An Altered Self in CFS?

Reproduced with permission by Cort Johnson of the Phoenix Rising – A Guide to CFS website.

Jones, J. 2007. An extended concept of altered self: chronic fatigue and post-infection syndromes. Psychoneuroendocrinology. Feb;33(2):119-29.

This is the first CDC �theory� paper I can remember reading. More designed to provoke discussion and thought than to explain CFS it focuses on a new interpretation of chronic fatigue syndrome (ME/CFS).

Dr. Jones first identifies what he believes chronic fatigue syndrome (ME/CFS) is and is not: is it a disease or an illness? A �disease� (e.g. infectious mononucleosis) is a state of ill health characterized by �overtly abnormal findings�. An �illness� is a state of poor health in which �overtly abnormal findings� are not found; chronic fatigue syndrome, he believes, is an �illness�.

To back up this characterization he notes the many �inconclusive� attempts to tie CFS to a specific pathogen and the over 100 immune studies that, despite the immune alterations found, have often had inconsistent results. He also notes the HPA axis abnormalities and increasing evidence of sympathetic nervous system problems and the potential for these problems to cause immune disruption and autonomic and behavioral problems. Despite these abnormalities he believes chronic fatigue syndrome (ME/CFS) is an illness.

Dr. Jones doesn�t suggest that there are no abnormal findings in chronic fatigue syndrome (ME/CFS); he simply appears to believe they not �overtly abnormal� enough or significant enough to cause an �illness� of this severity.

Laymen�s Speculation – We can now point to many abnormalities in ME/CFS; NK cell dysfunction, low blood volume, low HPA axis dysfunction, brain atrophy, etc., very few of which appeared to have really �wowed� the medical research community. Some appear to be only mildly abnormal (HPA axis functioning) while others may be too new (RNase L fragmentation, pathogen studies) for the research community to know what to do with. Some are just plain inconsistent (cytokine studies, etc.).When taken in total he believes these abnormalities are important but they�re not so much important in and of themselves as what they signify. They indicate to him a failure of the brain to adapt that�s probably centered in the stress response system. This is where the HPA axis and autonomic nervous system and immune abnormalities come from; ME/CFS patient�s brains are not responding well to the everyday demands put on them � they�re basically stuck in a kind of maladaptive state.

The infectious illness process affects our physiology (fever, swollen glands), mental processes (slowed thinking), sensory system (fatigue) and emotions (irritability, a desire to be alone). Researchers speculate that these changes are the brains way of getting us to devote energy to getting well and isolate us in order to thwart the spread of infectious diseases. They have documented changes in the central nervous system (prefrontal cortex and anterior cingulate) that occur during �sickness behavior�. This is powerful evidence that far below our level of consciousness the brain can instill physical, mental and emotional states that it has decided will help us survive. Intriguingly brain imaging studies have documented abnormalities in these same regions in chronic fatigue syndrome (ME/CFS).

An Altered Central Nervous System Self � Given the similarity between �sickness behavior� and ME/CFS its not surprising that the altered self that occurs during infection plays a key role in Dr. Jones theory. Symptomatically ME/CFS patients do look a lot like people with a chronic infection; they�re very fatigued, they�re sleepy, their muscles hurt, they�re a bit irritable, they have trouble thinking, and they often become quite isolated.

But while many cases of chronic fatigue syndrome (ME/CFS) start with an infection Dr. Jones believes a different kind of �altered self� – an �extended altered self� � is present. Why? Because studies have not consistently found the kinds of wildly altered immune processes known to create sickness behavior in infection. ME/CFS studies, for instance, that measure cytokines which are believed to be the chief agents of sickness behavior, have had inconsistent results. Dr. Jones believes something else is at play. That something else relies heavily on a relatively new theory about how the brain works called �interoception�.

