CFS/ME is not understood by most medical professionals because it lacks:

• Definitive Tests
• Definitive Treatment Plans
• Consistency of presentation from patient to patient for those assigned to this group

One major challenge for front line physicians is they have three patients with similar symptoms, when a fourth one arrives with different symptoms – it throws them into a loop. The CDC and health providers like Kaiser Permanente are slowly working to re-educate physicians (remember it tooks 30 years to re-educate physicians that stomach ulcers were caused by H. Pylori (a bacteria) and not because the person worried too much!). This issue has been made worst from evangelism to MDs of bad science. I like it that the Centers for Disease Control is now emphasising ” Myalgic encephalomyelitis”[pain with inflammation of central nervous system] which should help with changing perceptions. It is matching the neurological classification of ME in the World Health Organization’s International Classification of Diseases (ICD G93.3). 

This is even worst with the general with common misconceptions such as “yuppie flu” and “I get tired too”. In some cases, it has been deemed to be burnout, although a 2019 study found this to be false.

The most common peri-onset events reported by subjects were infection-related episodes (64%), stressful incidents (39%), and exposure to environmental toxins (20%)… At the time of survey, 47% were unable to work and only 4% felt their condition was improving steadily with the majority (59%) describing a fluctuating course. Ninety-seven percent suffered from at least one other illness: anxiety (48%), depression (43%), fibromyalgia (39%), irritable bowel syndrome (38%), and migraine headaches (37%) were the most diagnosed conditions. 

Rates of unemployment can be as high as 81% (7) while ~25% of patients may be homebound or bedridden … the median rate of full recovery is only 5%

Onset Patterns and Course of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. [2019]

The results indicated that chronic fatigue and burnout should be perceived as 2 distinguishable constructs in the academic context. “

THE RELATIONSHIP BETWEEN CHRONIC FATIGUE SYNDROME, BURNOUT, JOB SATISFACTION, SOCIAL SUPPORT AND AGE AMONG ACADEMICS AT A TERTIARY INSTITUTION [2019]

Last Wednesday, I attended a lunch with the Seattle CFS/ME group. Despite some of the people having had the conditions for over 30 years, now being confined to wheel chairs – the conversation revealed that they were not aware of all of the symptoms (they had some classic CFS symptoms and were not aware that they were CFS associated).

Symptom List

This list (with references) is associated with chronic fatigue syndrome a.k.a.
Myalgic encephalomyelitis. My view is that these diagnosis is a reflection of a microbiome dysfunction. Many CFS patients have gone into temporal full remission from a fecal matter transplant. With this view, we also have a list of symptoms that may be associated with a microbiome dysfunction. This is only a partial list.

Sources: [2015] , [2011] ,[2011] [1987] [1993] [2009]

