The Massachusetts CFIDS/ME & FM Association, a 501(c)3 founded in 1985, exists to meet the needs of patients with CFIDS (Chronic Fatigue and Immune Dysfunction Syndrome, also known as Chronic Fatigue Syndrome), ME (Myalgic Encephalomyelitis) or FM (Fibromyalgia), their families and loved ones. The Massachusetts CFIDS/ME & FM Association works to educate health-care providers and the general public regarding these severely-disabling physical illnesses. We also support patients and their families and advocate for more effective treatment and research.
- Last Updated: 07 November 2015 07 November 2015
by Joan Livingston
(Editor's note, 2008: This article is a report on a lecture by Dr. Bell and was written for the Massachusetts CFIDS/ME & FM Association newsletter The UDATE Winter 1997-1998. The report discusses Dr. Bell's and Dr. Streeten's finding of reduced plasma and red blood cell volume in the blood of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) patients. While Dr. Bell hypothesized at that time that these factors may be a primary cause of ME/CFS, more current research indicates that other physiological systems play a more important role in the causation of ME/CFS. However, many of the findings of Dr. Bell in this article continue to be current in 2008— these findings point to important physiological processes and symptoms found in the illness.)
(Editor's note, 2015: Many patients still have problems as described in this article, and may have improvement if they follow suggested treatments. However, the factors are not an important role in the causation of ME/CFS—more of a result of ME/CFS in many patients, according to current research.)
It may turn out to be more than just a whimsical metaphor. In describing their illness, many Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS) patients say they feel as if their life force has been sucked dry by a vampire. This subjective sensation may in fact be explained by a literal, objective abnormality, according to Dr. David Bell. New, exploratory research by Dr. Bell and his colleagues suggests that a majority of People with CFIDS (PWC) may have "extraordinarily" low circulating blood volume (note: not low blood pressure), and low red blood cell (RBC) mass (similarly, not anemia or other RBC counts routinely measured in basic blood tests).
While circulating blood volume, levels of plasma (the fluid, non-cellular portion of the blood), and RBC mass are rarely tested in the lab work most of us undergo during annual physicals, they are hardly esoteric measures. They can readily be gauged via standard—"not fancy, not controversial"—blood tests that have been in use for decades.
During a recent presentation to members of the Massachusetts CFIDS/ME & FM Association CFIDS, Dr. Bell—a renowned CFIDS/ME clinician and researcher based in Lyndonville, NY—described "striking" blood abnormalities found in the patients he has studied, abnormalities that may go further than other, earlier documented anomalies in providing a strong theoretical basis for the constellation of symptoms, sensations, and disabilities inherent in CFIDS/ME. Not previously presented in the U.S., Bell's latest findings are scheduled for publication in the January Journal of Chronic Fatigue Syndrome, in an article whose lead author is endocrinologist Dr. David Streeten of Syracuse, N.Y.
Piecing together the quilt
The ramifications of Dr. Bell's theory? They could be far-reaching, encompassing a simple-to-obtain, possible diagnostic marker (finally!), a straightforward explanation for the crazy quilt of fluctuating symptoms experienced by patients (ditto!), a definitive end to the debate about whether CFIDS/ME is psychosomatic (ditto!), and—perhaps most meaningful to PWCs—implications for effective treatments to undo the blood abnormalities and hence resolve the panoply of debilitating CFIDS/ME symptoms (ditto, ditto, ditto!).
Until recently, Bell said, "Medical care for CFS has been abysmal. The basic underlying problem has been the lack of physiological markers, which has led to theory after theory about what's generating these symptoms. There's been almost nothing for physicians to work with. If doctors had a single marker like the visual-evoked response in MS, they'd say, 'Yes, I know what this is and what to do about it.' Instead, they've been bewildered by the pattern of CFS symptoms and often don't know how to deal with them."
Dr. Bell further noted that the Centers for Disease Control & Prevention's (CDC) current, symptom-based diagnostic criteria are highly problematic, causing "horrendous problems in disability claims, and patients being hassled by insurance companies, with a type of discrimination I think is really inexcusable;" the criteria also generate difficulty in diagnosing children, who may present with symptoms different from those of adults.
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Notice about names
The Massachusetts CFIDS/ME & FM Association would like to clarify the use of the various acronyms for Chronic Fatigue Syndrome (CFS), Chronic Fatigue & Immune Dysfunction Syndrome (CFIDS) and Myalgic Encephalomyelitis (ME) on this site. When we generate our own articles on the illness, we will refer to it as ME/CFS, the term now generally used in the United States. When we are reporting on someone else’s report, we will use the term they use. The National Institutes of Health (NIH) are currently using ME/CFS. The Centers for Disease Control and Prevention (CDC) are calling the illness CFS.
Until there is consensus on a name for the illness, the Massachusetts CFIDS/ME & FM Association name will not change.