EMEA News Q2 2026

WHO Europe AI Stakeholder Consultation

WHO European Roadmap for AI in Health 2026-2033

Patient Advocacy in the Age of Artificial Intelligence

Defending recognition, safety and equity for people with ME as AI becomes embedded in European healthcare

About this article

EMEA's contribution to the WHO European Roadmap for Artificial Intelligence in Health (2026–2033) stakeholder consultation - setting out why AI governance must include the voices of patients with complex, under-recognised conditions such as ME.

5 May 2026
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The European ME Alliance has actively participated in the recent stakeholder consultation on the WHO European Roadmap for Artificial Intelligence in Health (2026–2033), contributing the perspective of people living with complex, under-recognised neurological diseases, including myalgic encephalomyelitis (ME).

As artificial intelligence becomes increasingly embedded in healthcare systems, it is essential to ensure that these technologies do not replicate or amplify existing inequities in diagnosis, treatment, and care.

For people with ME, the challenge is not only the illness itself, but also a long history of under-recognition, mischaracterisation, and inadequate care. AI systems - if trained on biased or incomplete data - risk reinforcing these patterns at scale.

At the same time, AI holds real promise: improving research, identifying patterns in complex diseases, and supporting clinicians in delivering better care. Our goal is not to resist innovation, but to ensure it is safe, ethical, and inclusive.

Artificial intelligence must not become another layer of invisibility for people with complex diseases. Done right, it can be part of the solution. Done poorly, it risks deepening existing harm.

Our key advocacy messages

01
Patient inclusion as co-designers, not just consultees
People living with complex and contested conditions must be actively involved in shaping AI systems that will affect their care - from design through to deployment and review.
02
AI must support - not replace - clinical judgement and patient care
Safeguards are needed to prevent AI from being used to reduce access to care, particularly for patients with complex or poorly understood conditions such as ME.
03
Bias and data gaps must be explicitly addressed
Without deliberate correction, AI may encode existing gaps in recognition and evidence, further affecting patients with conditions like ME where the evidence base has historically been underfunded and contested.
04
Transparency and accountability are essential
Patients must be able to understand how decisions affecting their care are made, especially when AI systems are involved. Black-box decision-making is unacceptable in healthcare.
05
Sustainability and responsibility in AI deployment
We have also called for greater awareness of the environmental impact of AI systems and the need for responsible, transparent use of digital infrastructure across health services.

Continuing advocacy

Although formal consultation phases may close, advocacy does not. We will be present at the WHO Europe Regional Meeting in October where the Roadmap on AI will be on the agenda. We will continue to engage with policymakers, clinicians, and researchers to ensure that the integration of AI into healthcare systems protects patients - especially those who have historically been overlooked, such as those with myalgic encephalomyelitis (ME, sometimes referred to as ME/CFS).

We are committed to

  • Advancing recognition of myalgic encephalomyelitis and related conditions across European health systems, research frameworks, and policy processes.
  • Promoting patient-centred, evidence-based care that reflects the realities of living with a complex, chronic neurological disease.
  • Ensuring that emerging technologies respect the realities and rights of patients — particularly those whose conditions have long been under-recognised.

Last Update: April 2026

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