Report From the 7th Annual AACFS Conference
In Madison, Wisconsin Oct 8-10th, 2004
'Byron Hyde's Talk'
by Rich Van Konyenburg
This is my review of the third talk presented at the pre-AACFS conference
session on Effective Therapies for Chronic Fatigue Syndrome (CFS) and
Fibromyalgia (FM), sponsored by the Wisconsin CFS Association. VHS video tapes
and DVDs of these talks are offered by this group at their website,
http://www.wicfs-me-org.
Biographical Information on Dr. Byron Hyde, M.D. (taken from his website,
http://www.nightingale.ca)
Dr. Byron M. Hyde attended the Haileybury School of Mines and worked as a
geophysicist. He then did premedicine in the Faculty of
Medicine and University College, University of Toronto, obtaining a degree in
chemistry and nutrition. He graduated in medicine from the
University of Ottawa, where he was the Director and Chief of the International
Exchange Program for the Canadian Association of Medical Students and Interns (CAMSI).
Dr. Hyde founded the International Summer School in Tropical Medicine. He
interned at Hotel Dieu in Montreal, was a resident at St. Justine Hospital in
Montreal and at the Ottawa Civic Hospital. He also studied in Munich at the
University Kinderklinik and in Paris at the Necker Hospital for Children.
He was a research chemist at the Roscoe B. Jackson Laboratory at Bar Harbour,
Maine, a leading world laboratory in immunological research. Following this, he
was Chief Technician in charge of the Electron Microscope Laboratory in Toronto
at the Hospital for Sick
Children, followed by a similar post at the University of British Columbia.
Dr. Hyde has authored a book on electron microscopy and two non- medical books.
Dr. Hyde has been a physician for 25 years and has
performed charitable work as a physician in Laos and the Caribbean. He held the
position of Chairman of the Ottawa Community Health
Services Association, and is presently Chairman of The Nightingale Research
Foundation.
In 1984, Dr. Hyde began full-time study of the disease process then known as
Myalgic Encephalomyelitis (ME)(renamed in 1986 by Dr. Gary
Holmes in the USA as Chronic Fatigue Syndrome). He has worked exclusively with
ME/CFS patients since 1985. In 1988, Dr. Hyde organized an association and
founded The Nightingale Research Foundation, dedicated to the study of Myalgic
Encephalomyelitis / Chronic Fatigue Syndrome. He also acted as Chairman of the
1990 Cambridge Easter Symposium, and of the Workshop on Canadian Research
Directions for Myalgic Encephalomyelitis / Chronic Fatigue Syndrome in May,
1991, at the University of British Columbia.
How Dr. Hyde Became Involved in ME/CFS Work
In his talk, Dr. Hyde described the circumstances that caused him to become
interested in studying ME/CFS. A friend invited him to come to a party in
Montreal, which he did. About ten other physicians, two social workers, nurses,
wives and girlfriends also came. Three
days after the party, about half the people who had come fell ill with a severe
brain dysfunction and seizure syndrome. It was
obvious to him that this was an infectious disease because of the circumstances.
Somewhat later, his daughter, who was then eight years old, also fell ill, with
considerable pain. She recovered after three months,
and has not had any relapses since,though she has worked in Baghdad and, as he
put it, some fairly "nasty" places in the world.
Studying the Epidemics, and Studying Non-epidemic Patients in Canada
In response to these events, Dr. Hyde traveled to all the places where there had
been ME/CFS illness epidemics reported, including
Los Angeles (where a 1934 epidemic occurred at Los Angeles County General
Hospital), Australia, New Zealand, England, Scotland,
Switzerland, Denmark and Iceland (1946-47 epidemic). In most cases he was able
to find and speak to physicians who had been involved in
dealing with these epidemics. In Iceland he examined over 50 patients who were
still ill almost 40 years later, including the mayor of Reykjavik. Some were
working, some were not, but all were still disabled.
