CFIDS/ME/CFS Symptoms

Symptoms of Chronic Fatigue Immune Dysfunction Syndrome (CFIDS)/Myalgic Encephalomyelitis (ME)/Chronic Fatigue (CFS)

CFIDS/ME/CFS Symptom Checklist

From Jay Goldstein, MD, the CFIDS Association of America and from bits and pieces here and there!

I am including a combination of the CFIDS symptom list from three "sources," the first, from Dr. Jay Goldstein, because I happened to know that Dr. Goldstein is one of the "good guys."  Dr. Goldstein has done much to help our cause, not something I can say for many of the physicians "specializing" in CFIDS/CFS whom I've known personally.  I was saddened to discover that in April of 2003 Dr. Goldstein retired due to poor health. We owe Dr. Goldstein a huge debt of gratitude.  I remember a few informal and lengthy conversations that he and I had back in the heady years of the late '80's and early '90's and I was always struck by his intelligence, as well as his desire to help these "mysterious" patients find their way back to health.

Below is a huge amount of the questionnaire Dr. Goldstein would ask his new patients to fill out (found in one of his books on Chronic Fatigue Syndrome), synced with the CFIDS Association of America, as well as a few of my own gems.  (What?  I don't count???)   The percentages seen below correlate to numbers Dr. Goldstein saw in his own practice.  To complete the survey, you can rate the severity of your symptoms from 0 to 10, with zero being the least and ten being the greatest severity.  

One thing to understand about CFIDS is that while many people with very different illnesses experience some of these symptoms at one time or another, and many of them are felt constantly by those who are chronically ill with one of many different illnesses.   CFIDS patients differ, however, in that they experience most of these symptoms on a daily basis, with impacts ranging from moderate to severe for each one.  Cumulatively, the effects are for the most part absolutely devastating.  Finally, the "invisibility" of so many of the symptoms of this illness is a curse in and of itself because it makes it difficult for others to believe that there is a true illness working here, one that is fatal in too many instances, and rarely curable.

1. Fatigue (100%) - usually made worse by physical exertion, a worsening of symptoms following physical or mental exertion occurring within 12-48 hours of the exertion and requiring an extended recovery period. 2. Cognitive function problems (80%) attention deficit disorder inability to comprehend/retain what is read inability to calculate numbers memory disturbance spatial disorientation frequently saying the wrong word impairment of speech and reasoning 3. Psychological problems (80%) depression (secondary) anxiety personality changes, usually a worsening of a previously mild tendency emotional lability (mood swings) psychosis (1% 4. Other nervous system problems (100%) sleep disturbance headaches changes in visual acuity seizures numb or tingling feelings (including periferal neuropathy) disequilibrium lightheadedness - feeling "spaced out" frequent and unusual nightmares difficulty moving your tongue to speak ringing in ears (tinnitus) paralysis severe muscle weakness blackouts sensitivity to light, sounds and smells visual disturbances, including blurring, eye pain & the need for frequent prescription changes intolerance of alcohol, often from the smell of it across a room alteration of taste, smell, hearing dizziness and balance problems non-restorative sleep decreased libido twitching muscles ("benign fasciculations" or myoclonus) nocturia (excessive urination during the night) (50-60%) stiffness 5. Recurrent flu-like illnesses (75%) - often with chronic sore throat. 6. Painful lymph nodes - especially on sides of neck and under the arms (60%). 7. Severe nasal and other allergies - often worsening of previous mild problems (40%). 8. Weight changes - usually gain (70%). 9. Muscle and joint aches/pain with tender "trigger points" or Fibromyalgia (65%). 10. Abdominal pain, constipation, diarrhea, nausea, intestinal gas - "irritable bowel syndrome" (50%). 11. Low grade fevers or feeling hot often (70%). 12. Low body temperature. 13. Night sweats (40%). 14. Heart palpitations, irregular heart beat (40%). 15. Severe premenstrual syndrome - PMS (70% of women). 16. Rash of herpes simplex or herpes zoster (shingles). (20% or more). 17. Uncomfortable or recurrent urination - pain in prostate (20%). 18. Numbness, tingling and/or burning sensations in the face or extremities;  19. Dryness of the mouth and eyes (sicca syndrome) 20. Other symptoms: rashes and "super" sensitive skin (30-40%) hair loss impotence chest pain dry eyes and mouth cough TMJ syndrome mitral valve prolapse frequent canker sores cold hands and feet serious rhythm disturbances of the heart carpal tunnel syndrome pyriformis muscle syndrome causing sciatica thyroid inflammation various cancers (a rare occurrence) periodontal (gum) disease endometriosis dyspnea (labored breathing or hunger for air) on exertion easily getting out of breath ("dyspnea on exertion") symptoms worsened by extremes of temperature multiple sensitivities to medicines, food and other substances allergies and sensitivities to noise/sound, odors, chemicals and medications fainting sore throat frequently recurring, difficult to treat respiratory infections (40-60%) high cholesterol NOTE: There are, of course, symptoms which affect all, whereas some affect most.  However, I have to also add that there is a cultural bias here.  For example, mood swings are defined as one thing in one culture, yet something else in another culture.  In a Russian culture, for example, I'm pretty mild mannered, as is my husband, who comes from an Italian culture.  In an American culture, however, I'm at times considered "passionate," whereas hubby is considered "reserved."  Furthermore, if you are familiar at all with the dreaded SATS and even the IQ tests of the pre-80's era, there were great problems with this phenomenon of culture, so a bit of leeway is to be expected in this situation as well.  You've heard the joke, that the Episcopalians are "God's Frozen People?"  This I heard once from the head of the Anglican section of Newsweek magazine and I have YET to stop laughing.