• ‘small heart’ with small left ventricular chamber and poor cardiac performance in patient subsets
• 10% reduction in grey matter volume
• abdominal pain,
• abnormal growth factor profiles,
• air hunger,
• altered control and reduced cortisol production
• arthralgias and ‘gelling’ (stiffness),
• ataxia
• auditory learning reduced
• autonomic dysfunction
• awaken feeling exhausted regardless of duration of sleep,
• awaking much earlier than before illness onset,
• bloating,
• brain stem hypometabolism
• cardiac and left ventricular dysfunction 
• cerebrospinal fluid proteomes distinguish patients from healthy controls
• cervical and/or axillary lymph nodes may enlarge or be tender on palpitation
• chronic cough(40%),
• cognitive dysfunction
• cold extremities
• day-time sleepiness
• decreased cortical blood flow
• decreased natural killer cell signalling and function,
• decreased neutrophil respiratory bursts and Th1,
• depression,
• difficulty processing information
• extreme pallor or Raynaud’s Phenomenon
• fatigue of chest wall muscles
• faucial injection and crimson crescents may be seen in the tonsillar fossae, which are an indication of immune activation.
• feeling unsteady on feet,
• Fibromyalgia
• frequent awakenings,
• headaches
• hypoperfusion 
• immediate recall reduced
• immune dysfunction
• impaired depth perception
• impairment in attention and motor functioning (50%)
• impairment in speed information processing and executive functioning (40%)
• inability to focus vision,
• inability to tolerate an upright position – orthostatic intolerance, neurally mediated hypotension,
• increases in inflammatory cytokines,
• insomnia,
• irritable bowel syndrome
• Joint hypermobility
• laboured breathing,
• light-headedness/dizziness
• low blood pressure and exaggerated diurnal variation
• low threshold of physical and mental fatigability (lack of stamina) results in a substantial reduction in pre-illness activity level.
• marked diurnal fluctuations;
• marked, rapid physical and/or cognitive fatigability in response to exertion,
• moons of finger nails may recede.
• mottling of extremities,
• muscle weakness,
• nausea,
• neuroendocrine and immune symptoms
• neuroimaging studies report irreversible punctuate lesions
• neuroinflammation of the dorsal root ganglia
• nocturia
• pain,
• palpitations with or without cardiac arrhythmias,
• pathological fatigue and malaise that is worse after exertion,
• photophobia
• Poor attentional capacity and working memory 
• poor coordination,
• postural orthostatic tachycardia syndrome, 
• pro-inflammatory alleles
• prolonged sleep including naps,
• recurrent adenopathy (33%),
• recurrent feelings of feverishness with or without low grade fever,
• recurrent low-grade fevers (28%). 
• recurrent rash (47%), 
• recurrent sore throat (54%),
• sensitivity to light, noise, vibration, odor, taste and touch;
• shift towards a Th2 profile
• short-term memory loss
• significant pain can be experienced in muscles, muscle-tendon junctions, joints, abdomen or chest
• sinusitis,
• sleeping most of the day and being awake most of the night,
• slow processing of information 
• sore throat,
• subnormal body temperature,
• susceptibility to viral infections with prolonged recovery periods
• sustained/switching/divided attention reduced
• sweating episodes,
• twitching,
• unrefreshing sleep
• urinary urgency or frequency,
• vivid dreams/nightmares

The COMPASS 31 indicated that 50% have symptoms consistent with orthostatic intolerance. About 43/69 (62%) had Epworth sleepiness scores ≥10, ie, consistent with excessive daytime sleepiness, 26/69 (38%) had significant anxiety and 22/69 (32%) depression measured by HADS A & D. Quality of life is significantly impaired in those with Fukuda criteria CFS (QLS score 64±11) with significant negative relationships between quality of life and fatigue (p<0.0001), anxiety (p=0.0009), depression (p<0.0001) and autonomic symptoms (p=0.04).

Prevalence and characteristics of chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) in Poland: a cross-sectional study. [2019]

Bottom Line

I am still in a “flare” dealing with a rollercoaster of the symptoms above. Most patients when ask for symptoms will give a list of 3-4 only. If you walk these patients thru the above list, the numbers increase — often to several dozens — the symptoms listed are the worst ones and the other ones tend to be ignored. I do not have just one or two of the above, but a pretty good list when waxes and wanes throughout each day.

For myself, when in a flare, I will enumerate the list and then “cherry pick” active symptoms looking at the audience who will be hearing it. Often patients will just list they dominant symptoms, “tiredness, sore throat” etc which will often be interpreted by others as low significance.

For example, instead of the wordy “Postural orthostatic tachycardia syndrome (POTS)” I would simply say tachycardia (verified by a pulse of 170 on my monitoring smart watch). A simple neurological symptoms usually go over better than “slow mental processing”, “mental fatigue”. If someone presses more, I will respond with I have ”
“hypoperfusion in the brain – my brain is not getting enough oxygen” or more technical “hypoperfusion in the brain according to SPECT Brain Scans”. I know of CFS patients that have had transient ischemic attack (TIA), especially after a stressful event.

Of course, the problem is having diminished executive decision abilities — so patients make poor presentation of their symptoms to others 😦