There are deep, long-standing concerns within the patient and medical communities regarding how individuals with Very Severe ME are treated within some NHS settings. Families, advocates, and expert clinicians have frequently highlighted the profound risks that arise when complex physical conditions are managed primarily through a psychological or psychosomatic lens, such as Functional Neurological Disorder (FND). In the most severe cases, inappropriate care pathways, or the withdrawal of essential life-sustaining care, have been linked to devastating outcomes, including severe deterioration and tragic loss of life.
We call on the ME Association, Action for ME, 25% ME Group, and all other major ME organizations to urgently:
Establish a Dedicated Advocacy for Individuals Team: Create a team with salaried personnel specifically tasked with advocating for individual patients in NHS hospitals and at home who are facing severe medical crises (such as acute dehydration, malnutrition, or unmanaged severe pain) related to Very Severe ME. We propose that this team:
Collaborate for Impact: Include salaried professionals working alongside charity participants and volunteers.
Provide Legal and Medical Support: Access routine legal advice to enable legal representation for vulnerable patients, while coordinating specialist advice from trusted, expert ME clinicians.
Secure Vital Funding: Set up ring-fenced funding or targeted crowdfunders to cover essentials for individual cases, including independent medical second opinions, legal fees, and safe discharge planning.
Maintain Rigorous Records: Keep meticulous, consent-driven records of patient experiences and interventions.
Lead Regulatory Reporting: Manage formal reporting to the media, police, safeguarding teams, the Care Quality Commission (CQC), and other relevant authorities, while tracking all responses.
Campaign for Legislative Reform: Work energetically alongside lawmakers to secure urgent legislative changes. We need clear legal frameworks that prevent psychosomatic diagnoses (including FND) from being misapplied to physical illnesses in a way that overrides expert clinical guidance and causes preventable harm or death to patients.