Patient FAQ

Start by documenting your symptoms and how they limit your activities. The 2015 IOM/NAM criteria emphasize four features: substantial reduction in activity ≥ 6 months, post-exertional malaise (PEM), unrefreshing sleep, and cognitive impairment or orthostatic intolerance (OI).

• Track crashes/PEM (what triggered them, onset delay, duration).
• Try gentle pacing now—stay within your energy envelope to avoid worsening.
• Schedule a general medical workup to rule out other conditions (iron deficiency, thyroid disease, sleep apnea, autoimmune issues, etc.).
• Discuss orthostatic symptoms with a clinician; ask about active stand / NASA lean testing or referral for autonomic evaluation.
• Bring a simple summary (1–2 pages) describing symptoms against the IOM criteria and how your function has changed.

Unfortunately this is common. You deserve compassionate, evidence-based care. Practical steps:

• Bring concise documentation (symptom timeline, activity reduction, PEM examples, IOM summary). Keep it under two pages.
• Ask for specific evaluations: basic labs, sleep assessment, and OI screening if symptoms worsen upright.
• If dismissed, seek a second opinion—preferably a clinician familiar with ME/CFS or dysautonomia (see our directory).
• Consider bringing a supportive person to appointments and using patient portals for written follow-ups.
• If needed, request copies of your records and lab results to share with other clinicians.