Improving Support for ME Patients: Spanish Proposals for ALS Law Inclusion
Several Spanish associations contributed to the Ministry of Health's public consultation on the inclusion of ME in the 2024 ALS law.
The public consultation, which was launched in February, is a significant step in the process of implementing the
Amyotrophic Lateral Sclerosis (ALS) Law, which was passed in October last year.
The law's primary objective is to enhance the quality of life for individuals affected by ALS and other
complex and irreversible neurological diseases. It also includes a list of neurological conditions that are
to be proposed, and the government has been given a year to consider and publish any additional conditions that
may be included on the list.
EMEA members ONG PEM and CONFESQ have independently proposed that ME be included in this list, because those affected by ME meet the criteria of the Law, as outlined below.
Framework of ME in Law 3/2024, of October 30 (ALS Law)
>A. It is considered to be an irreversible disease with a significant reduction in survival.
B. It does not respond significantly to treatment, or when there are no therapeutic alternatives that improve the functional status or prognosis of these people.
C. It requires complex social and health care, centred on the home and with a high impact on the immediate environment of the person.
D. It can progress rapidly, which may require the acceleration of administrative processes related to the assessment and recognition of disability or dependency.
The research conducted by ONG PEM aims to analyse the relevance of the ALS law in protecting individuals affected by Myalgic Encephalomyelitis. The document[1], available in both Spanish and English, can serve as a guide for other associations in Europe.
The Spanish society CONFESQ also submitted a proposal [2].
The ALS Law presents a valuable opportunity for Spain to initiate the implementation of the 2020 European Parliament Resolution , which urged all Member States to adopt with determination the measures necessary to ensure due recognition of ME: Application for funding for biomedical research on myalgic encephalomyelitis.
References
Last Update: September 2025