Severe ME: What You Don’t Say, What You Don’t See

Purpose: To shed light on the profound challenges faced by individuals with Severe/Very Severe Myalgic Encephalomyelitis (ME), emphasizing the physical nature of the illness and the need for accurate understanding and support.

Key Points:

1. Misinterpretation of Symptoms:
   • Severe ME symptoms are often dismissed or misinterpreted as psychological due to their invisibility and complexity.
   • Terms like “fatigue” oversimplify the severe, multi-system impacts of the illness.
2. Challenges in Articulating Symptoms:
   • Patients may struggle to identify and explain their symptoms due to cognitive impairments and the overwhelming nature of the illness.
   • Misdiagnosis as a mental health condition often results from the inability to articulate physiological mechanisms.
3. Severe Symptoms and Disability:
   • Profound noise sensitivity, muscle paralysis, POTS/dysautonomia, and extreme pain are among the disabling symptoms.
   • These symptoms often lead to isolation, invisibility, and misunderstanding.
4. Barriers to Support and Accessibility:
   • The nature of Severe ME makes it difficult to use standard disability aids or navigate assessment processes.
   • Patients may be unable to tolerate noise, light, touch, or movement, further complicating interactions and care.
5. Need for Medical Recognition:
   • A biopsychosocial approach undermines the physical suffering of Severe ME patients.
   • There is an urgent need for physiological explanations, medical respect, and a biomedical response.

Target Audience: Healthcare providers, caregivers, policymakers, and advocates seeking to understand and support individuals with Severe ME.

Overall Outcome: The document calls for greater recognition of the physical nature of Severe ME, advocating for accurate diagnosis, tailored support, and a shift away from dismissive attitudes. It highlights the profound challenges faced by patients and the urgent need for compassionate, informed care.