European ME Alliance

A poster regarding dtatistics relating to myalgic encephalomyelitis (ME) and the upcoming United Nations implementation of the Political Declaration of UNHL4

As UN prepares its Political Declaration for 4th High-Level Meeting on NCDs has requested the inclusion of Myalgic Encephalomyelitis #mecfs in its implementation and for it to be recognised in global health strategies

europeanmealliance.org/news-Q32025-... #UNHLM4 #DisabilityRights

Banner with Swiss flag and red background

Switzerland is putting in place one of Europe’s first national strategies specifically dedicated to improving care and research for ME/CFS and Long Covid
www.europeanmealliance.org/news-Q32025-...
#mecfs #Longcovid #EuropeanMEalliance

#WorldPatientSafetyDay
EMEA highlights the need to see, hear, protect even the most invisible children-those with a disease still too often ignored - Myalgic Encephalomyelitis #mecfs
www.europeanmealliance.org/news-Q32025-...
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On #WorldPatientSafetyDay EMEA calls for children’s safety and care
Every child deserves to be believed and supported - Patient safety from the start
www.europeanmealliance.org/news-Q32025-...

#ChildHealth #SafetyFirst #mecfs
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This is a patient safety issue. Children with ME need to be believed, supported, & given care adapted to their needs to help avoid more severe disability levels
www.europeanmealliance.org/news-Q32025-...
#WorldPatientSafetyDay
#ChildHealth #SafetyFirst #mecfs

Children with Myalgic Encephalomyelitis (ME, sometimes referred to as #mecfs) are too often overlooked. Missed school, lost friendships, & families doubted are real risks
www.europeanmealliance.org/news-Q32025-...

#ChildHealth #SafetyFirst #WorldPatientSafetyDay
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#WorldPatientSafetyDay
EMEA highlights the need to see, hear, protect even the most invisible children-those with a disease still too often ignored - Myalgic Encephalomyelitis #mecfs
www.europeanmealliance.org/news-Q32025-...
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ME must be explicitly included in UN & WHO global NCD strategies
Recognition is first step toward accountability & action
European ME Alliance is pressing for change-because people with #MECFS should not wait any longer
www.europeanmealliance.org/news-Q32025-...
#UNHLM4 #DisabilityRights #EUHealth

ME affects an estimated 240 million people worldwide
In Europe, the average wait for diagnosis is 7 years
-Delays and disbelief worsen disability.
-This is not just a health issue—it is a human rights issue
www.europeanmealliance.org/news-Q32025-...
#MECFS #UNHLM4 #DisabilityRights

As UN prepares Political Declaration for #UNHLM4 on NCDs, we urge Member States to:
- Recognise #mecfs as a disabling NCD
- Fund strategy of biomedical research & safe care
- Ensure disability & social protections
- Train clinicians/expand telemedicine
#DisabilityRights

People with #mecfs are among most vulnerable
Too often misdiagnosed, disbelieved, denied support
Many are house- or bedbound, unable to care for themselves or defend their rights
Yet ME is absent from global health policy
www.europeanmealliance.org/news-Q32025-...
#MECFS #UNHLM4 #DisabilityRights

EMEA fact poster

As UN prepares its Political Declaration for 4th High-Level Meeting on NCDs, Myalgic Encephalomyelitis (ME) remains invisible
@Euromeall challenges this neglect - calling for ME to be recognised in global health strategies
www.europeanmealliance.org/news-Q32025-...
#MECFS #UNHLM4 #DisabilityRights

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#youngEMERG consists of early career researchers from the UK, Austria, Norway, Spain and Germany 🌍 We are passionate about making a difference in the #MECFS community by working collaboratively to drive the ME/CFS research further and support young researchers in the field 🔬

👋 Meet young EMERG and get to know us!

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#youngEMERG is part of European ME Research Group (EMERG), a network of researchers from across Europe focused on advancing knowledge and understanding in #MECFS.

youngemerg.com/aboutus.shtml

#WorldSuicidePreventionDay
Changing the Narrative on Suicide
Healthcare professionals play key role in suicide prevention for people with #MECFS
Yet risk signs are missed
Recognition, referral, stigma reduction can save lives
www.europeanmealliance.org/news-Q32025-...
#EUHealth 3/3

One of the top 3 causes of death in people with #MECFS :-https://www.tandfonline.com/doi/full/10.1080/21641846.2025.2543201?src=
Recognition & evidence-based care are urgent public health priorities
www.europeanmealliance.org/news-Q32025-...
#WorldSuicidePreventionDay #EUHealth 2/3

Sensitive topic
#WorldSuicidePreventionDay
#MECFS - a serious neuro-immune disease.
69% cannot work, 25% are house- or bed-bound.
Stigma, lack of treatments, isolation, societal neglect drive suicide risk well above population norms
www.europeanmealliance.org/news-Q32025-...
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European flags on a blue background for EMEA's call for action from EU

