CFIDS New Mechanism Found, Treatment Tried!
NMH (neurally mediated hypotension)
Volume 1 Number 2 Fall 1997
- The National CFIDS Foundation, Inc.
- 103 Aletha Road
- Needham, MA 02192
- [fax: 781/449-8606, 781/925-3393]
Part of The National CFIDS Foundation, Inc. disclaimer: "The national Forum Is published quarterly by the National CFIDS Foundation, Inc. The contents are ©[copyright symbol] 1997 by the National CFIDS Foundation, Inc©. Articles may be reproduced by other not-for-profit publications as long as copyright notices are included and items are clearly attributed to the national Forum."
New Mechanism Found, Treatment Tried!
NMH (neurally mediated hypotension)
A large piece of the puzzle has been discovered about the elusive and complex illness called CFIDS/FMS. It evolved in a strange but fortuitous way.
David Bell, M.D., the renowned CFIDS expert, hod a young child in his practice who was severely ill and getting worse. He found he was missing an important hormone in his body. Desperate to help the child, Dr. Bell contacted Dr. Peter Rowe, the John Hopkins expert who discovered NMH (neurally mediated hypotension) in a sub-set of PWCs (persons with CFIDS). Dr. Rowe hadnt progressed into the area needed by Dr. Bell and suggested that he contact Dr. Ronald Schoendorf of Montreal, a physician who also has been working on NMH, but uses mitodrine and pressure pants to help this condition instead of fourinef. Dr. Schoendorf suggested that Dr. Bell contact Dr. H.P. Streeten. Dr. Bell had never heard of him nor had Dr. Streeten heard of Dr. Bell Dr. Bell wrote to Dr. Streeten and a small miracle began to unfold.
David H. P Streeten, M.B., B.CH., D.Phi., FR.C.P, F.A.A.P, is a soft-spoken, brilliant Englishman who was a Professor of Medicine and Chief of the Endocrine Section of New York Health Science Center in Syracuse. He had retired a few years ago after publishing many medical articles as well as a book on his specialty for medical professionals. He knew nothing about the illness that Dr. Bell contacted him about except that it was called "The Yuppie FIu," yet he had been treating patients with the exact same symptoms before his retirement, and he had cured some of them The patients were referred to him with a diverse array of complaints. Dr. Streeten discovered what was going wrong in their bodies (the mechanism) and set about trying to reverse it. He called these problems "orthostatic disorders of the circulation" and even had published a book by the some title (1987, Plenum Publishing Corporation, NY) which told of the mechanism, manifestations, and treatments he had used. The text is now out of print, but can be ordered from the publisher. Without knowing it, Dr. Streeten had published a book about the mechanism of CFIDS!
To put it very simply, Dr. Streeten found that there were two groups of patients (actually PWCs). The first group hod an abnormally low volume of red blood cells circulating in the body. They seemed to be milder cases. The second group had this some problem along with an abnormally low plasma volume. (see illustration)
When Dr. Streeten corrected the problem, the patient returned to good health. He assumed that this dysregulation was due to a bruin in jury. What caused this brain injury was not in his field, but he also assumed that the patients hod a genetic predisposition about which Dr. Robert Suhodolnik has recently published. (See Medical Journal Summaries in this issue.)
In other words, having too little blood circulating in the body is like someone having a stroke. In many ways, PWCs hove been feeling the same effects as if they were living in shock Dr. Bell convinced Dr. Streeten that "CFS" was, indeed, a very serious illness that appeared to be what the retired doctor had been having success with before his retirement. When told of the multitudes who suffered from this illness world-wide, Dr. Streeten agreed to come out of retirement to test some of Dr. Bells patients to see if, indeed, the same mechanism was responsible. Seventeen severely ill patients began a clinical trial. The trial foiled to help the patients but future trials may prove this to be a nearly total therapy for less acute PWCs. Every PWC in the trial had an abnormal test result! Will this be the answer for all PWCs? It doesnt appear to be right now, but it definitely helps a small percentage who fall into the first category and may, in the future, be a help to every PWC. Theres still much more research to be done in this area, but discovering this mechanism is a huge leap for CFIDS research. Seventeen is not a large number, but Dr. Bell has had more patients tested for this abnormality since then and found all of them to be positive. Encouraged, he then asked Dr. Charles Lapp and Dr. Nancy Klimas to test some of their patients to find if the low volume was a part of every PWCs problem. The results are not available yet, but a paper has been submitted for publication. Dr. Streeten first submitted a paper to the New England Journal of Medicine, but it was returned to him with a cryptic note saying they did not publish in this area. The NEJM has never published on CFIDS! It is one of the most highly respected medical journals in the world. The refusal speaks volumes of their own belief in CFIDS! Dr. Sheeten then submitted the paper to The Journal of the American Medical Association (JAMA), another highly regarded journal where he is a reviewer for the staff. In fact, he had reviewed the Johns Hopkins paper and vigorously supported its publication, saying it was "brilliant"! They, too, turned it down! Dr. Streeten was astonished He hod never been rejected for publication and had had dozens of papers published during his esteemed career But he hod never tried to publish a paper on CFIDS before. The bias against this illness had hit him!
