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Review of Dr. D. Bell’s October 2005 Lecture

MAY 27 2010 by Paul Lycett

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An MEAO, M.E. Association of Ontario, video was played for the new clients, and the regular clients attending the meeting. The video, “An M.E./CFS Medical Information Session” has Dr. David Bell, M.D., FAAP, speaking on October 1st 2005.

The video proves Dr. Bell to be a personable, informed, and supportive doctor who treats M.E. and F.M. patients. Doctor Bell is able to explain these two diseases in layman’s terms. He has also written a book entitled, Chronic Fatigue Syndrome , another book, A Parent’s Guide to Chronic Fatigue Syndrome, as well as a chapter to help teachers work with C.F.S. students. Doctor Bell taught at Harvard for 5 years, and he has been a family practitioner in Lindenville, in the United States and writes on behalf of his M.E. patients.

Doctor Bell says it as he sees it. He admits that educating Pediatricians has been very difficult; however, school nurses have been doing more and more to help children with C.F.S..

He also found that patients who come in with marked disability often complain of neck pain only, not realizing that their widespread body pain, and the resultant inability to think clearly was the actual cause of their disability. Subsequently this inhibited their ability to treat their illness.

The good news for Canadians is that he sees the Canadian Consensus Definition of C.F.S. as being far better than the American definition. Yet he remains sceptical of the new name for M.E., Myalgic Encephalomyelitis, as Chronic Fatigue Syndrome; he insists that there is no fatigue in C.F.S., because fatigue is something that you can recover from, while C.F.S. patients have no real recovery state. The C.F.S. patient has no recovery, yet the medical community remains inarticulate in its terminology. Instead the patient has exhaustion or weakness; this is not simple tiredness or fatigue.

Doctor Bell also explains the pre-syncope point of orthostatic intolerance, when a patient feels light headed and not able to focus while standing. Normal healthy people can stand for up to 12 hours a day but not the C.F.S. patient. He hypothesizes that this is due to the reduced blood flow in nearly all C.F.S. patients. He sees this as being caused by the illness which created the immune response and allowed the disease to begin working within the body. The resulting vascular changes negatively affect the blood supply to the muscles affecting the circulatory system, the cerebral system, which negatively affects the neurological system, and the gut, which results in irritable bowel syndrome.

This C.F.S. illness is thought to be triggered due to a genetic pre-disposition for the illness, and clinicians report that the disease does run in families. One genetic study on Gulf War Syndrome patients revealed that 75% of the C.F.S. patients got the disease because of acute infection. What often began as run of the mill flu became something more. It was found that emotional or physical stress could also be the trigger for a virus to attack. A healthy body responds to the virus by putting out cytokines, and the throat feels sore, and then the body eradicates the viral infection after about 5 days and the cytokine response shuts down. This does not happen in the C.F.S. patient, their cytokine response does not shut down, and the flu symptoms continue.

Many viral infections have been found to trigger the C.F.S. from the Herpes virus, to EVB, HHV6, the Entro virus, Parbo virus, Hepatitis C, Ross River Virus, and the still controversial Lyme Disease. The Australian “Dubbo Infectious Outcome Studies” found that the DNA of the following viruses were present in C.F.S. patients: the Epstein Barr virus, the Mononucleosis virus, RNA virus, Ross River virus, as well as the Q fever virus. Their study revealed that 10% of the patients who had one of these viruses got C.F.S., and the most important predictor of C.F.S. was the severity of the initial viral infection.

Doctor Bell insists that these viral studies prove without doubt that C.F.S. has nothing to do with the emotions, or psychiatric illness. That is the good news.

15% of the patients who had the Parbo virus in the Kerr study developed C.F.S., while 60 % developed F.M.. This reveals the link between C.F.S. and F.M.. Once the acute viral infection stimulates the immune system the result is abnormal cerebral circulation, and this reduction in blood flow spreads throughout the brain, almost like a seizure. The resulting nausea and exhaustion means that the C.F.S. patient cannot think straight.

Head trauma was also found to be the cause of C.F.S. in about 5% of the patients. Yet the immune response was the same and the natural killer cell numbers in the C.F.S. patient were found to be abnormal. A healthy person may have 80 k cells in the blood RNA, and this would shut down the disease system and no more interferon would be produced; however, this is not the case for the C.F.S. patient. The C.F.S. patient has 37 K cells, and the fragment becomes biologically inactive causing the cytokine response to cascade instead of shutting down, and thus the viral symptoms continue. The C.F.S. symptoms of fatigue, malaise, exhaustion, diarrhea, and irritable bowel continue.

