The Hummingbirds' Foundation for M.E.

The Hummingbirds' Foundation for M.E. (HFME) is fighting for the recognition of M.E.,
and for patients to be accorded the same basic human rights as those with similar
disabling and potentially fatal neurological diseases such as M.S.

Articles sorted by author: Dr Bell

An important note:

Before reading this research/advocacy information given in the links below, please be aware of the following facts:

1. Myalgic Encephalomyelitis and ‘Chronic Fatigue Syndrome’ are not synonymous terms. The overwhelming majority of research on ‘CFS’ or ‘CFIDS’ or ‘ME/CFS’ or ‘CFS/ME’ or ‘ICD-CFS’ does not involve M.E. patients and is not relevant in any way to M.E. patients. If the M.E. community were to reject all ‘CFS’ labelled research as ‘only relating to ‘CFS’ patients’ (including research which describes those abnormalities/characteristics unique to M.E. patients), however, this would seem to support the myth that ‘CFS’ is just a ‘watered down’ definition of M.E. and that M.E. and ‘CFS’ are virtually the same thing and share many characteristics.

A very small number of ‘CFS’ studies refer in part to people with M.E. but it may not always be clear which parts refer to M.E. The
A warning on ‘CFS’ and ‘ME/CFS’ research and advocacy paper is recommended reading and includes a checklist to help readers assess the relevance of individual ‘CFS’ studies to M.E. (if any) and explains some of the problems with this heterogeneous and skewed research.

In future, it is essential that M.E. research again be conducted using only M.E. defined patients and using only the term M.E. The bogus, financially-motivated disease category of ‘CFS’ must be abandoned.

2. The research referred to on this website varies considerably in quality. Some is of a high scientific standard and relates wholly to M.E. and uses the correct terminology. Other studies are included which may only have partial or minor possible relevance to M.E., use unscientific terms/concepts such as ‘CFS,’ ‘ME/CFS,’ ‘CFS/ME,’ ‘CFIDS’ or Myalgic ‘Encephalopathy’ and also include a significant amount of misinformation. Before reading this research it is also essential that the reader be aware of the most commonly used ‘CFS’ propaganda, as explained in A warning on ‘CFS’ and ‘ME/CFS’ research and advocacy and in more detail in Putting research and articles on Myalgic Encephalomyelitis into context.


Unfortunately the author featured on this page (Dr Bell) mixes together many of the facts of M.E. and 'CFS' and uses the terminology incorrectly.

It has become very clear that Dr Bell is not discussing a pure neurological M.E. patient group, although some of his very early work does clearly deal primarily with M.E. patients. This website does not support the entirety of Dr Bell's work on 'CFS.' Dr Bell's current 'CFS' work seems to have nothing whatsoever to do with M.E. but instead seems to involve various fatigued patient groups.

Also note that Dr Bell's view that M.E. and Fibromyalgia represent the same illness is an opinion which all of the world's leading M.E. researchers and clinicians would strongly disagree with, there is also an abundance of research to support this view. See  What is M.E.? for more information.

It is important that readers are aware that the HFME not only does not support referring to M.E. as 'CFS' or 'CFIDS' or the mixing of facts relating to M.E. and 'CFS' etc. but is in fact actively involved in campaigning against such problematic concepts, for the benefit of all patient groups involved. 

Articles by Dr Bell

Lyndonville News - Information and Support for the ME/CFS Community. David S. Bell MD, FAAP, Editor
Volume 1, Number 2: September 1, 2004
Topics: Introduction, Notes from the Farm, Rookie Section , Section for the Old-timers,
Case Reports and Literature Review.

