MYALGIC ENCEPHALOMYELITIS (ME) is not a diagnosis to be given lightly. ME patients suffer a living death that is life changing and, in most cases, lifelong. These patients will need to avoid many activities a normal person would undertake. Due to the severe nature of the disease they will have to reduce or avoid interaction that is overstimulating, which may include interaction with people. The progression of the disease is not well understood but a significant percentage may become so ill as to require a caregiver to meet daily needs and a subgroup may require 24/7 care and tube feeding.
PRIORITY for any doctor treating an ME patient is having a good understanding of those things that will exacerbate the illness in order to be part of the solution and not part of the problem.
“The crucial differentiation between ME and other forms of postviral fatigue syndrome lies in the striking variability of the symptoms not only in the course of a day but often within the hour. This variability of the intensity of symptoms is not found in post viral fatigue states.” Dr. Melvin Ramsay
The goal is to maximize the patient’s ability to participate while preventing permanent deterioration into a severe state of suffering.
- IC Primer (webpage)
- ICC Diagnosis (webpage)
- Conditions to Rule Out (pdf)
- Communicating with your Doctor (webpage)
- IC Primer (webpage)
- Dr. Handout based on the ICPrimer (blog)
- Managing ME (webpage)
- Basics for Treating ME (pdf)
- Using a Pulse Oximeter Info Sheet (pdf)
- Treating Patients with ME Info Sheet (pdf)
- LDN Use in ME (pdf)
- ME Emergency Room Information (pdf)
- Severe ME (webpage)
- Pain Management (webpage)
- Mortality (webpage)
Specialists to Utilize for diagnosis and management of ME
Dysautonomia specialists are needed to diagnose the cause of orthostatic intolerance.
We recommend resources at Dysautonomia International and Standing Up to POTS
Note: Not all specialists will understand the unique challenges of treating something with ME including medication intolerance and danger of exercise.
The following handouts offer information specific to each specialty:
- ME Cardiologist Handout (pdf)
- Neurologist Handout (pdf)
- ME Immunology Info Sheet (pdf)