Generally speaking, Dr. Hyde found that the epidemics occurred in hospitals,
schools or military barracks. In the case of students, all were on sports teams,
such as the girls' basketball team near Lake Tahoe. In North Carolina, there was
a symphony orchestra that had an epidemic in 1984. In the cases involving
hospitals, an infection either went through the community, bringing a lot of
sick people into the hospital, and then the hospital staff became ill also, or
as in the case of the Mercy Hospital in California in the 1980s, people in the
hospital fell ill first, and then it spread to the community from there.
He said that there have been over 50 epidemics, and in 90% of these cases an
incubation period of three to five or six days has been
observed, making it clear that an infectious disease was involved. In 1992, he
studied 2,000 patients in Canada who had become ill with
ME/CFS sporadically (in other words, not as part of epidemic outbreaks) between
1984 and 1992, and he found that the group most injured, in terms of the highest
fraction of their total population, were respiratory technologists. These people
worked with patients who had longstanding lung infections, of months to years
duration. He concluded that this suggests that a chronic viral infection must
have been involved.
The highest absolute numbers of people who became ill in terms of occupation
were among primary school teachers, followed by other teachers, and then
hospital workers in general who had contact with patients. Among the teachers
and healthcare workers, the top group
as a proportion of their total population were those who worked with physically
or mentally challenged people, such as deaf, blind, or
psychiatric patients. Dr. Hyde suggested that these people might have had more
stressful jobs, but also that the state of cleanliness is usually not as high in
these situations, again suggesting infectious disease.
Dr. Hyde's Current Clinical Approach
Dr. Hyde currently sees only 35 patients per year, but he examines, tests, and
studies each patient very thoroughly. He refers to his
testing protocol as a "total body assessment." He said that his experience as a
geophysicist contributed to his development of this approach. In geophysical
exploration for ore bodies that can be profitably mined, a number of different
techniques are used to measure various characteristics of the subsurface and to
plot them on maps. When anomalies in the different measured parameters intersect
on the maps, these intersections suggest the location of ore bodies. In the same
way, he has found that much can be learned about the human body by conducting
many different kinds of tests and combining the results in an overall analysis.
The total testing program that he orders for each patient costs about $5,000
(Canadian) and takes about six months. He justifies
this cost on the basis that it is a small figure in comparison to the income
loss of an individual who remains ill for many years, and
in comparison to the consequent tax loss to the government. The tests fall into
the following categories: brain and vascular survey, sleep study, dental and
mandibular survey, vertebral survey, cardiac survey, chest and pulmonary survey,
abdomen and pelvic tests, thyroid and endocrine survey, arthritic and autoimmune
survey, blood tests, general tests (including mammogram and pap smear), metals
and toxin tests, infectious disease survey, and psychiatric assessment. In
addition, he asks patients to report their medications, surgeries, allergies and
sensitivities, and a complete personal and family medical history, and he
performs a physical examination.
One of the main techniques that he relies upon is high-resolution SPECT scanning
of the brain. SPECT stands for "single photon
emission computed tomography." In this technique, the patient is injected
intravenously with a substance that incorporates a
radioactive gamma ray emitter. After a short period of time to allow the
substance to bed distributed within the brain, emitted
gamma rays are tallied by a special detector system (gamma camera) coupled to a
computer. This system pinpoints the locations of the
gamma ray emitters and is able to produce a three-dimensional image of the brain
that reflects how well blood flows throughout the brain
and how metabolic activity is distributed within the brain.
The use of SPECT in ME/CFS was pioneered in 1990 by Dr. Jay Goldstein and Dr.
Ismael Mena, who found certain abnormalities. Others have reported later SPECT
studies with varying results. Dr. Hyde suggested that the reason for these
different results may be that the various groups of patients who were studied
did not all have ME. He emphasized the complexity of diagnosis and the need for
a total body assessment. He also emphasized the importance of using a machine
with high spatial resolution.