He reports on a paper by Dr. Charles Raison, a liver specialist who looked at Hepatitis C patients treated with interferon, 22% of whom developed C.F.S.. He found that of the 70% of those who developed C.F.S. only 30 % met the C.D.C. criterion for C.F.S., and he asserted that the virus did not cause the C.F.S., but rather the use of the Interferon caused the C.F.S. symptoms. Thus he asserted that the interferon in the body is the most important cause of the symptoms of our illness. It is the virus therefore that causes the abnormal immune response, and the C.F.S. causes the vasculoscopy, or abnormal blood flow. He insists that this cascade of symptoms need to be treated at the beginning of the illness. The stage 3 illness expression reveals the patient suffering from lack of alertness, tiredness, abnormal autonomic nervous system responses in the brain, blood flow etc.. Spect scans show the M.E. patient’s abnormal decreased blood flow. While this is not a good diagnostic marker it remains a marker.

Doctor Bell’s report on the Japanese research was intriguing. He reports that the Japanese measured oxygenated blood, or haemoglobin, and found that there was indeed less oxygen in the patients who had orthostatic, or standing problems.

Doctor Bell was adamant when he asserted that anti-depressants would not help oxygen levels in the blood. However he did find that if a patient developed depression because of the severe changes in lifestyle then he would not hesitate to prescribe anti-depressants.

He ended his presentation by repeating that the C.F.S. patient’s orthostatic, or standing intolerance was caused by blood vessels not reacting properly due to a viral attack, which results in reduced blood volume, reduced veinous return to the head, and a reduced cardiac output. A healthy body has been found to have 5 quarts of blood, while a C.F.S. body has 4 quarts, and standing becomes a challenge because there is less blood in the legs, and with less blood there is less blood to work with in the heart, lungs, and kidney, since the body makes the blood supply to the brain its number one priority. Pressure trousers on the legs may help you stand propped up in one place, but otherwise they were found to be totally impractical for daily use as an assistive device. Yes speech became less slurred with the trousers but the patient had no mobility. The improved speech while wearing these trousers just proves that improved blood flow to the brain did improve brain function. The reduced cardiac output means that there is reduced cardiac output when standing, reducing blood flow to the brain when the blood vessels are already reducing blood flow level, as well as reduced venus return. Obviously this explains why C.F.S. patients are unable to stand for a long time. Healthy people can stand for one hour, while C.F.S. patients often have to lay down until their orthostatic pressure returns to normal. This reduced blood flow makes walking to the bathroom a challenge, some faint, some have slurred speech.

Some C.F.S. patients have such severe postural tachycardia that they can stand for l5 minutes or much less. Yet he reports that you will find C.F.S. patients attempting to stand simply because they have become so used to withstanding pain an discomfort , that they will lie down for 10 minutes to restore their blood pressure and then continue their task. These patients are often unable to tolerate alcohol since it dilates blood vessels.

The reality remains that as what happens in our bodies becomes more understood in the medical community drug therapies become less relevant. Doctor Bell asserts that treatment protocol remains the same. You need to get comprehensive regular care from your General Practitioner, so that your thyroid can be checked yearly etc., and you can be screened for illnesses such as cancer, because other illnesses are still a threat due to your compromised immune system. Other than that you need to accept the fact that you must learn to cope with your illness by carefully coping with daily requirements and at the same time avoiding stressing your body to the extent that your illness flares up and renders you immobile once again. Getting sleep is essential, and sleep medication may be necessary.

Doctor Bell smiled as he asserted that C.F.S. patients are motivated to be active, but they must pace and avoid over exertion when having a good day, because the increased disease load when you crash makes recovery of any kind more and more difficult. Once you learn to pace you will begin to feel better, and you will begin to feel better only if you teach yourself to rest before you get tired. Post syncapal fatigue caused by reduced blood flow to the brain, is sure to happen if you don’t rest.

Doctor Bell’s statement about recovery seems contradictory but it is not . He asserts that the prognosis for full recovery is 2% to 70%. If the reference point is recovery and return to work then the percentage is 2%. Yet if the reference point is the patient’s most debilitating level to a somewhat improved level , then the recovery rate is 70%.

He reminds us to be kind to our doctors, and to ask him or her to treat one symptom at a time. Begin by getting help sleeping because your body requires sleep. Treat your pain next, and learn to pace carefully to try to avoid orthostatic, or standing, intolerance and the accompanying cognitive dysfunction.