Treatment and Management Strategies

Warning

The information below is an overview of available therapies, not medical advice. Treatment of these conditions is highly individualized and experimental. Never change medications without consulting a doctor.

ME/CFS

Pacing (Energy Management)

There is no cure for ME/CFS. The key is not to exceed the "energy envelope". Every exertion beyond your limits is a debt taken against the future.

Heart Rate Monitoring (HRM)

Using a heart rate monitor to avoid exceeding the anaerobic threshold. Helps manage energy objectively and avoid PEM.

Aggressive Resting

Resting BEFORE you feel tired. Lying in silence and darkness, without stimuli (phone, music), to regenerate the nervous system.

Avoid GET!

Graded Exercise Therapy in ME/CFS leads to permanent deterioration (PEM).

Symptomatic and Experimental Treatment

No Cure

Currently, there is no approved cure for ME/CFS. All therapies used are experimental or symptomatic and aim to improve quality of life.

  • LDN (Low Dose Naltrexone) An "off-label" drug that modulates the immune system and reduces brain inflammation (microglia).
  • LDA (Low Dose Abilify) Low doses of aripiprazole may have anti-inflammatory effects on the brain and modulate dopamine.
  • Mestinon (Pyridostigmine) Supports the parasympathetic nervous system (vagus nerve), may improve muscle endurance and reduce tachycardia.
  • Antivirals Used (often long-term) in patients with active infections (e.g., EBV, HHV-6). E.g., Valganciclovir.
  • Mitochondrial Support Supplements such as Coenzyme Q10, NADH, or D-ribose may support ATP energy production.

POTS (Dysautonomia)

Non-pharmacological Strategy

  • Increased salt and fluid intake (blood volume).
  • Compression garments (stockings/abdominal).
  • Sleeping with elevated head of bed.

Pharmacology

  • Beta-blockers Heart rate slowing (e.g., Propranolol).
  • Ivabradine Slows heart rate without lowering blood pressure.
  • Midodrine Constricts blood vessels, raises blood pressure.

MCAS (Calming the Reaction)

1

Foundation

Avoiding triggers (Low histamine diet, household chemicals, stress).

2

Blockade

H1 blockers (e.g., cetirizine, fexofenadine) and H2 blockers (e.g., famotidine).

3

Stabilization

Mast cell stabilizers (e.g., Ketotifen, Sodium Cromoglycate, Quercetin).

TCS & CCI (Mechanics)

Conservative Approach (Physiotherapy & Lifestyle)

  • Specialized Physiotherapy Focus on myofascial release and isometric exercises. Avoid traditional traction and aggressive stretching which can worsen instability.
  • Lifestyle Modifications Avoiding neck flexion (looking down at phones), heavy lifting, and positions that stretch the spinal cord (e.g., hamstring stretches in TCS).
  • Orthotics Cervical collars can be used diagnostically or for symptom relief. Long-term use leads to muscle atrophy.

Surgical Interventions

  • TCS: Section of Filum Terminale (SFT) A minimally invasive surgery where the tight filum terminale ligament is cut to release tension on the spinal cord. Often the first surgical step.
  • TCS: Spinal Shortening Osteotomy An experimental method (available in the USA) used in refractory TCS cases with recurrent adhesions (re-tethering). Involves removing a vertebral segment to physically shorten the spine and reduce cord tension.
  • CCI: Craniocervical Fusion (CCF) A major surgery fusing the skull to the upper cervical vertebrae (C0-C2) using screws and rods. Considered a last resort when neurological deficits are present.
  • CCI: PICL Procedure Injection of stem cells into the alar and transverse ligaments via the back of the throat (experimental, available in USA).