CONFESQ

Founded in 2004, CONFESQ is a national, non-profit coalition uniting more than 60 patient associations across Spain. It represents people living with Fibromyalgia, Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), Multiple Chemical Sensitivity (MCS), and Electromagnetic Hypersensitivity (EHS).

CONFESQ works to defend patients’ rights, strengthen recognition of these complex and disabling conditions, and improve access to appropriate healthcare, social protection, and legal safeguards. At national level, it serves as a strong and coordinated voice for people whose needs are too often overlooked.

Focus Areas

• National policy and institutional advocacy
• Defence and protection of patient rights
• Raising social and healthcare awareness
• Collaboration with national and international patient networks
• Promotion of research and knowledge on ME/CFS and related conditions

Working Together at European Level

As an active member of the European ME Alliance, CONFESQ:

• Contributes to joint EMEA advocacy and policy initiatives
• Shares knowledge and coordinates action with European partners
• Brings the Spanish patient perspective to collective European campaigns and policy work

KKey Activities & Initiatives

CONFESQ continues to advocate for full recognition of Myalgic Encephalomyelitis (ME) in Spain, with a focus on:

• Building networks between patients and medical professionals
• Promoting research into diseases characterised by PEM and chronic pain
• Supporting patients in managing complex, multi-system conditions
• Raising awareness of rare and under-recognised diseases

A recent milestone includes the development and dissemination of a documentary on Severe Myalgic Encephalomyelitis. This powerful awareness tool highlights the reality of the most severe and disabling forms of the disease. It has been used to open dialogue with palliative care and home-care professionals, advocating for appropriate, home-based support for people who are severely affected and bedbound.

CONFESQ also organises and participates in national and international conferences, webinars, and awareness events to ensure that patients’ voices remain visible and heard.

Support for Patients & Families

CONFESQ coordinates and supports its network of more than 60 member associations throughout Spain.

While direct patient support and family services are delivered locally by member organisations, CONFESQ strengthens this work by:

• Providing shared information and resources
• Facilitating coordination between associations
• Supporting national-level advocacy
• Building capacity within the patient community

Support for Healthcare Professionals

Improving professional understanding of ME is a key priority. CONFESQ:

• Organises training and educational activities for healthcare professionals
• Offers a specialised training course on Myalgic Encephalomyelitis (ME), developed in collaboration with experienced clinicians
• Works with medical societies and experts to deliver webinars, lectures, and educational sessions

Asociación de Personas con Encefalomielitis Miálgica PEM (ONG-PEM)

The Asociación de Personas con Encefalomielitis Miálgica ( ONG PEM) was created to provide Spain with an organisation dedicated exclusively to representing people with Myalgic Encephalomyelitis (ME).

Its mission is clear and focused: to distinguish ME from other conditions and comorbidities, and to challenge pseudoscientific narratives that have long obscured the reality of the disease. ONG PEM works to ensure that ME is recognised and addressed as the serious neuroimmune illness defined by international scientific criteria.

By grounding its advocacy in biomedical evidence, the organisation seeks to shift public, medical, and institutional understanding toward a more accurate and science-based framework.

Focus Areas

ONG PEM concentrates specifically on advancing ME advocacy within Spain. Its work includes:

• Monitoring national and regional policy developments
• Supporting awareness campaigns
• Promoting institutional and legislative change based on scientific evidence
• Ensuring ME is clearly distinguished from other conditions
• Advocating for appropriate clinical, legal, and social frameworks

The organisation’s goal is to secure proper recognition and structured support for people living with ME.

Working Together at European Level

ONG PEM collaborates actively with the European ME Alliance and contributes to its coordinated European strategy.

This includes:

• Supporting joint advocacy initiatives
• Aligning national efforts with broader European objectives
• Continuous engagement through Ona Albizu, who represents ONG PEM on the EMEA Executive Committee

This partnership strengthens a unified European advocacy landscape and is already contributing to constructive institutional dialogue. Together, these efforts aim to accelerate a long-overdue shift toward a scientifically accurate understanding of Myalgic Encephalomyelitis.

KKey Activities & Initiatives

Recent work includes:

• Advocacy toward the development of a national disability framework that accurately reflects the needs of people with ME
• Publication of informational materials and newsletters to increase public and institutional awareness
• Organisation of webinars, lectures, and patient-focused activities to strengthen community engagement

Through sustained advocacy and education, ONG PEM is building momentum for systemic change.

Support for Patients & Families

ONG PEM provides:

• Evidence-based patient guides and brochures
• Informational resources to support understanding and self-management
• Scientific documentation to assist patients during medical appointments, particularly where healthcare professionals may lack up-to-date knowledge or hold outdated assumptions about ME

These tools empower patients and families to advocate for appropriate care.

Support for Healthcare Professionals

To improve clinical understanding, ONG PEM offers:

• Educational materials grounded in internationally recognised ME diagnostic criteria
• Workshops, seminars, and training activities aimed at strengthening biomedical knowledge and improving standards of care