His patients are scanned with a dedicated-head Picker 3000 gamma camera system,
which he noted is no longer manufactured, but that
used units are still available on the market. He has scanned over 500 ME
patients with this machine, which achieves a spatial resolution of 1 to 1.5
centimeters. This will not resolve the pituitary gland because it is too small,
but it will resolve the thalamus and hypothalamus.
Comments on the Development of the Case Definitions
Dr. Hyde emphasized that his findings about ME/CFS patients have been very
different from the case definitions that were promulgated
by the U.S. National Institutes of Health (NIH) and the Centers for Disease
Control (CDC. [Rich--I might mention here that Dr. Hyde is
on record several times as having been a persistent and severe critic of these
case definitions from their beginnings.]
He said that in his view, these definitions have totally failed us. His view of
one of the reasons these definitions are so far off the
mark is as follows: In the United States, there are many poor people without
adequate health insurance. Up until a few years ago, these people could go to
any of the CDC clinics that formerly existed, "whether they were alcoholics or
psychiatric patients or whatever, and they could say that they were chronically
tired or had muscle pain, and this may or may not have been true." Dr. Hyde
believes that these indigent patients had an effect on the attitudes of the CDC
researchers, because the latter concluded that "there was really nothing
physically wrong with these patients; they were alcoholics or major depressives,
or whatever." On the other hand, when Dr. Hyde examined the ME/CFS patients who
came to his practice in Canada, he didn't find any of these things.
When the original board met at the CDC in 1988 to establish a case definition
for CFS, Dr. Hyde was in attendance, because those interested in this type of
diseases were invited to come. He said that "it was obvious to those who had
actually seen ME/CFS patients
that the vast majority of the people on the board were researchers who had never
seen an ME patient clinically."
Dr. Hyde said that the definition this board developed totally warped the whole
concept of ME/CFS-type disease, because the authors
introduced the word "fatigue" into the name. Fatigue can be produced by many
things, and it is a totally undefinable term in his view. Furthermore, in the 50
epidemics up to that time, fatigue had only occurred in one. What actually did
occur in these epidemics again and again was central nervous system (CNS)
derangement: sleep dysfunction, cognitive problems, and in general, difficulties
with any tasks the brain is required to perform.
According to Dr. Hyde, the second factor that came into the picture in 1988 and
was perpetuated as well in the development of the
revised 1994 Fukuda et al. case definition process as well those carried out in
other countries, was that they brought in more psychiatrists. The overall result
was that the definitions were developed primarily either by epidemiologists who
were in his view
forced by the government to go and start looking at these patients and produce a
definition, or by people who did not believe that
there was any physical thing wrong with any of the people who had what they
called CFS.
Dr. Hyde said that at a meeting initiating the development of the 1994
definition there was not a single clinician on the entire
board, with one exception, and he therefore got up and said, "Why don't you put
some people on this board who have actually seen
patients?" He said they accommodated by adding one more who had. Dr. Hyde said
the people on the board were brilliant, but they had
never seen a case of CFS. According to Dr. Hyde, bringing in so many physicians
who had never actually seen CFS patients, and
particularly psychiatrists, who wanted to say that these patients had depression
or anxiety or some other psychiatric problem, and
trying to accommodate these extremes in the definitions destroyed the reality in
the definitions that resulted.
Dr. Hyde quoted a 1993 paper by Dr. William Reeves of the CDC, to wit, "Chronic
fatigue syndrome has no confirmatory physical signs or
characteristic laboratory abnormalities, and the etiology and pathophysiology
remain unknown." In Dr. Hyde's view, any reasonable
physician who did not actually deal with CFS would conclude from reading this
that CFS had to be a form of psychiatric or somatizing
illness. He said that we need to redefine what is going on, and that there is a
lot of good evidence with which to do so. He said that a good part of the 1994
CDC definition would just as well describe someone who had just finished
climbing Mount Everest. He noted that this definition paper contains over 15,000
words, and suggested that those writing it could not have been very clear on
what they were defining, to have to use so many words.