Wanting to publish quickly so that other researchers could use this knowledge to build upon it, Dr. Streeten turned to the small but growing Journal of Chronic Fatigue Syndrome (JCFS). The article will be published in the January issue. [Editors Note: Call 1800-3-HAWORTH to subscribe.] The 90s are OUR decade and big things are happening with this illness that most still refuse to take seriously. In spite of the government calling cognitive behavioral therapy the only way to treat CFIDS, dedicated researchers have not given up and continue to unravel the mysteries of this illness.
Will this some mechanism be found in Gulf War Illness or Multiple Chemical Sensitivity? Only time will tell. However, at least one participant of the trial, and a non-responder thus far, found that her hypersensitivities were gone after just weeks on one of the medications. This patient was able to tolerate foods that she was unable to eat for over 7 years and smells of chemicals did not bother her. Although her success did not last, we now know that these problems con be reversed She also experienced huge cognitive improvement during this time. Were very hopeful that this information will lead to better treatment and, perhaps, even a cure for many! Well keep you updated on the progress.
TESTING FOR A CIRCULATORY PROBLEM
Just recently, medical students have been advised to take blood pressure readings and heart rate tests while the patient is in an upright position. Orthostatic hypotension was described as early as 1925, but Dr. David Streeten published the first book for medical professionals that was devoted to problems that the body had trying to adjust to different postures.
While it is known that changes in the bodys posture from lying down to sitting and standing involve neurological, endocrine, and cardiovascular adjustments to maintain normal circulation in the body, there are several orthostatic disorders that hove gotten little attention because they are not felt to be life threatening. Using grants from the U.S. Public Health Service, Dr. Streeten described many of these resulting problems in previous publications. He had no idea, however, that while he was writing his book, an entity inappropriately named Chronic Epstein-Barr Virus by The National Institutes of Health was actually the same mechanism he had been studying. To detect the low volume, Dr. Streeten ran several tests. Only the final blood volume test, done correctly and using the right radioactive isotope, will be needed to prove this in all PWCs. A clinical trial, however, needs more data for proof.
First the patient was in a reclining position with an automatic blood pressure mechanism attached to their arm. Every two minutes, the pressure would automatically print out results. The patient was then asked to sit and stand. As in the tilt-table test, this Emeritus Professor of Medicine was looking for a plunge in blood pressure, but was also taking careful notes on all reactions by the patient. Why not use a tilt table test for this? "People dont tilt!" exclaimed Dr. Streeten, "They sit, they lie down, they stand, but they dont tilt." Further testing is done with a MAST suit which is also called "shock pants This is like a giant blood pressure cuff that envelopes the lower body and looks like a huge pair of rubber pants. The blood in the body, instead of going to the heart when a person stands, pools in the extremities, especially the legs. When this "suit" is inflated, most patients feel enormous relief from the pain they were experiencing when they hod to stand in one place without shifting their feet or weight. A physical examination follows this test.
The final phase of testing in this clinical trial involved a blood volume test. Three total volumes are sought: red blood cell (RBC) volume, plasma volume, and total volume. This is the only test necessary for most PWCs to prove that low circulating volume is the problem. A radioactive dye using chromium 1 is injected. It is about the same amount of radiation one would get if having a lung x-ray. The blood is then drawn at intervals to read the volumes. (See diagram on p. 6)
Treatment for the volume reduction depends on the outcome of the tests. Some patients hove found florinef effective while others have found mitodrine works best for them. Both enhance volume . Florinef is a corticosteroid while mitodrine is an alpha adrenergic agonist that was approved by the FDA (Federal Food and Drug Administration) in 1996, although it was used in other countries for many years.
Unfortunately, a mechanism for totally reversing this abnormality has not yet been found, although one is being tried now in a clinical trial. More information will be included in the January issue of The Journal of Chronic Fatigue Syndrome. There is still another piece of the puzzle that still is elusive. However, low circulating blood volume disorders can account for the many diverse symptoms seen in CFIDS/ FMS including menstrual problems, intracranial symptoms, cardiovascular problems, fluid accumulation, fatigue, musculoskeletal pain, severe thirst, glucose intolerance, tachycardia, etc. At least two symptoms were new to Dr. Streeten: hypereflexia and thermal control. It is possible that the patients he treated earlier were not as severe because they were not sick as long.
PWCs with severe hypertension cannot be treated by the methods now being tested, although borderline hypertension could be "predominantly or exclusively orthostotic," according to Dr. Streeten. Nearly all the symptoms of CFIDS can be attributed to reduced cerebral blood flow caused by the lowered volume and the inadequate autoregulation in the brain. Dull chest pain, mitral valve prolapse, even impotence and incontinence can be attributed to this disorder. Other common symptoms are syncope (faintness), dull chest pain, flushing, excessive sweating, nausea, and impaired cognition are explainable. Indeed, even the exercise debate that is raging throughout the CFIDS community con be answered by this enormous step forward: walking will help mild patients, but NOT severe patients. In 1941, Stead and Ebert wrote that strenuous activity aggravates the symptoms to a great degree! In 1925, Bradbury and Eggleston noted that seizures con occur with orthostatsis, although they are NOT grand mal! There are even orthostatic disorders that explain the weight gain seen in CFIDS. Although this mechanism needs much more study, merely discovering it brings us closer to a day when treatment will be possible. Indeed, if nothing else is gained, the clinical trial proved that no damage is permanent with this illness. When the right treatment is found, CFIDS con be totally reversible!
NCchemNet Home Page