Managing ME

Upon receiving a confirmed diagnosis of myalgic encephalomyelitis, managing symptoms requires a multi-step approach. To understand getting a diagnosis see our Do I Have ME? page.

“The pathophysiology of ME and laboratory findings must be reflected in all treatment/management programs. Adverse reaction to exertion accompanied by a prolonged recovery period must be respected and accommodated. All health-care personnel must be knowledgeable about ME.” ICP pg 13

A Personalized Management & Treatment section within the IC Primer begins on page 13.  Subsections include:

Pharmaceutical and non-pharmaceutical treatments are offered for the following symptoms:

Remove Pathogens and Toxins (pg 16)
– Microorganisms
– Toxins
– Heavy Metals

Replenish Nutrients, Restore Homeostasis, and Relieve Symptoms (pg 16)
– Cellular oxygenation
– Hydration
– Acid/alkaline balance
– Vitamins and minerals

Neurological (pg 17)
– Sleep disturbances
– See our Sleep Problems page for more information

Pain (pg 17)
– Possible pathological types/components
– See our Pain Management page for more information
– See our handout for Low Dose Naltrexone (LDN) information

Cognition and Fatigue (pg 17)
– Post-exertional neuroimmune exhaustion (P.E.N.E.)
– See also” “Avoiding an ME CRASH – aka P.E.N.E.” & our P.E.N.E. experience page
– Overload phenomena

Immune and Gastrointestinal (pg 18)
– Intestinal dysbiosis

Energy Metabolism and Ion Transport (pg 18)
– Orthostatic intolerance
Dysautonomia International offers information about diagnosis and treatment of dysautonomia as well as support groups around the world.

Urinary difficulties
– Neuroendocrine: Hypothalamic-Pituitary-Adrenal (HPA) Axis

Other Symptoms (pg 18)
– Altered mood
– Gynecological

This 2 pg Dr. Handout offers a path to introduce medical professionals to the wealth of information found in the ICP.

Coping with Symptoms, created by the public Facebook group, North Carolina/Ohio ME & FM Support group, offers tips on a variety of symptoms including:

  • Mold
  • Sleep
  • Flu-like feeling
  • Brain fog
  • Muscle problems
  • Exhaustion
  • Restless leg
  • Swelling ankles
  • Mouth sores/dry mouth
  • Sore throat
  • Stomach problems/irritable bowel
  • Nausea
  • Sweats
  • Irritable bladder/frequent urinary tract infections (UTI)
  • Fibromyalgia
  • Lymph gland swelling
  • Sinus problems
  • Light headed/weak/floor dipping feeling/dizziness
  • Brain racing/panic attack/anxiety
  • Skin rashes/hives
  • Bruising/anemia
  • Headaches
  • Osteopenia/osteoporosis
  • Hand pain
  • Sensitivity to light/sound/odors etc.
  • Tinnitus

Severe ME offers unique management of symptom challenges. See our Severe ME page for more information.

If an emergency room visit is required, the “EMERGENCY ROOM INFORMATION” document from North Carolina/Ohio ME & FM Support group (public on Facebook) may be helpful; as well as our Emergency Room Info for #pwME webpage.