David S. Bell, M.D. (one of the nation’s most recognized experts in CFS) –

“The Doctor’s Guide to Chronic Fatigue Syndrome

o         “CFIDS is a remarkably complex illness with myriad symptoms that partially resemble many other diseases.  But the process of sorting through the symptoms and carefully looking for abnormalities on physical examination is no different from that of other illnesses.  Like other illnesses, the symptoms of CFIDS form a specific pattern that, combined with the characteristic physical examination, is diagnostic.”

o         “One defining aspect of CFIDS is that with rest, many people feel relatively well, but symptoms flare up with exertion or activity.  Some people with CFIDS will have three or four hours a day when they feel relatively well, most commonly in the afternoon, the ‘activity window.’  It is during this time that they can shop or do activities outside the house with less difficulty.  The disability in CFIDS is not the same as in cancer or multiple sclerosis where performance level is constant during the day and constant from day to day.  Any good measure of the disability status in this illness needs to take these variables into account.”

Renee Taylor, Ph.D., one of the nation’s leading scientific researchers of Chronic Fatigue Syndrome –

“A Clinician’s Guide to Controversial Illnesses: Chronic Fatigue Syndrome, Fibromyalgia, Multiple Chemical Sensitivities”.

o         “Professionals working on behalf of individuals with CFS, FMS, and MCS should be aware of a number of shared challenges facing individuals with these conditions…[including] High variability of symptoms and impairments.  These illnesses exhibit enormous fluctuations in symptom severity and level of impairment between and within individuals.”

o         “The enormous variation in symptom severity that can allow patients to be relatively functional for brief intervals yet severely impaired is very difficult for others to comprehend.  Rather than viewing these fluctuations as a manifestation of a highly unpredictable and poorly understood condition, observers are more likely to believe that disability and functionality are voluntary choices made by the patient.”

Professor Anthony J. Pinching (Professor of Immunology and Head of the Chronic Fatigue Services Clinic at St. Bartholomew’s Hospital in London).

Guide to the Management of Chronic Fatigue Syndrome(ImmuneSupport.com)

o         “One of the characteristic features of CFS/MDE is the delayed way in which setbacks can occur after attempting too high a level of activity…. It becomes important to know from experience what activities are manageable without setbacks so as to determine a current baseline of sustainable activity.  It is important to take account not only of physical activity, but also of mental and emotional activity – the latter are often the most consuming of energy for people with CFS/ME.  At all stages it is important to have a balance between different types of activity, especially between “have to do” and “want to do” things.” 

General Characteristics of Dysautonomia

National Dysautonomia Research Foundation (NDRF) website:  

o         “Our bodies have a complex task of maintaining a stable internal environment and respond appropriately to changes that take place in the external surroundings. This complex task is directed by the Autonomic Nervous System.”

 o         “The autonomic nervous system manages most of our bodily systems, including the cardiovascular system, gastrointestinal, urinary and bowel functions, temperature regulation, reproduction and our metabolic and endocrine systems. Additionally, this system is responsible for our reaction to stress - the flight or fight response.”  

Dr. David H.P. Streeten (formally Professor of Medicine and Chief of the Endocrine Section of New York Health Science Center):  

o         While we are not constantly aware of the activity of the autonomic nervous system as we are of unusual sensory and motor events, the normal functioning of the autonomic nervous system day and night, from heart-beat to heart-beat, plays a largely unconscious but vital role in our livelihood. It is not surprising, therefore, that autonomic abnormalities, though they are usually more difficult to recognize than a severe pain, a sensory loss or paralysis of a limb, may be even more important in impairing the quality and even jeopardizing the continuation of life.  

The American Dysautonomia Institute website:  

o         The ANS is the part of the nervous system that controls all automatic bodily functions.  Due to this disorder, the human body fails to properly regulate blood pressure, heart rate, temperature control, vascular constriction/dilation, and blood supply to the brain. The results are often unpredictable fainting, extremely low blood pressure, light-headedness, dizziness, problems concentrating (brain fog), headaches, fatigue, heart palpitations, exercise intolerance, insomnia, hot flashes, chills, weakness, seizures, pain, and disability.”  

