Managing ME – ME International

Håndtering af ME

Managing ME is similar to managing symptoms of Multiple Sclerosis. See a comparison HER.

Upon receiving a confirmed diagnosis of myalgic encephalomyelitis, managing symptoms requires a multi-step approach. To understand getting a diagnosis see our Har jeg MIG? side.

“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:

Goals
Guidelines
Medication Principles and Caveats
Revise Life-Style: Patient Self-Help Strategies
Education and Personal Development
Maximizing Sleep
Nutrition, Diet and Hydration
Energy Budget/Bank (monitoring heart rate)
- Free pulse oximeter for MEI members
- Info for using a pulse oximeter

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 PENE” & 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

Svær 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.