The Altered Self in Chronic Fatigue Syndrome. This interoceptive self is a third kind of self; one built by the brain to monitor and respond to the signals of the body. This is the �self� that Dr. Jones believes is dysfunctional in chronic fatigue syndrome (ME/CFS). Dr. Jones theory suggests that at very deep level the brain has become confused or stuck in a maladaptive state. If I�m reading this right Dr. Jones believes the brain still thinks the body has an infection and its sending out message consonant with this idea; it�s telling the body it�s fatigued, that it should slow down, that�s it dangerous to move, etc. It does this by prompting certain thoughts and by altering the physiology of the body. Dr. Jones believes the �sickness behavior� found in chronic fatigue syndrome (ME/CFS) was once driven by an infection but is now being driven by the brain; it has become stuck in sickness mode. This brain driven process is causing many of the endocrine and immune abnormalities seen in ME/CFS.

Something must be causing this aberrant brain behavior and high up on the list of Dr. Jones suspects are immune processes in the brain. He proposes that future research projects examine �immune/inflammatory system products�, and both brain (and body) microglial cells and astrocytes as well as indications that the autonomic nervous system is altered. Microglial cells man the first line of immune defense in the central nervous system. Astrocytes are nerve cells.

Researchers are beginning to figure out why some individuals may be more disposed to enter in �sickness behavior� mode than others. They�ve found, for instance, that a hyperactive stress response and increased levels of several cytokines (IL-6, TNF) appear to predispose cancer patients given the immune factor, Interferon alpha (IFN-a).

Since �sickness behavior� is a �danger-driven� process that activates the stress response many of the problems in ME/CFS could be due to a chronically activated stress response. These presumably include the HPA axis dysfunction, high rates of oxidative stress/inflammation, metabolic syndrome, NK cell dysfunction, autonomic nervous system abnormalities, etc. found in ME/CFS.

Given his belief that ME/CFS constitutes a failure by the brain to adapt it�s not surprising to see Dr. Jones propose that studies which challenge the different systems of the body are best suited to ME/CFS. He proposes that challenge experiments using brain imaging technology should, in particular, examine the areas of the brain involved in interpreting signals from the body and producing a response.

This is an intriguing idea because stress tests (fMRI�s, HPA axis stress tests. etc) have, in fact, generally been more successful at uncovering abnormalities than studies of the body when its at rest.

Treatment. �Dr. Jones targets two parts of the brain; the higher brain areas (prefrontal cortex) where the behavioral responses to the interoceptive picture of the body are generated, and the lower parts of the brain where the unconscious aspects of the interoceptive response (heart rate, breathing, blood chemistry, etc.) are regulated. He proposes that the therapy of choice should depend on which parts of the brain that brain imaging experiments indicate are impaired.

Abnormalities found in higher brain functioning would be meet with behavior therapies designed to challenge the maladaptive thoughts generated by the �wrong� picture of the body. Abnormalities found in lower brain functioning that regulate breathing, heart rate, blood chemistry, etc. would be met with drugs, biofeedback or meditation. The ultimate goal would be to �break the �circle� of chronic sickness behavior� with all the connotations that the medical interpretation of behavior implies. The ultimate goal is to �return (the ME/CFS patient) to a functional self state�.

Editorial. Some chronic fatigue syndrome (ME/CFS) patients have questioned how Dr. Jones, a virologist by training, could be speaking on a field like interoception. The CDC�s original focus on chronic fatigue syndrome (ME/CFS) was on identifying the pathogen causing it and its program was placed in the viral division under the direction of several virologists (Dr. Reeves, Vernon, Jones). These researchers presumably would have loved to find a virus at the heart of this disorder. Rightly or wrongly at least Dr. Reeves and Dr. Jones no longer appear to believe this is true and they are looking elsewhere.

The senior members of CDC�s CFS research team are ending up spending a good deal of their careers on this disease. Like researchers everywhere their reputations will rise and fall on the strength of their ideas. While their conception may be disturbing to some patients they should be examined in the context of a group of researchers who�ve taken a long look at this disease. They may be right or they may wrong but their ideas should never be discarded out of hand.