BACK TO BASICS
The following notes were taken from a lecture by Paul Cheney, M.D., Ph.D. to The Third International Congress of Bioenergetic Medicine in 1999 by PWC/ME Sue Bailey. They are fairly direct quotations but may not entirely accurate as Dr. Cheney was referring to slides during this talk that preceeded a lecture given by him at the same medical conference. We are putting this in, despite it being years old, to show that so many answers have come from the work of the pathology department of the University of Hawaii's John A. Burns School of Medicine.
"CFIDS/ME is very common and extremely disabling. The disability seen is truly impressive. The largest insurance carrier in the U.S. reported huge increases with a 365% rise in men and for women a 557% increase. This is the highest increase of any disease covered by this major insurance carrier. The number of cases continues to rise. There are new cases being produced all the time.
Physical findings are readily seen...you readily find lymphatic tenderness but not lymphatic enlargement...the reason it may be left-sided is the anatomy of the thoractic duct: the left is the main terminal vessel...tender swollen areas can go up and down very rapidly. When you use a reflex hammer, move away from these people as you tap. About 80% are hypereflexive. Balance tests see them fall over. Test the Romberg, tandem stance...
What does it all mean? One category is that something is wrong with the brain. The hypereflexia and other problems are immune activated...with regard to immune activation, there are several kinds of studies that show this. A little study we did on the interluekin receptor is just one measure of activation. The most important conceptual idea in the field is the system's 2-5A synthetase pathway that activates an enzyme called RNaseL. It has a kind of regulatory function for protein synthesis.
In addition to activation of the immune system, evidence of reactivation of viruses is seen from EBV (Epstein-Barr Virus) to CMV (cytomegalo virus) to HHV-6a (human herpes virus 6a) and other viruses are frequent. HHV6 was first discovered in HIV disease (same strain of gs).
There is also evidence of brain problems that are impressive in this disease. This comes in different forms in terms of clinical presentation. They say, 'I've lost my mind, my memory is shot, I can't think very quickly, I'm overwhelmed, I don't know what's wrong with me but I'm not myself.' And it comes in other soft neurologic findings with balance problems and disorders of locomotion and it's really an impressive disease from the brain standpoint.
This a nice study out of Harvard which looked at functional scans of the brain using a SPECT scan...that measured chronic fatigue syndrome with AIDS dementia complex and with depression. They wanted to see if the disorder...was more like depression...what they found, essentially, was that CFIDS and AIDS dementia looked identical by this cut analysis as opposed to depression and normal people...You can examine the brain more carefully using a dual chromatography technique on cerebral spinal fluid...the results suggest that this is severe metabolic disturbance in the brains of these patients.
Perhaps one of the more important publications out of the National Institutes of Health in this disease has to do with the adrenal axis. This particular study was launched initially to prove that this was depression...instead they found that the axis was in fact deranged, but was the opposite of depression...we've extended this study a little bit by looking at corticol reponse to stress...the stressor, in this case, exercise...the cortisol level dropped and dropped and actually reversed in the more significantly ill.
A pathophysiologic summary shows this disease begins as an immune activation initiating alpha interferon...affecting every single enzyme system and every single hormone and every signle structure in the cell. It has a devastating effect.
To look specifically at energy production, since this is a fatiguing illness...there is a significant derangement of the mitochondrial (energy factory of the cell) function...it turns out that the organ system most responsible for how you feel, or whether you feel bad, is our liver...Indeed, if you were to remove the liver, you would probably start seizing from toxic encephalopathy in a matter of minutes... The first people to actually measure that these people were being poisoned by their own bodies...a group co-headed by Dunstan and McGregor. Dunstan's a brilliant biochemist and they would do lipid studies and essentially measure the metabolites coming from the microorganisms in the G.I. tract."
The paragraph above shows that these particular observations by Paul Cheney in this report from 1999 now have many answers that are due to the work from UH's medical school work. The ciguatera toxin was what Drs. Dunstan and McGregor were finding in their lipid studies which are, indeed, being manufactured directly in the liver. We recently found out that this toxin directly affects the mitochondria making it somewhat like having a nearly dead battery in the patient. Althougth this work seems to be commonly misinterpreted around the world, it has been understood by some specialists and appreciated for it's long-awaited answers such as Dr. Cheney.
What these specialists and researchers are looking at is really not "CFS" but M.E. (myalgic encephalomyelitis as has been explained in previous issues of this newsletter. One is a syndrome (CFS) that excludes all neurological symptoms while the other (ME) is a neurological disease. One easy neurological test that any physician can do right in their office is called a Romberg or tandem test mentioned by Dr. Cheney. The test has a patient standing with eyes open with their feet together or one behind the other while maintaining that position. Then they close their eyes. If they sway, they have shown a brain stem dysfunction as explained by UK expert, Professor Malcolm Hooper. At one conference held in Australia in 1995, Dr. Cheney said that more than 90% of his patients have an abnormal Romberg versus 0% of healthy controls (Hooper et al, 2001). Thus far, only the test for the ciguatera epitope has been in higher numbers of patients (over 95%).
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