PURPOSE

This document explains how breathing difficulties, swallowing problems, and neurological symptoms fit within the ME‑ICC (Myalgic Encephalomyelitis International Consensus Criteria) framework. It provides context for these symptoms, how they relate to ME as a multi‑system condition, and outlines practical management approaches.

KEY POINTS

1. ME as a Multi‑System Disease

• ME is a complex neuroimmune condition affecting multiple body systems simultaneously.
• Symptoms involving breathing, nerves, muscles, and swallowing can occur together, especially after exertion

2. Common Symptoms Covered

The document highlights several symptom groups associated with ME:

Breathing Difficulties (“Air Hunger”)

• Sensation of not getting enough air despite normal oxygen levels
• Linked to energy production issues and autonomic dysfunction

Swallowing & Chewing Problems

• Can result from neurological impairment, muscle fatigue, or autonomic dysfunction
• More common in severe cases (dysphagia)

Sensory & Nerve Symptoms

• Tingling, numbness, burning sensations, or “electric shock” feelings
• Classified as neurological sensory disturbances

Polyneuropathy

• Peripheral nerve involvement may occur
• Often overlaps with other conditions or comorbidities

Myoclonus (Muscle Jerks)

• Sudden involuntary movements or twitching
• Associated with neurological motor disturbances

3. Important Clinical Context

• These symptoms are recognised within ME but can also appear in other medical conditions.
• Clinicians may also consider:
  • Neuromuscular disorders
  • Autoimmune diseases
  • Nutritional deficiencies
  • Dysautonomia (e.g. POTS)
  • Medication effects

4. Symptom Patterns

• Symptoms often fluctuate based on energy levels and post‑exertional worsening (PENE/PEM).
• Many symptoms worsen with overexertion, stress, or poor sleep

5. Management Approaches

Core Strategy

• Pacing and energy management are central
• Aim to reduce crashes and nervous system overload

Breathing Symptoms

• Rest before symptoms escalate
• Use fluids, electrolytes, and positional support
• Gentle breathing exercises may help some individuals

Swallowing Issues

• Eat smaller, softer meals
• Sit upright and avoid rushing
• Seek medical help for severe difficulty or choking

Nerve Symptoms

• Reduce post‑exertional worsening
• Monitor key nutrients (e.g. B12, iron, vitamin D)
• Manage pressure points and positioning
• Medications may sometimes be used

Myoclonus

• Often worsens with poor sleep and overexertion
• Improved pacing and sleep protection may reduce frequency

6. Overall Approach in ME‑ICC

• Strict pacing and energy conservation
• Management of autonomic dysfunction
• Optimisation of sleep
• Treatment of related conditions
• Reduction of cognitive and sensory overload

TARGET AUDIENCE

• Patients living with ME
• Caregivers and support networks
• Healthcare professionals and clinicians
• Researchers studying ME and related conditions

OVERALL OUTCOME

This document reinforces that breathing, swallowing, and neurological symptoms are part of the broader multi‑system nature of ME. It highlights the importance of careful clinical assessment, pacing, and supportive management strategies to reduce symptom severity and prevent worsening.