The statistics are dreadful. Almost four million Americans are estimated to suffer this chronic and debilitating condition (almost a million more were added as victims of “long” COVID). Of these millions, seven out of ten remain undiagnosed (“we don’t know what’s wrong with you”). And, since there are no specific diagnostic tests for ME-CFS, they endlessly hear, “your tests are normal”.
There are five major symptoms necessary to make a diagnosis of ME-CFS (since there is no way to make a laboratory diagnosis). These need to be present over six months:
- A profound sense of constant exhaustion (‘simple tasks can be overwhelming’; ‘I feel tired all the time’),
- Brain fog (confusion, disorientation, difficulty with word finding, and many variations of this),
- Orthostatic hypotension (POTS) (symptoms worse when rising from lying down to standing),
- Unrefreshing sleep,
- Muscle and joint pain.
However (and this is a BIG however), Katrina Berne, Ph.D. author of, “Running on Empty: The Complete Guide to Chronic Fatigue Syndrome”, through extensive patient interviewing accumulated this rather shocking list of ME-CFS reported symptoms:
ME/CFS Signs and Symptoms Checklist
[ ] Fatigue, characterized as a profound loss of energy
[ ] Worsening of symptoms after physical or mental exertion (post-exertional malaise, or PEM)
[ ] Cognitive function problems
[ ] Attention deficit disorder (inability to concentrate)
[ ] Feeling “spaced out” or “cloudy”, “brain fog”
[ ] Calculation difficulties
[ ] Memory loss
[ ] Spatial disorientation
[ ] Word searching or saying the wrong word
[ ] Sleep disturbance, unrefreshing sleep
[ ] Flu-like malaise, feeling “sick all over”, or “poisoned”
[ ] Sore throat
[ ] Low-grade fever or feeling hot often
[ ] Low body temperature
[ ] Muscle and joint aches with or without “trigger points”
[ ] Headache
[ ] Changes in vision
[ ] Numbness or tingling sensations
[ ] Loss of balance, dizziness
[ ] Unusually vivid dreams, nightmares, or lack of dreams
[ ] Depression
[ ] Anxiety, panic attacks
[ ] Personality changes
[ ] Mood swings
[ ] Difficulty moving the tongue to speak
[ ] Tinnitus (ringing in the ears)
[ ] Paralysis
[ ] Severe muscle weakness
[ ] Difficulty walking
[ ] Blackouts
[ ] Photophobia (light sensitivity), and increased sensitivity to noise, smells, touch
[ ] Alcohol intolerance
[ ] Changes in taste, smell, hearing
[ ] Decreased libido, impotence
[ ] Muscle twitches
[ ] Severe premenstrual syndrome (PMS) or exacerbation of symptoms before and during period
[ ] Weight changes, usually loss followed by gain
[ ] Painful, swollen lymph nodes, especially on the neck and underarms
[ ] Abdominal pain, diarrhea, nausea, gas, irritable bowel
[ ] New allergic reactions to medicines, food, and other substances
[ ] Night sweats
[ ] Heart palpitations
[ ] Uncomfortable or frequent urination
[ ] Rash of herpes simplex or shingles
[ ] Flushing, rash
[ ] Hair loss
[ ] Chest pain
[ ] Dry eyes and mouth (sicca)
[ ] Cough, dry
[ ] Canker sores
[ ] Cold hands and feet
[ ] Shortness of breath
[ ] Temperature and weather sensitivity
[ ] Symptoms worsen when standing up (orthostatic intolerance)
[ ] Seizures, usually petit mal, but sometimes grand mal
These, by the way, literally duplicate the reported symptoms of Long COVID.
CLASSIFICATION BY SEVERITY
SYMPTOMS SCALE
Not all patients experience the same severity of illness. As with any other disease, including the common cold, symptoms can be mild, moderate or severe. Patients often rate themselves on a 1-10 scale, with 1 being bedbound, and 10 fully recovered.
In addition, there are three general levels of illness: mild, moderate, and severe.
Mild: Patients are mobile, can care for themselves, do light housework and work part-time, or even full-time with the curtailment of all other activities. Mildly ill patients experience easy fatigability and loss of stamina and must plan their activities carefully.
Moderate: Patients have reduced mobility and are restricted in all activities of daily living. They have usually stopped work or school. Moderately ill patients feel exhausted after activities.
Severe: Patients are unable to do anything without assistance. They spend most of the day in bed and are sensitive to light and noise. Severely ill patients often feel as if they have the flu. Patients often are compelled to apply for disability, either through private insurance or Social Security and find themselves in the middle of a Franz Kafka novel. Their claims are repeatedly denied because they present “no positive tests”. They need to hire lawyers (this usually works) but remember, they’re fighting a battle while suffering fatigue and brain fog.
Patients may suffer relapses at any point in the illness. Even mildly ill patients may become severely ill during a relapse.
TOO OFTEN PATIENTS HEAR:
“I THINK YOU MAY HAVE CHRONIC FATIGUE SYNDROME, BUT I DON’T KNOW ANYTHING ABOUT IT.”
Well, at least that’s a start. 70% of ME-CFS patients never even get that far in terms of diagnosis.
But since there is no specific test for ME-CFS, the actual “official” diagnosis of ME-CFS is reached by a process of diagnosing and treating other conditions which may be present and where chronic fatigue can be a major symptom. There’s a long (but not impossibly long) list of these, including hypothyroidism, chronic Lyme, chronic mono (Epstein-Barr), vitamin deficiencies, adrenal fatigue, mold biotoxin illness, non celiac gluten sensitivity (see the Health Tip series “The Root Causes of Chronic Fatigue), treatment of any of which can ‘move the needle’ toward reduction of ME-CFS symptoms.
Here at WholeHealth Chicago, very frequently new patients filling out intake forms will write: “I’m tired all the time and doctors can’t figure out what’s wrong with me.”
We can probably help.
NEXT WEEK: Advances in the Treatment of ME-CFS
Be well,
David Edelberg, MD