Dispelling Myths: The Complex Causes and Evolving Treatments of ME/CFS and Long COVID

The following information was originally shared on March 13, 2025.

Five years into the COVID-19 pandemic, millions continue to grapple with Long COVID and ME/CFS—conditions plagued by misinformation that perpetuates stigma and inadequate care. In this double-feature installment of our Dispelling Myths series, we tackle two critical fronts: the biological roots of these illnesses and the dangers of outdated treatments. From viral triggers to harmful therapies, let’s separate fact from fiction. 

Myth #1: “The Causes Are Known—or All in Your Head”

Reality: While research is ongoing, evidence confirms these are physical, biologically rooted conditions: 

• 80% of ME/CFS cases follow infections (e.g., Epstein-Barr virus, Coxiella burnetii, SARS-CoV-2). 

• Long COVID is uniquely triggered by COVID-19, with studies linking it to immune dysfunction, metabolic disruptions, and genetic factors. 

• Both conditions share overlapping mechanisms, including immune system dysregulation and impaired stress response.

Dismissing these illnesses as “psychological” ignores the science and harms patients. As researcher Dr. Anthony Komaroff notes, “ME/CFS is as physical as diabetes or multiple sclerosis.” 

Myth #2: “Exercise and Positive Thinking Cure ME/CFS”

Reality: For decades, patients were prescribed harmful or ineffective therapies:🚫 Graded Exercise Therapy (GET): 

• Risks triggering post-exertional malaise (PEM), a severe symptom crash. 

• No longer recommended due to evidence of long-term harm.

🚫 Cognitive Behavioral Therapy (CBT) as a “Cure”: 

• Re-analysis of studies shows no objective improvement in physical function or work capacity. 

• Only 10% report subjective fatigue relief—akin to placebo effects.

What Actually Helps?

✅ Pacing: Activity management to avoid PEM crashes.

✅ Symptom-Specific Care: Targeting pain, sleep, and cognitive issues.

✅ Counseling for Coping (not curing): Mental health support for the emotional toll of chronic illness. 

While no cure exists, these strategies can improve quality of life. 

Join the Fight for Better Care

Arm yourself with evidence-based tools:

📧 Free Email Series: “Living with ME/CFS and Long COVID” offers guides on pacing, symptom tracking, and advocating for care.