Bone Loss Associated with Myalgic Encephalomyelitis (M.E.)

Purpose

This page explains how bone loss (osteopenia and osteoporosis) can develop in people with Myalgic Encephalomyelitis (M.E.), the contributing factors involved, and how bone health can be assessed and managed while respecting the limitations of the illness.

Key Points

1. Overview of Bone Loss in M.E.

• Bone loss can occur over time in people with long-term M.E.
• It may result from a combination of:
  • Reduced activity levels
  • Hormonal and physiological changes
  • Environmental and nutritional factors

2. Contributing Factors

Common factors that may increase risk include:

• Hormonal and autonomic dysfunction
  • Disruption of cortisol, thyroid, and sex hormones
  • Effects on bone metabolism
• Reduced sunlight exposure
  • Increased risk of vitamin D deficiency due to being housebound or bedbound
• Medication effects
  • Certain drugs (e.g. long-term steroid use) can accelerate bone loss
• Aging and menopause
  • Natural bone loss may occur alongside M.E., especially in postmenopausal women

3. Symptoms of Bone Loss

• Often no symptoms until complications occur
• Possible signs include:
  • Fractures
  • Height loss
  • Back pain (from vertebral compression fractures)
  • Changes in posture

4. Assessment and Diagnosis

Medical evaluation may include:

• Bone density testing (DEXA scan)
• Blood tests for:
  • Vitamin D
  • Calcium and related markers
  • Thyroid and hormone levels
• Additional tests if underlying causes are suspected

5. Importance of Proper Evaluation

• New symptoms should not automatically be attributed to M.E.
• Other conditions such as:
  • Osteoporosis
  • Arthritis
  • Neurological or vascular disorders
    should be properly investigated

6. Management Principles

Management must balance bone health with M.E. limitations, particularly avoiding post-exertional worsening.

7. Key Management Strategies

1. Monitoring

• Regular DEXA scans to track bone density
• Ongoing bloodwork and risk assessment

2. Nutrition

• Adequate intake of:
  • Calcium
  • Vitamin D
  • Protein
• Adjustments may be needed due to:
  • Appetite issues
  • Food intolerances
  • Difficulty preparing meals

3. Movement Within Limits

• Gentle, tolerable movement may help maintain bone strength
• Avoid aggressive exercise programs
• Activity must remain within individual pacing limits to prevent PENE

4. Fall Prevention

• Important due to:
  • Weakness
  • Balance issues
  • Orthostatic intolerance
• Measures may include:
  • Home safety adjustments
  • Mobility aids
  • Sitting for tasks when needed

5. Vitamin D and Sunlight

• Supplementation is often guided by blood levels
• Especially important for housebound patients

6. Medications

• May be prescribed depending on risk level:
  • Bisphosphonates
  • Denosumab
  • Bone-building therapies
• Treatment is individualized based on:
  • Bone density
  • Fracture history
  • Overall health

7. Treatment of Underlying Causes

• Address contributing conditions such as:
  • Hormonal imbalance
  • Nutritional deficiencies
  • Thyroid or parathyroid issues
  • Malabsorption or low body weight

8. Special Considerations in M.E.

• Standard osteoporosis advice (e.g. increased exercise) may not be appropriate
• Management must prioritise:
  • Avoiding symptom crashes
  • Staying within the individual’s energy envelope
• Even small, safe movements can be beneficial if tolerated

Target Audience

This information is intended for:

• People living with M.E.
• Carers and family members
• Healthcare professionals
• Researchers and advocates

Overall Outcome

This page highlights that bone loss in M.E. is a multifactorial issue requiring careful assessment and individualised management. Understanding these risks helps:

• Prevent fractures and complications
• Support safe, realistic treatment plans
• Balance bone health with energy limitations
• Encourage appropriate medical evaluation beyond M.E. alone

Key Summary Statement

Bone loss in M.E. is influenced by reduced activity, hormonal changes, and environmental factors, and requires careful, tailored management that protects both bone health and the patient’s energy limits.