[Note by Rich: In the light of these comments by Dr. Hyde, I found it very
interesting the next day at the open session of the AACFS
conference to hear Dr. Reeves make some remarks about the history of the
development of the 1994 case definition. He had just finished
reporting that the CDC plans to develop an empirical case definition from its
epidemiological studies on actual people who have CFS,
which sounded to me like a very positive step forward. Then he contrasted this
with what had been done in the past (and I am able
to present this verbatim, because I had a tape recorder running), "The current
case definition is what we have. It was basically--uh,
being an author I can do this in the crudest terms--a bunch of old cronies in a
cigar-filled room writing on their favorite symptoms.
Now those old cronies in this--we weren't smoking cigars because this was at the
CDC. There were people in fact who deal with CFSpatients for a living, but the definition was not based on empiric data. It was
based on impressions of patients."
These two testimonies are also in substantial agreement with the account given
by Hillary Johnson in her book about the history of
CFS, Osler's Web (see pages 636 and 670).]
Dr. Hyde's Definition of Myalgic Encephalomyelitis (ME)
Dr. Hyde stated that he believes that "If a disease cannot be scientifically
measured or appropriate tests made to confirm its presence, it cannot be defined
or treated with any assurance of success. Without the ability to measure or test
for a disease, most physicians will reject the concept entirely or state that
the illness is psychiatric, psychological, or social in nature."
He went on to set forth his definition of ME: "ME is a measurable, diffuse
post-encephalitic illness. The illness is characterized by
(1) its acute onset, (2) the diffuse, non-focal persisting nature of the
encephalopathy, and (3) the chronicity of the resulting
symptoms. These symptoms consist of the rapid exhaustion or loss of stamina of
motor, sensory, intellectual, cognitive and emotional
abilities. ME is of infectious/autoimmune origin and less commonly, a
toxic/autoimmune origin. ME occurs in epidemics and sporadic
cases." He further noted that in the case of epidemics, the observed incubation
time of 3 to 6 days rules out both Epstein--Barr
virus and HHV-6 as causes, because they have incubation times of approximately
40 and 12 days, respectively.
[Note by Rich--Basically, what he's saying here is that ME starts with an
inflammation of the brain that occurs rather suddenly. This
initial inflammation usually results from an infectious/autoimmune process, but
it can also be caused by a toxic/autoimmune process.
This sudden, short-term inflammation is followed by a disorder of the brain that
continues over time. This chronic disorder of the
brain is not localized to a small part of the brain, but is spread out over
large regions of the brain, and it leads to chronic
symptoms that can involve essentially all the normal functions of the brain. ME
occurs both in epidemic-type clusters of cases as
well as cases that are occasional and isolated.]
Dr. Hyde said that though the primary injury in ME is the diffuse CNS
encephalopathy, the illness may cause or be associated with
measurable dysfunction in end organs and various body systems. The most commonly
injured end organs and systems are (1) the thyroid
gland, (2) the cardiovascular system and (3) the immune system. The CNS
dysfunctions are caused by widespread, measurable, diffuse micro- vasculitis
affecting normal cell operation and maintenance. [Micro- vasculitis means
inflammation of small blood vessels.]
He went on to say that in ME, "the brain changes are not progressive but of
acute onset and relatively stable over a period of years." The evidence would suggest that ME is caused primarily by a diverse group of
viral infections that have neurotrophic [Note by Rich--I
think he meant neurotropic] characteristics and that appear to exert their
influence primarily on the CNS arterial bed. The available
brain technology limits the viral site of action to the capillaries and
microarterial CNS bed. This diffuse vascular site of injury
rather than a neurological cellular site of injury explains the natural history
of ME-type illness."
[Note by Rich--What he is saying here is that there is evidence that the
causes of ME are any of a group of viruses that are able to
infect the brain. By means of high-resolution SPECT scanning, he can tell that
they mainly affect the small arteries and capillaries
in the brain.]
