement concerning the new German guideline on “tiredness”
November 2012
Invitation from the Danish Insitute for Human Rights to Dansk ME Forening to participate in panel discussions regarding how well and effectively the UN Disability Convention has been implemented in Denmark
October 2011
European ME Alliance welcomes ground-breaking research from Norway
August 2011
The European ME Alliance has written to The Times newspaper complaining about the recent article which allowed Professor Simon Wessely's views on ME to be publicised with little real analysis or objective comment. EMEA have written to the Times - the letter is below.
June 2011
Norwegian Directorate of Health has published views of reports from The Foundation for Scientific and Industrial Research at the Norwegian Institute of Technology (SINTEF Technology and Society) and Norwegian Knowledge Centre for the Health Services regarding current scientific evidence based knowledge status on ME.
The European ME Alliance welcomes the research by Fluge, Mella et al published on 19th October 2011 in Plos One.
The European ME Alliance members' comments on PACE
European ME Alliance Renew Call for Total Europe-Wide Ban on Blood Donation from People Diagnosed With ME/CFS
The European ME Alliance is a collaboration of ME organisations within Europe who have the common aim of promoting biomedical research into Myalgic Encephalomyelitis (known as ME or ME/CFS) and increasing awareness of this debilitating neurological illness.
Nov 2008
EMEA is formed
by EMEA
Please select all the ways you would like to hear from EMEA:
You can unsubscribe at any time by clicking the link in the footer of our emails. For information about our privacy practices, please visit our website.
We use Mailchimp as our marketing platform. By clicking below to subscribe, you acknowledge that your information will be transferred to Mailchimp for processing. Learn more about Mailchimp's privacy practices here.
by EMEA Norway NMEF
by CONFESQ
by RME
by EMEA