Coordinated Spanish advocacy for ME with UN

Ongoing dialogue with health authorities

In recent months, these organisations have focused on maintaining direct exchanges with policymakers. This has included a series of formal communications from CONFESQ to the Ministry of Health, alongside continued exchanges and institutional contacts maintained by ONG PEM within the same process, contributing to a more structured and continuous dialogue around ME.

A key aspect of this work has been its focus. Rather than limiting advocacy to calls for formal recognition, organisations have sought to frame ME more broadly - as a matter of public health responsibility, patient rights, and institutional accountability.

Within this context, recent proposals have addressed practical areas such as clinical pathways, professional training, and the coordination of care within the Spanish National Health System. These contributions are helping to move discussions from general awareness towards more concrete measures.

Combining institutional work and wider outreach

Alongside formal discussions at national level, advocacy efforts have also taken place through other channels. Organisations have continued to engage with regional administrations and local actors, reflecting the decentralised nature of the Spanish healthcare system.

This outreach has also involved the active engagement of members and patients, reinforcing the link between institutional advocacy and community participation.

This combination of approaches - structured institutional dialogue together with broader outreach - has allowed advocacy to develop across different levels of decision-making. It also reflects the reality that improvements in care depend not only on national strategies, but on how these are implemented in practice.

The role of patients and carers

An important part of this work has been the involvement of patients and carers. ONG PEM, in particular, has actively encouraged participation from its members and the wider community, as part of a broader mobilisation strategy linked to the advocacy process, reinforcing the role of patient voices in shaping advocacy efforts.

For people living with ME, this is not straightforward. The nature of the condition often limits the ability to engage consistently. Even so, patient-led contributions remain central to ensuring that policies reflect lived experience.

This continued involvement highlights a broader point: that progress in ME depends not only on institutional recognition, but also on sustained input from those directly affected.

A complex and evolving response

Taken together, these efforts point to a more coordinated approach to advocacy. At the same time, they underline the complexity of the challenge.

Addressing ME requires more than policy commitments at national level. It also involves building knowledge among healthcare professionals, improving coordination across services, and ensuring that systems are able to respond to patients with varying levels of severity.

The approach being developed in Spain - combining structured political engagement with concrete proposals - reflects a broader need across Europe for sustained, coordinated action on ME.

Links to developments across Europe

The work in Spain is part of a wider shift taking place across Europe. In several countries, there is increasing attention to ME, including developments in research, care structures, and national strategies.

Recent initiatives in Germany and Switzerland point in a similar direction: a gradual move towards more coordinated responses that combine policy, research, and clinical practice.

Within this context, the role of the European ME Alliance is to support alignment between national efforts and to promote shared priorities at European level.

Looking ahead

Although the final UN Political Declaration did not include a specific reference to ME, organisations involved in the process consider that the meeting has still had an impact.

It has contributed to raising visibility and strengthening connections between national and international advocacy efforts. It has also helped to consolidate a more structured framework for continued engagement at both national and European levels.

For Spanish organisations, the work now continues: building on this dialogue, refining proposals, and working towards more consistent recognition and care for people living with ME.