"It is also noted that many ME patients also have generalized arterial
pathophysiology [Note by Rich--In other words, there are
problems with the arteries all over their bodies.], causing various vascular
problems that include in numerous patients: (1)insufficient blood pressure increase on exertion, (2) hyperelasticity and
hyper-contractibility of arterial blood vessels,
(3) various forms of arterial mediated vascular orthostatic pathophysiology
[Note by Rich--In other words, they have difficulty standing up because of problems with their arteries as demonstrated by Drs. David Streeten, David Bell, and Peter Rowe, and (4) cholinesterase dysfunction in the arterial wall, causing arterial elasticity dysfunction as demonstrated by Dr. Vance Spence at Dundee University, Scotland."
(Note by Cort - its interesting that POTS - the form of orthostatic
intolerance most commonly experienced by CFS patients often has an
infectious onset - as, of course, does CFS.)
[Note by Rich--Dr. Spence and his group have found that when they inject
acetylcholine into the forearms of CFS patients using a
special electrochemical technique, the arteries dilate more than normal, and
stay dilated longer than normal.]
Dr. Hyde noted that Dr. Erich Ryll had described the 1975 epidemic at the Mercy
San Juan Hospital in Sacramento, California as epidemic
vasculitis.
Dr. Hyde also mentioned that as part of his testing protocol, he runs a
Persantine (dipyridamole) stress test. This agent dilates the arteries and
causes an increase in the heart rate. He finds that if a patient has acute onset
ME, or sometimes gradual onset CFS, and particularly if they also have FM, this
agent will instantly cause intolerable pain all over their body, which is
eliminated right away with an antidote, but he believes that this is another
indication that there is a problem with the arteries in this disorder.
He believes that another indication is that if a cardiac stress test is run on
one of these patients, the heart rate and blood pressure will often decrease,
rather than increasing as they do in a person who is a "couch potato" (i.e. out
of condition) but otherwise healthy. He also mentioned observations of low total
circulating blood volume in these patients, sometimes as low as 40% of normal,
as another problem involving the vascular system. An additional test he runs
that points toward vascular problems is a Doppler ultrasound examination of the
transcranial arteries at the back of the head. These arteries are found to be in
spasm in these patients.
He reported his finding that "Depending upon (1) the severity and persistence of
the initial encephalopathy, (2) the locations and
extent of the brain areas affected, and (3) the initial and consequent organ and
system injuries, the severity of the patient's
clinical illness and disability generally increased with increased central
nervous system SPECT changes."
Dr. Hyde's Definition of Chronic Fatigue Syndrome (CFS)
Dr. Hyde stated that in his view that "CFS comprises two systemic illness
variations: (1) an acute onset central nervous system disabling illness that he
believes should be referred to as ME rather than CFS, and (2) a cyclical or
gradual onset disabling illness consistent with any of the increasing number of
ponderous CFS definitions in use at the present time."
He went on as follows: "Gradual or cyclical onset CFS illness can be subdivided
into three principal categories:
(1) Acute onset ME that has been misinterpreted as a gradual onset disease.
(2) A single disease or illness state causing a fatigue and cognitive illness
and frequently a pain and sleep dysfunction. This
may be due to any number of recognized diseases or injuries whose diagnosis has
been missed due to inadequate investigation. Routinely in the examination of
reputed CFS patients I find missed myocardial infarcts (at least 5 to 10 % of
patients), missed cerebral-arterial obstructions, multiple sclerosis (perhaps 5
% of patients) and genetic diseases.
(3) Perhaps the most interesting type of illness of the CFS group is when the
patient has a large number of recognized illnesses or
pathologies or injuries that have not been diagnosed. Individually, many of
these pathologies might not be disabling, but cumulatively
they will cause the patient's overall disability. The insurance physician will
latch onto one disease entity and make statements such as: 'There are many
people with this condition, and they seem to be able to work.' The point is that
an individual can sustain a large number of injuries and pathologies and still
be capable of going on. But there reaches a point when the organism can no
longer
tolerate the number of disabilities without being chronically exhausted. It is a
case of the straw that broke the camel's back."