[Information about autoimmunity and the autonomic nervous systems]


Lyndonville News - Information and Support for the ME/CFS Community. David S. Bell MD, FAAP, Editor
Volume 1, Number 3: October 4, 2004
Topics: Definitions of an Illness, Introduction, Guest Editorial: Jean Harrison, MAME, History, Literature Review, Clinical Notes, Question and Answer

The symptom of fatigue as experienced in CFS is quite different from the shared common experience of fatigue... The symptoms are at least partially relieved by recumbency.(7)

The symptom of orthostatic intolerance causing limitation of sustained upright activity is the central disabling symptom of CFS. After a period of time in the upright position, a person with CFS becomes overwhelmed with “fatigue,” pain, confusion and other symptoms requiring the patient to lie down. Symptoms such as sore throat, lymph node pain, muscle and joint pain are not in themselves orthostatic, but in my experience, are exacerbated by prolonged standing or sitting. I feel that the cognitive symptoms of CFS are orthostatic in nature, but this has not been tested.


 

Lyndonville News - Information and Support for the ME/CFS Community. David S. Bell MD, FAAP, Editor
Volume 1, Number 4: December 1, 2004
Meeting of the American Association for Chronic Fatigue Syndrome, (AACFS) October 8-10, 2004; Madison, Wisconsin

In recent years there has been, in my opinion, an apathy that has crept in and pervaded some parts of the support community. Perhaps it has been due to ill health, perhaps the patient community is giving up, discouraged by a perceived lack of progress. Maybe it is that the old-timers are just getting older. But whatever the reason, people need to remember that nearly everything good that has come to patients with CFS has come via the support community. This includes the excellent conference in Madison, Wisconsin, sponsored by the Wisconsin support community and the excellent conference summary by Dr. Roz Vallings, who attended the conference thanks to the patient organization in Australia and New Zealand, ANZMES. The guest section of this newsletter is a part of her report, reproduced here with her kind permission. So, support people, don’t give up. Don’t get discouraged. Follow your hopes/dreams/passions, and if this includes activism, get involved.

Definition of Chronic Fatigue Syndrome (CFS) It is inappropriate for physicians to say that there is nothing known about chronic fatigue syndrome, and that maybe it isn’t even real. While many blanks remain to be filled in, including nearly all the blanks on treatment, there are many basics about CFS that are now accepted by most physicians interested in the illness. And the medical literature of nearly 1000 good articles can support the basic premises of CFS


Lyndonville News - Information and Support for the ME/CFS Community. David S. Bell MD, FAAP, Editor

Volume 2, Number 1: January 2005
Topic: Sleep in CFS


Lyndonville News - Information and Support for the ME/CFS Community. David S. Bell MD, FAAP, Editor
Volume 2, Number 2: May 2005
Autoimmune Dysautonomia ?

I am really not much of a political person. I don’t like politics, mainly because I do not like it when people are not honest. And politicians are rarely honest. They can convince themselves that they mean to be honest, but expediency usually wins out. Having said that, I could not be a politician because there are too many hard choices to make. How do you spend $100? On education? On health? On new roads? Give it to starving people in the third world? I could not decide this, so my solution is to avoid politics as much as possible.

But not today. The world of ME/CFS is in chaos in this country. It is getting better in other countries. So I would like to devote some of this issue of the Lyndonville News toward politics and activism. Without voices like yours, ME/CFS will stay an invisible illness.


Lyndonville News - Information and Support for the ME/CFS Community. David S. Bell MD, FAAP, Editor
Volume 2, Number 3: July 2005
Cerebral Atrophy

I do not like to deliver discouraging news. But for many years the medical world has been dismissing CFS/ME because there has been no science to say that this illness is serious. Now that scientific information is pouring in abundantly. Is the medical world going to continue to maintain that ME/CFS is a trivial psychosomatic problem of neurotics and hypochondriacs?

In this issue of the Lyndonville News I would like to summarize several studies, two of which show the presence of cerebral atrophy. In lay terms, that means that the brain has decreased in size, presumably because of death of brain tissue. The other reviews outline a new study proving the cognitive symptoms and some older studies demonstrating decreased blood flow to the brain (cerebral hypoperfusion). In my opinion these issues are connected or linked.


