EMEA News Q4 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 .

This status allows EMEA to participate in WHO Europe Regional Meetings and to make official statements on agenda topics of interest. In this way, EMEA aims to increase awareness, recognition, and action on ME/CFS by WHO Europe’s 53 member countries .

EMEA has issued an open statement to WHO Europe regarding the RC73 Agenda Item 7b: Progress Report on ‘Reaffirming commitment to health systems strengthening for universal health coverage, better outcomes and reduced health inequalities (EUR/RC68/R3)’ .

[Click here to view the EMEA statement]

A key message in our statement is that Myalgic Encephalomyelitis has been recognized as a neurological disorder by the WHO since 1969 under ICD-10 and ICD-11. Additionally, in 2015 the US Institute of Medicine issued a report confirming that ME/CFS is a real somatic disease to dispel the false belief that it is a psychosomatic illness.

As governments work to achieve universal health coverage, our statement urgently calls on WHO Europe and its Member States not to leave ME/CFS patients behind, and to:

• Officially recognize ME/CFS as a somatic illness as defined by the WHO
• Ensure people with ME/CFS are not marginalized and receive timely physical, economical, medical care, social services, and support
• Include the latest scientific evidence on ME/CFS in medical curricula because awareness and knowledge of the disease is dangerously insufficient
• Provide much-needed funding of biomedical research to establish an understanding of the aetiology, pathogenesis and epidemiology of ME/CFS leading to improved diagnostics, symptom management and efficacious interventions for patients
• Rapidly advance development of Centres of Excellence for ME/CFS, possibly in existing research parks where more extensive facilities exist to expand research.

EMEA will continue to advocate for the needs of ME/CFS patients at future WHO Europe meetings.

We congratulate the European Federation of Neurological Associations (EFNA), for also being granted official ‘accreditation’ status with WHO Europeand for submitting a written statement during the WHO RC73. EMEA is proud to be a continuing member of the EFNA Board.

We also take this opportunity to congratulate WHO on its 75th anniversary in 2023.

We look forward to fruitful collaboration with EFNA and WHO to decrease the burden of ME/CFS in Europe and beyond, and to increase the allocation of resources for initiatives like the ‘ European ME Research Group ’ to discover timely diagnostics, appropriate treatments, and a long-awaited cure for patients who cannot wait a moment longer.