ME beheren
Upon receiving a confirmed diagnosis of myalgic encephalomyelitis, managing symptoms requires a multi-step approach. To understand getting a diagnosis see our Heb ik ME? pagina.
“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:
- Doelen
- 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)
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 Pijnbeheersing 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
– Dysautonomie 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
Deze 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
Ernstige ME offers unique management of symptom challenges. See our Ernstige ME-pagina 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.