Dr. Hyde went on to explain his view of why group (3) is present: "Since Osler
[Note by Rich--Sir William Osler (1849-1919) was a
Canadian-born physician who became a professor of medicine at McGill, Johns
Hopkins and Oxford Universities. He wrote an influential textbook of medicine
and had a major impact on the teaching and practice of medicine] physicians have
attempted to find one disease underlying a patient's illness, with the concept
that once found this identified disease can be potentially treated and the
patient made better. This is a very efficient concept and solves the problem of
most illnesses, if there is a cure."
However, he says, "the theory doesn't consider the possibility that an
individual may have a large number of pathophysiological conditions, and that it
is the significant number of illnesses that causes patients to be chronically
exhausted. In some extreme
conditions I have found patients with as many as 20 disabling diseases.
Commonly, I find in excess of eight or nine. The body and brain of the
individual can only tolerate a certain degree of pathophysiological weight.
Unfortunately, when a physician finds one disease state and treats it, and the
patient does not improve, rarely does the physician
investigate the possibility that there are multiple causes to explain the
patient's illnesses. When this happens, the patient may
be blamed for not getting better. Worse, the patient may be told that their
problem is psychological or social. When multiple diseases are the cause of a
fatigue state, sometimes some of these diseases may be treatable. When a
sufficient number of these problems can be treated, the patient sometimes will
show dramatic improvement."
Results of Dr. Hyde's Clinical Examinations
Dr. Hyde reports the following: "There are times that the discoveries made using
this investigation protocol has saved the lives of patients.
"There are times when we find a large number of pathologies, some that are
treatable and some that are not treatable. Often when we treat those that physicians know how to treat, the patient improves to the point
that they can return to work.
"There are times when we find a large number of medical problems that we cannot
treat, and yet this is almost always sufficient to
win a disability pension for these patients.
"There are times when I cannot help the patient except to explain to them the
actual cause or the many causes of their illness. This is
of enormous emotional benefit to the patient, and opens much better channels for
future treatment, since the patient and I both know why
they are ill and what has to be treated when a treatment becomes available.
"When I find a pathological subsection I usually do more in-depth testing in
that particular area, so that when I send the patient to
the appropriate specialist, the specialists do not have to waste their time
repeating obvious tests."
Recovery of ME Patients
Specifically concerning patients that he has diagnosed as having ME using the
SPECT scan, he made the following observations:
"Recovery depends largely upon the extent and severity of the initial measurable
SPECT brain changes. The ME patients most likely to recover were those patients
who had the least SPECT CNS involvement." Dr. Hyde distinguished the following
three types of ME, based on his SPECT observations:
"Type I ME: Patients who demonstrate primarily a mild persisting
encephalopathy of only one of the brain hemispheres are most likely
to have some chance of recovery.
"Type II ME: Patients who demonstrate an encephalopathy involving both
cerebral hemispheres rarely or never recover.
"Type III ME: These patients have both a bilateral cortical hemisphere
and a subcortical encephalopathy. Type III patients have the most severe and
most chronic form of illness and demonstrate the largest degree of increased
end-organ pathophysiology."
Dr. Hyde emphasized that the changes he observes on the SPECT scan in ME
patients are not found in healthy people, and that they are
clear evidence of disease.
He believes that the causes of these changes could be viral, chemical, or
autoimmune agents.
He further believes that "These central nervous system changes can potentially
affect other body organs and systems that are controlled
by the specific CNS areas injured, and that these organ and system changes are
also measurable."
[Rich's comment--I suggested to him that perhaps these organ and system
changes are not caused by the CNS changes, but instead that both result from a
common cause, namely glutathione depletion. I made this argument on the basis
that glutathione is responsible for protection of all the body's organs,
including the brain, from damage by reactive oxygen species, certain toxins, and
(by its participation in the immune system) pathogens, including viruses. It
remains to be seen whether this will turn out to be true.]
