The European ME Alliance (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, as an EDF member, joined discussions with key disability rights stakeholders and continued its work to highlight the situation of people with Myalgic Encephalomyelitis (ME, sometimes referred to as ME/CFS) in Europe.

Meetings with Key Stakeholders

At the event, EMEA met with:

• Markus Scherer, Rapporteur for the review of the European Union by the UN Convention on the Rights of Persons with Disabilities (UNCRPD), who confirmed that all people with disabilities, whether or not their illness is officially recognised, are protected under the UNCRPD. Any failure to uphold these rights is a violation of the Convention.
• Indrė Širvinskaitė, President of the Lithuanian Disability Forum (LDF), who explained that collaboration with LDF should be conducted through a patient organisation such as Independent Living. EMEA shared this information with Independent Living.
• EDF staff, who noted that Lithuania’s review under the UNCRPD is scheduled for August 2026.

• Recognition: ME has been classified as a physical neurological illness by the World Health Organization since 1969. However, in Lithuania, there is a lack of support and recognition for those with severe disability due to ME.
• Assumptions about Support: There is a widespread and false belief that humanitarian organisations are providing adequate support, which has led to a lack of action from public authorities.
• Awareness: In Lithuania, initiatives for training for health professionals and public authorities have not yet been implemented, and most officials remain unaware of ME.
• Stigma: Many ME patients do not receive social or welfare benefits and may face administrative penalties and stigma due to misconceptions about their illness.
• Medical Support: There are currently no recognised specialists in Lithuania with expertise in ME, and no diagnostic biomarkers exist. Patients are often told they are healthy and able to work, despite debilitating symptoms - or prescribed potentially harmful psychiatric treatments..

On 28 June 2025, the European Accessibility Act comes into effect. This Directive sets minimum accessibility standards across the EU and is legally binding, though national governments can implement stronger measures if they choose. More information is available on the EDF website.

EMEA continues to work with its partners to support the rights of people with ME and to promote the implementation of European and international disability rights standards. The organisation remains engaged with EDF and other stakeholders to address the challenges faced by people with ME in Lithuania and across Europe.