Visit PediatricNetwork.org
to read articles from past issues of the Lyndonville News published between January 1999 and November 2001

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Circulating Blood Volume in Chronic Fatigue Syndrome David H. P. Streeten, MB, DPhil, FRCP, FACP David S. Be11, MD, FAAP

ABSTRACT. Chronic fatigue syndrome (CFS) is an illness associated with severe activity limitation and a characteristic pattern of symptoms despite a relatively normal physical examination and routine laboratory evaluation. The recent description of delayed orthostatic hypotension in patients with CFS, and previous findings of reduced red blood cell (RBC) mass in other patients with orthostatic hypotension not known to have CFS, led us to measure RBC mass and plasma volume in 19 individuals (15 female, four male) with well characterized, severe CFS. RBC mass was found to be significantly reduced (p < 0.001) below the published normal range in the 16 women, being subnormal in 15 (93.8%) of them as well as in two of the four men. Plasma volume was subnormal in 10 (52.6%) patients and total blood volume was below normal in 12 (63.2%). The high prevalence and frequent severity of the low RBC mass suggest that this abnormality might contribute to the symptoms of CFS by reducing the oxygen-carrying power of the blood reaching the brain in many of these patients.

Conclusion: Of the 19 patients reported here, abnormalities in blood volume were very common. The most common, found in 16 of 19 patients, was a reduction in red blood cell mass. Eleven subjects had low plasma volumes, and total circulating blood volume was subnormal in 12 of 19 subjects. In some individuals this abnormality was strikingly severe. Patient #15, for example, had an RBC mass of 12.9 mL/Kg, which is 46% of the expected normal, and a total blood volume of 35.8 mL/Kg, which represents 49.7% of the expected normal value (21). Her peripheral hematocrit was not impressively low at 33.8%, presumably because of the symmetrical reduction in both RBC mass and plasma volume. In other patients the plasma volume was normal or even elevated in the face of a low RBC mass, and in nqne of these patients was the RBC mass abnormality detected by conventional interpretation of the peripheral hematocrit.

All of the subjects in this study had symptoms of orthostatic intolerance which probably contributed to their activity restriction, but tilt table and autonomic nervous system testing was not carried out systematically in these individuals. Normal sitting blood pressures were recorded in all patients under office visit circumstances, except for relatively low values in three and a mildly elevated blood pressure in one. Some of these patients have been tested subsequently and found to have delayed orthostatic hypotension (12), which may be characteristic for CFS (11,12). In general, blood pressure measurements were not predictive of the results of circulating blood volume measurements.


Evaluating Blood Volume Studies - Some Thoughts David S. Bell, MD, FAAP

Published in Lyndonville News, March 2000

I. Blood Volume Data. So far in our office we have measured the circulating blood volume in nearly fifty patients using the Chromium 51 method. It is essential that this method be employed (done in the nuclear medicine department of large University hospitals) as it is the only reliable method of assessing blood volume. There are two components of blood: the red blood cells and the plasma (fluid); everything else doesn't contribute much to the volume. The results are expressed as a function of body weight. Normal red blood cell mass should be between 23 and 28 ml/Kg, and the plasma volume should be between 40 and 52 ml/Kg. The total circulating blood volume is the sum of the two parts, and should lie between 60 and 80 ml/K.

Overall, about eighty percent of our patients with CFS have had either a low red blood cell mass, plasma volume, or both. Some patients have been extremely low, less than 50% of normal blood volume. To put this in perspective, if a healthy person were to bleed 40% of their volume out in a car accident it would likely be fatal. The loss in CFS is presumably gradual. The finding of decreased blood volume in CFS first came from Dr. David Streeten, and I am convinced it is accurate and will serve as a marker for the illness in some regard.

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Exciting book news!

Click here to purchase the first HFME book!


The book 'Caring For The M.E. Patient' by Jodi Bassett includes a Foreword by international M.E. expert Dr Byron Hyde.

He writes:

"There is so much false information that is picked up and disseminated it is near impossible to hold one’s head above the water and sift through this morass of misinformation. Any attempt to seek the truth is always a major difficulty. Somehow, Jodi Bassett and Hummingbird have managed to plow through this field of weeds."

"This is a book that deserves being read, not only by patients and physicians with an interest in M.E. but the bureaucrats in the USA Centers for Disease Control who have done so much damage to the understanding of M.E. I recommend her book to all and wish it every best success."

Paperback $18.95
Hardcover $22.95