5 Myths of ME/CFSJanuary 6, 2018

Myth #1: ME/CFS is not real – or “all in your head.”

“There are now thousands of published studies that show underlying biological abnormalities in patients…It’s not an illness that people can simply imagine and it’s not a psychological illness.”

– Dr. Anthony Komaroff, Harvard University

FACT: ME/CFS has very clear and proven biological (not psychological) traits,

which include the following (as well as dozens of other measurable traits):

  • Low natural killer (NK) cell cytotoxicity and compromised immune response
  • Abnormal brain scans
  • Abnormal cognitive-evoked EEG brain maps
  • Up-regulated 2-5A antiviral pathways
  • Prominent activation of pro- and anti-inflammatory cytokines
  • Measureable reduced aerobic work capacity
  • Abnormal gut microbiome diversity
  • Metabolomics and bioenergetics abnormalities
  • Cardiovascular abnormalities

Myth #2: “You don’t look sick…”

“Being sick doesn’t mean you have to look a particular way… How is ‘sick’ supposed to look?”

–  Erin Migdol, The Mighty

Fact: Quality of Life for Patients with ME/CFS ranks the lowest when compared to other devastating diseases.

Published Quality of Life Scores

Source: Falk Hvidberg M, Brinth LS, Olesen AV, Petersen KD, Ehlers L (2015) The Health-Related Quality of Life for Patients with Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS). PLoS ONE 10(7): e0132421. https://doi.org/10.1371/journal.pone.0132421

Myth #3: There is no blood test for ME/CFS

“In fact, some standard laboratory tests do distinguish cases from matched healthy control subjects. More important, newer technologies (metabolomic, immunologic) reveal other clear differences between cases and controls, as shown next.”

– Dr. Zaher Nahle, Chief Scientific Officer, SMCI

Fact: Blood testing using personalized, modern analysis reveal serious abnormalities

Blood test result ‘Heat Map’ of ME/CFS patient

(Note: Bright colors indicate irregularities)

Myth #4: ME/CFS is caused by Depression/Anxiety

“Chronic illness can also threaten job security, relationships, and plans for the future. Any of those things can lead to depression. It’s a normal response to a bad situation.”

– Adrienne Dellwo, ME/CFS Advocate

Fact: Depression/Anxiety are the most common secondary responses to complex chronic diseases

Symptom Comparison of Diseases

Myth #5: Exercise cures ME/CFS

“That you can exercise your way out of this illness, that is just not true. You can exercise, but you have to be extremely cautious. It will not cure you…. If a doctor sends a patient to the gym to do endurance exercise, that’s going to be a disaster. Doctors do that all the time and these patients get much, much worse.”

– Dr. Nancy Klimas, ME/CFS Expert, Nova Southeastern University

Fact: Many studies show that ME/CFS symptoms get worse after exercise

ME/CFS Symptoms After Exercise Compared with Healthy Controls

Source: VanNess, JM; Snell, CR; Strayer, DR; Dempsey, L; Stevens, SR (June 2003), “Subclassifying chronic fatigue syndrome through exercise testing” (PDF), Medicine and Science in Sports and Exercise, 35 (6): 908–913,
Source: IOM (Institute of Medicine). 2015. Beyond myalgic encephalomyelitis/chronic fatigue syndrome: Redefining an illness. Washington, DC: The National Academies Press