ME is a too often ignored humanitarian crisis in many European countries
Today is #WorldHumanitarianDay – EMEA has called for EU to:
-Use proven EU mechanisms
-Fund & formalise existing efforts
-Treat ME/CFS as a legitimate public health challenge

www.europeanmealliance.org/documents/eu...
#mecfs

Swiss flag

Switzerland Advances National Strategy
on ME and Long Covid

www.europeanmealliance.org/news-Q32025-...
#mecfs #Longcovid

Act4Dys: The EU initiative addressing urban mobility challenges. - eLearning platform to explore inclusive mobility and climate action - Training package for youth trainers to support disability-inclusive urban development - ePortfolio of good practices in urban mobility and development Sign up to the newsletter to not miss project updates Project co-funded by the European Union Project partners: - CARDET (Centre for Advancement of Research and Development in Educational Technology) - Proportional Message - Innovation Training Center (ITC) - European Disability Forum (EDF) - Spectrum Research Centre (SRC)

Urban mobility and development should be sustainable and inclusive!

That's what our project #Act4Dys is about!

We work to improve awareness, accessibility and sustainability, while empowering youth engagement and education.

More info in our newsletter: act4dys.eu

EMEA Press Release

Severe ME - European ME Alliance's practical and achievable proposal for taking action for this Human and Economic Crisis that Europe Can No Longer Ignore

www.europeanmealliance.org/documents/eu...
#mecfs #SevereME #research

EMEA logo of European countries and highlighting EMEA's action plan

EMEA's proposals the EU can take now-with existing tools:
✔️ Fund EU-level ME impact study
✔️ Coordinate research via @euromeresearch & @YoungEmerg
✔️ Provide open-access training for clinicians
✔️ Include ME in disability policy frameworks
www.europeanmealliance.org/news-Q32025-...
#SevereMEDay
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A man and woman affected byt he consequences of myalgic encephalomyelitis

❗Patients too often told it is “all in their head”
#MECFS-a serious neurological disease (WHO ICD-11: 8E49)
Average diagnosis - 𝟲.𝟴 𝘆𝗲𝗮𝗿𝘀
Harmful therapies, lack of training, and no care pathways leave patients isolated, healthcare systems overwhelmed
#SevereMEDay
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Facts about the effects of myalgic encephalomyelitis on citizens and on economies

💜 Over 2 million Europeans live with ME
🛌 25% are house-or bedbound, often for decades
📉 Billions are lost in disability claims, productivity, and delayed care

This is more than a health crisis — it is also an economic crisis hiding in plain sight
#MECFS #SevereMEDay
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A woman affected by the consequences of myalgic encephalomyelitis - ignoring ME/CFS leads to severe disability

August 8th- a moment to spotlight a disease that devastates lives and drains economies

𝗠𝘆𝗮𝗹𝗴𝗶𝗰 𝗘𝗻𝗰𝗲𝗽𝗵𝗮𝗹𝗼𝗺𝘆𝗲𝗹𝗶𝘁𝗶𝘀 (ME, also known as #MECFS) affects 2 million+ in Europe

EMEA has practical, achievable proposals the EU can adopt now:
#SevereMEDay
Read on
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An image of hands of patients seeking help reaching out over a map of Europe - European ME Alliance, the voice for ME in Europe

In May the European ME Alliance was accepted as a full member of the European Patients' Forum (‪@eupatientsforum.bsky.social‬), the leading umbrella organisation representing patients across Europe
www.europeanmealliance.org/news-Q22025-...
#mecfs

🎙️ In the latest episode of the #BrainHealthMatters podcast we're exploring the invisible battles faced by people living with neurological conditions. | European Federation of Neurological Associa... 🎙️ In the latest episode of the #BrainHealthMatters podcast we're exploring the invisible battles faced by people living with neurological conditions. Among our guests is Gracemarie Bricalli, Presiden...

EMEA are members of European Federation of Neurological Associations (@efna.net).
In the latest episode of the EFNA #BrainHealthMatters podcast the invisible battles faced by people living with neurological conditions are explored - and EMEA contributed this -
www.linkedin.com/posts/efna_b...
#mecfs

EMEA Lithuania discussions on the longstanding neglect of people with severe disability due to myalgic encephalomyelitis in Lithuania]
www.europeanmealliance.org/news-Q22025-...
#MECFS

EMEA Participated in the European Disabilities Forum Annual Meeting, Vilnius, June 2025
www.europeanmealliance.org/news-Q22025-...
#mecfs

Key messages from the European ME Alliance Pan-European Patient Survey

𝐈𝐧𝐭𝐞𝐫𝐧𝐚𝐭𝐢𝐨𝐧𝐚𝐥 𝐌𝐄 𝐀𝐰𝐚𝐫𝐞𝐧𝐞𝐬𝐬 𝐃𝐚𝐲

On #InternationalMEawarenessDay EMEA urges the #EU to work with EMEA and initiate a pan-European effort to resolve decades of issues with research and treatment of ME

europeanmealliance.org/emea-meaware...
#mecfs #InternationalMEawarenessDay #MedEd