Persistent Disequilibrium in ME (Myalgic Encephalomyelitis)

Persistent disequilibrium is a significant and under-recognised symptom in Myalgic Encephalomyelitis (ME).
This page explains what it is, why it happens, how it differs from other conditions, and how it can be managed safely and effectively.

What Persistent Disequilibrium Feels Like

Patients commonly report:

• A constant sense of imbalance (rocking, swaying, or internal motion)
• Feeling pulled to one side, especially when upright
• Spatial disorientation without spinning (non-vertiginous)
• Worsening with standing, walking, head movement, or visual complexity
• No relief from reassurance or rest alone

Important:
This is not episodic dizziness. It is a continuous, physical symptom.

Underlying Mechanisms in ME

Persistent disequilibrium in ME is caused by multiple overlapping physiological systems:

1. Reduced Blood Flow to the Brain (Cerebral Hypoperfusion)

• Reduced circulation when upright
• Affects balance and spatial orientation centres
• Leads to ongoing imbalance rather than spinning vertigo

2. Autonomic Nervous System Dysfunction

• Impaired regulation of heart rate and blood pressure
• Reduced cardiac output when standing
• Causes unstable and inconsistent blood flow to the brain

3. Central Vestibular Dysfunction

• Poor integration of:
  • Balance signals
  • Vision
  • Body awareness

This may result in:

• “Walking on a boat” sensations
• Visual motion intolerance
• Difficulty in busy environments

4. Neuroinflammation

• Altered signalling in brain regions controlling balance
• Persistent sensory misinterpretation

5. Energy System Impairment

• Reduced cellular energy production
• Increased sensitivity to exertion

Symptoms often worsen with:

• Post-exertional symptom exacerbation (PENE)
• Infection or illness
• Poor sleep
• Overexertion

How This Differs from Other Conditions

Persistent disequilibrium in ME is often misdiagnosed. It is:

• Not BPPV – no brief spinning with position change
• Not Ménière’s disease – no hearing fluctuation
• Not anxiety-related – persists during calm and rest
• Not deconditioning – present even early in illness

Key Indicators of ME-Related Disequilibrium

Look for the following patterns:

• Improves when lying flat
• Worsens when upright
• Linked to orthostatic stress

Often accompanied by:

• Head pressure
• Visual disturbance
• Cognitive slowing (“brain fog”)

Management Approach (ME-Specific)

Core Principle

Do not attempt to “train” balance on an unstable system.

Treatment must focus on stabilising the underlying physiology first.

1. Pacing and Postural Management

• Break upright activity into short intervals
• Sit instead of standing wherever possible
• Schedule regular supine (lying flat) rest periods
• Avoid standing still for long periods

2. Circulatory Support

• Maintain regular fluid intake
• Use salt supplementation where appropriate
• Consider compression garments (especially abdominal)

3. Reduce Sensory Load

• Limit visual stimulation (screens, scrolling, busy environments)
• Use stable lighting and larger text when possible
• Avoid multitasking

4. Environmental Adjustments

• Minimise visual motion triggers
• Avoid excessive heat
• Maintain a calm, low-stimulus environment

5. Vestibular Rehabilitation (Use with Caution)

• Only if symptoms are stable
• Begin with very gentle, ME-aware protocols
• Use seated or supine exercises only
• Stop before symptoms worsen

Avoid:

• Balance boards
• Standing drills
• “Push through” rehabilitation approaches

6. Medical Support (Case-by-Case)

Depending on clinical assessment:

• Autonomic support medications may be used
• Migraine-related treatments may help central processing
• Avoid long-term use of vestibular suppressants

Why This Matters

Persistent disequilibrium is not a minor symptom. It:

• Indicates ongoing neurological and circulatory dysfunction
• Increases risk of falls
• Contributes to cognitive overload
• Reflects overall disease severity

Who This Information Is For

This guidance is intended for:

• People living with ME
• Carers and support networks
• Healthcare professionals
• Researchers and advocates

Overall Outcome

Understanding persistent disequilibrium as a physiological symptom of ME helps:

• Prevent misdiagnosis
• Avoid harmful treatment approaches
• Support safer management strategies
• Improve quality of life for affected individuals

Suggested Communication with Healthcare Providers

You may find it helpful to explain your symptoms like this:

“My balance issues aren’t spinning vertigo. They’re constant, worse when upright, and improve when I lie down. Standard vertigo treatments haven’t helped, which aligns with ME-related circulation and autonomic problems.”