Dr. Hyde's Observations of Thyroid Cancer in ME/CFS Patients
Dr. Hyde made the startling announcement that in the past 100 patients whom he
has investigated for ME/CFS with or without FM, he has found that 7% of these
patients had thyroid cancer. This is surprising, in that thyroid cancer is
usually found in 0.5 to 1 patient per 100,000, which is a prevalence that is a
factor of 7,000 to 14,000 lower than he has observed in his patients!
In each of these patients, the diagnosis was made by ultrasonography and needle
biopsy under ultrasonography, This was followed by
surgical removal of the thyroid, and in each case the malignancy was confirmed.
Each of these patients had a history of acute onset of
their illness, and significant ME/CFS and/or FM for 5 to 7 years prior to the
discovery of the thyroid malignancy, including significant brain dysfunction.
Each had Type III ME, based on the SPECT scans. The pathology reports on the
first six of these patients indicated that they also had Hashimoto's thyroiditis.
Five of these six had normal serum levels of TSH, free T3, free T4 and
microsomal antibodies. The other showed elevated microsomal antibodies, but
normal TSH, free T3 and free T4.
Dr. Hyde reported that 25% of the rest of his patients who do not have thyroid
cancer do show ultrasound evidence of Hashimoto's
thyroiditis or other thyroid injury, many without abnormal TSH, free T3 or free
T4, but a "modest number of these with antibody signs of
thyroid disease."
Another very interesting thing that Dr. Hyde reported was that after these
patients with thyroid cancers had had their thyroids removed,
they were given thyroid replacement hormones and were closely supervised by good
endocrinologists, but there was nevertheless no improvement in their fatigue
syndrome.
He also noted that five of these six patients had cervical disc disease, but
only one had a history of neck trauma.
Dr. Hyde recommended that all ME/CFS patients should be evaluated by thyroid
ultrasound and, where appropriate, needle biopsy to rule out thyroid malignancy
and other thyroid pathology. The fact that ME/CFS patients may have normal blood
serum values of TSH, free T3,
free T4 and normal microsomal and thyroglobulin antibodies does not eliminate
thyroid disease
[Note by Rich: Wikland (2001) reported that about 40% of patients suffering
from "chronic fatigue" showed evidence of chronic autoimmune thyroiditis by fine
needle aspiration cytology, even though TSH levels were in the normal range in
many of them.]
Dr. Hyde also concluded that "A chronic Hashimoto's Encephalopathy- like
syndrome may be concurrent with ME/CFS patients who have
thyroid malignancy or multinodular thyroid disease or other thyroid pathology
and chronic subcortical and cortical brain SPECT changes.
Non-recovery after thyroid malignancy surgery and adequate thyroid hormone
replacement may be related to this chronic ME/CFS
encephalopathy. ME/CFS patients without thyroid malignancy yet with treated
thyroid pathology, and who have not recovered from their
fatigue syndrome, may also have a similar NeuroSPECT brain dysfunction."
[Concluding comments by Rich--Dr. Hyde is one of those few physicians who has
been in the ME/CFS field continuously since the early days when CFS began to
receive official recognition in the mid- 80s. He has clearly done important
investigations of the history of this disorder. He is coeditor of a major
textbook in this field, published in 1992 (available from
http://www.nightingale.ca). He probably
does the most detailed testing of his patients of any physician in this field.
He calls things as he sees them.
I found this talk extremely interesting, though somewhat foreboding in the
prognoses it suggests. His observations of vasculitis in
the brain and of thyroid cancer in ME patients seem to me to be very profound
and significant. While the pathogenetic origin of these
features remains to be scientifically established, my current hypothesis, which
I have shared with Dr. Hyde, is that glutathione
depletion lies at the basis of both, as I believe it lies at the basis of many
other features of the pathogenesis of these disorders,
as I have explained in my recent AACFS paper.]
Rich Van Konynenburg, Ph.D.
