A new milestone: Young EMERG/EMEA joined the Youth4Health initiative
Read on to discover how Young EMERG are forging ahead to build a new wave of research
and understanding about myalgic
encephalomyelitis
This year’s WHO Regional Committee for Europe has brought critical issues to the fore, with new voices taking an
active role in advocating for ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome) awareness, research,
and policy changes. Key players like the European ME Alliance (EMEA), the European ME Research Group (EMERG) and
Young EMERG (supported by WHO’s Youth4Health initiative) have gathered in Copenhagen to ensure ME/CFS
is seen as the major health challenge it is and to ensure youth engagement in health policy across Europe.
In 2023, EMEA received Non-State Actor (NSA) accreditation from the WHO's Regional Office for Europe,
marking a significant step forward for ME/CFS advocacy. This status allows EMEA and its representatives
to participate actively in WHO Meetings, ensuring ME/CFS is represented within WHO initiatives.
In addition, Young EMERG joined the Youth4Health network in 2024, which strengthens the bridge between ME/CFS
advocacy and health initiatives across Europe.
Together we advocate for WHO recognition and support
Representatives from EMEA (Gracemarie Bricalli (EMEA Switzerland) and Cathrine Engsig EMEA Denmark)), from EMERG (Jesper Mehlsen), and from Young EMERG (Johanna Rohrhofer) are advocating for WHO to officially recognise the seriousness of ME/CFS in Europe and to support a European strategy to push for:
- Official recognition of ME/CFS as a somatic illness as defined by the WHO
- Implementing WHO’s ICD Codes for ME/CFS in national health systems
- Ensuring sufferers are not marginalised, and receive timely physical, financial, medical, and social support
- Including the latest scientific evidence in medical curricula
- Developing disease registries utilising the most up-to-date diagnostic criteria
- Providing funding for biomedical research
- Rapidly advancing development of Centers of Excellence
During the NSA event, which centered on enhancing engagement opportunities to promote health in the WHO European Region, the agenda was presented in a private meeting with Dr. Hans Kluge, WHO Regional Director for Europe.
The Role of Youth in ME/CFS Advocacy
Representatives from EMEA (Gracemarie Bricalli (EMEA Switzerland) and Cathrine Engsig EMEA Denmark)),
from EMERG (Jesper Mehlsen),
and from Young EMERG (Johanna Rohrhofer) are advocating for WHO to officially recognise the seriousness of ME/CFS in
Europe and to support a European strategy to push for:
Representing the youth perspective at the conference, Young EMERG, as EMEA's first Youth4Health focal point,
will work closely with WHO.
Their work with Youth4Health connects early career researchers, advancing ME/CFS as a
critical health and research issue among Europe’s youth and helping foster long-term commitment to ME/CFS research,
care, and policy improvements.
Young EMERG, established in collaboration with EMERG, addresses the challenges young researchers face when
building careers in ME/CFS research. Limited funding, a lack of support networks, and scarce career transition
resources all hinder progress in this field.
Young EMERG provides early career researchers (ECRs) with access to
research networks and mentorship.
The group is essential for retaining talented researchers in ME/CFS and ensuring the field advances with coordinated, impactful studies across Europe.
Building synergies for ME/CFS
Through the Youth4Health network, WHO offers young people a platform to voice concerns and influence policy,
underscoring WHO Europe’s commitment to inclusive health policy.
By joining forces with Youth4Health, Young EMERG not
only amplifies ME/CFS issues within WHO discussions but also fosters a deeper understanding of the disease among youth
and healthcare stakeholders alike.
This partnership provides young researchers in ME/CFS with resources to
build collaborative, interdisciplinary research networks and advocate for funding during critical career transitions.
Shaping a Brighter Future for ME/CFS and European Public Health
As the active participation in WHO meeting continues, representatives from EMEA, EMERG, and Young EMERG are
dedicated to creating lasting change. By emphasising the urgency of ME/CFS recognition, this is a defining
moment for ME/CFS advocacy and a unique opportunity for young researchers to shape the future of ME/CFS research and care,
raising awareness across borders and generations to ensure a healthier, more inclusive Europe.
Get involved!
If you are interested in joining our initiatives, or would like to be notified about future events, do not hesitate to contact us. Together, we can drive ME/CFS research forward!
Contact / Join Young EMERG
Use the contact form below to join up with Young EMERG.
Please also provide any details of your research or your plans.