Dr. David Bell – in his article Circulating Blood Volume: 

o         If there is not enough blood in the system, circulation to certain organs, particularly the brain, could be impaired. If a normal person loses 40% of their blood volume in a car accident it is usually fatal. In CFS the loss is obviously not all at once, so it is not fatal. But it can cause problems in getting adequate oxygen to the brain, particularly if one is standing up. 

o          “A subnormal RBC mass and/or decreased circulating blood volume may well result in diminished cerebral blood flow with subnormal oxygen-carrying capacity.”  

Activity Levels

Dr. Lucinda Bateman, MD, Fatigue Consultation Clinic of Salt Lake City
Member CFIDS Association of America
The CFIDS Chronicle, Spring 2008

"activity limitation can cause diminished strength of both the skeletal muscles and heart muscle.  Without enough use, these muscles actually atrophy, getting smaller and weaker as time goes on.  This global decline in strength and stamina is called physical deconditioning, and unfortunately it's often accompanied by weight gain as well.  Being deconditioned can worsen pain, fatigue, balance/stability, orthostatic intolerance and sleep, not to mention self esteem.  A thorny problem, deconditioning is not easily repaired because initial attempts to exercise invariably result in a flare-up or relapse in CFS symptoms."

The Centers for Disease Control (CDC) website:

o         “important not to avoid activity and exercise altogether. Such avoidance leads to serious deconditioning and can actually worsen other symptoms.”

o         “CFS patients must learn to pace activities” and that “The goal is to balance rest and activity to avoid both deconditioning from lack of activity and flare-ups of illness due to overexertion.”

Sachi Thanawala and Dr. Renee R. Taylor – research published in the May, 2007 Journal of Chronic Fatigue Syndrome: 

o         “Research has been conducted to study the influence of coping on the physical, social, and psychological well being of people with CFS. Strategies such as avoidance/escape, denial, mental and behavioral disengagement, information seeking, and accommodating to illness have been reported to be associated either with greater levels of fatigue, impairment, or other psychosocial issues in CFS.  In contrast, maintaining activity, positive reappraisal, and seeking social support were associated with lower levels of impairment and greater psychological well being.”(References omitted)

Drs. Dennis Turk and Beatrice Ellis – In their article “Pain and Fatigue” in the Handbook of Chronic Fatigue Syndrome (Jason, Fennell, Taylor):

o         A common feature of both CFS and FMS is physical deconditioning.  Thus, exercise to improve endurance and flexibility is appropriate for both pain and fatigue.  There may be both direct and indirect benefits of exercise.  Direct benefits might include increased production of endorphins with a concomitant reduction in pain.  There may also be indirect benefits from an increased perception of control that counteracts the sense of helplessness commonly observed in patients and thereby restores their morale.

Dittner and Chandler – In their article “Measuring Symptoms and Fatigue Severity” in the Handbook of Chronic Fatigue Syndrome (Jason, Fennell, Taylor):

o         Physiological, immunological, neuroendocrine, and sleep and mood changes can all result from inactivity.  In fact, physical changes can be seen in normal volunteers after only a week of inactivity.  There is also evidence that mental inactivity can lead to symptoms such as the metal deficits seen in CFS.  Other consequences of inactivity include reduced visual acuity and heat and cold intolerance.  Again, inactivity is itself a consequence of many illnesses, but its role in perpetuating the condition should also be considered. (References omitted).

While addressing inactivity as a potential cause for some CFS symptoms, this statement primarily points out that inactivity, both physical and mental, can make CFS symptoms worse. 

Dr. Renee Taylor – Spring 2004 issue of the CFIDS Chronicle

o         “Because CFIDS is a chronic condition, it puts stress on everyone involved, not just the patient. The most common form of anger I see is the anger that emerges from disappointment and losses associated with interpersonal relationships.”  She goes on to note “anger turned inward is one of the most undesirable and dangerous forms of anger because it is so closely tied to self-worth and identity. When I see a patient who is demoralized, anxious, sad, apathetic or hopeless about recovery, I usually find that the patient is experiencing a great deal of internalized anger.”