Difficulty Swallowing (Dysphagia) in Myalgic Encephalomyelitis (M.E.)

Purpose

This page explains swallowing difficulties (dysphagia) in Myalgic Encephalomyelitis (M.E.), including the possible causes, symptoms, methods of assessment, and approaches to management. It highlights how dysphagia can arise from the multi-system dysfunction seen in M.E.

Key Points

1. What is Dysphagia in M.E.

• Difficulty swallowing is a recognised symptom in some people with M.E.
• Swallowing is a complex process involving:
  • Brainstem and neurological control
  • Cranial nerves
  • Muscles of the throat
  • Breathing coordination
  • Autonomic regulation
• Dysfunction in these systems can impair normal swallowing

2. Causes in M.E.

Swallowing problems may be linked to:

• Neurological dysfunction
• Autonomic nervous system impairment
• Neuromuscular fatigue
• Brainstem involvement
• Sensory processing abnormalities

These factors can disrupt coordination and control of swallowing

3. Common Symptoms

• Weak throat muscles
• Delayed swallowing reflex
• Sensation of choking or food “sticking”
• Difficulty coordinating breathing and swallowing
• Dry mouth or throat sensitivity
• Worsening symptoms during post-exertional exhaustion

4. Variability of Symptoms

• Symptoms may fluctuate over time
• Often worsen during periods of fatigue or symptom flare-ups
• Severity may not always be visible during medical assessment

5. Importance of Medical Evaluation

• Dysphagia can occur in many neurological or structural conditions
• It should always be properly assessed rather than assumed to be caused by M.E. alone
• Accurate evaluation helps identify risks such as choking or aspiration

6. Methods of Assessment

Assessment may include:

• Clinical swallowing evaluation
• Videofluoroscopic swallow study (barium swallow)
• Fiberoptic endoscopic evaluation of swallowing (FEES)
• Neurological examination
• Autonomic testing
• Esophageal tests if needed

7. Management Approaches

Management focuses on reducing strain and maintaining safe eating:

Swallow Therapy

• Techniques to improve swallowing safety
• Posture adjustments and pacing strategies

Energy Management

• Avoiding fatigue during meals
• Resting before eating
• Using smaller, more manageable meals

Dietary Adjustments

• Softer foods or modified textures
• Thickened liquids if required
• Avoiding difficult-to-swallow foods

Managing Contributing Factors

• Addressing autonomic dysfunction
• Treating reflux, dry mouth, or allergies
• Managing muscle fatigue and coordination issues

Hydration and Nutritional Support

• Ensuring adequate fluid intake
• Monitoring for weight loss or malnutrition
• In severe cases, considering assisted feeding methods

8. Risks and Monitoring

• Risk of choking or aspiration (food entering the airway)
• Potential complications such as pneumonia or weight loss
• Requires ongoing monitoring in moderate to severe cases

Target Audience

This information is intended for:

• People living with M.E.
• Carers and family members
• Healthcare professionals
• Speech and language therapists

Overall Outcome

This page highlights that swallowing difficulties in M.E. are linked to neurological, autonomic, and neuromuscular dysfunction. Recognising and addressing these issues can:

• Improve safety during eating
• Reduce risk of complications
• Support adequate nutrition and hydration
• Enhance overall quality of life

Key Summary Statement

Difficulty swallowing in M.E. arises from multi-system dysfunction affecting neurological control, muscle coordination, and autonomic regulation, requiring careful assessment and supportive management to ensure safety and wellbeing.