BECAUSE MYALGIC ENCEPHALOMYELITIS (M.E.) HAS HISTORICALLY ARISEN IN
DISCREET CLUSTERS AND SMALL CLUSTERS, IT HAS MANY NAMES. THE TENDENCY
TOWARDS ENGLISH NATIONAL NAMES FOR THE DISEASE HAS MADE THIS PROBLEM
WORSE. CFS, CFIDS, POSTVIRAL FATIGUE SYNDROME, AND FIBROMYALGIA WITH LOCAL
AND NATIONAL VARIATIONS,ALL REFER TO CFS. SO DID THE TERM "NEURASTHENIA"
PRIOR TO THE ADVENT OF FREUD. AFTER FREUD, THE CLINICAL SYNDROME WAS
SOMETIMES CONFUSED WITH NON-MEDICAL DISEASE.
By Jane Colby. [NOTE: In the
early 80's Coxsackie virus was
identifiedby Dr. Behan as having caused an epidemic at a Glascow medical
facility.
He called the disease which appeared to be a sequeli "Myalgic
Encephalomyalitis". When a viral epidemic in Lake Tahoe and Yerington, NV
caused the same illness, the Coxsackie virus was not identified there, but
a
cattle virus called HHV6, a virus which was heavily implicated in early
AIDS cases. Before the AIDS virus was found, a SAn Francisco Chronicle
cartoon "The Far Side" showed a man sitting across from a physician with a
chart. The man is wearing cow horns and the doctor says, "Well sir, I
believe you have cows." The cartoon was there when I went for a throat
culture which proved negative for bacteria. A few days later I was in bed
with a badly swollen spinal area and in a condition familiar to many PWCs.
Other viruses such as the Simian CMV found in
PWC's but not in all but a few controls, have been identified with the
disease. The first virus to be identified in victims in the United States
was EBV, though for the most part only high antibody titers were used for
diagnosis at the time it was identified. You can learn more about
viruses and CFS at the website of Dr.John Martin:
http://www.stealthvirus.com/
(DR. Martin has no connection with the following book extract,
except that I have just sent him a copy.)
As a PWC who had this disease as a child,I am very pleased at the publication
of this book. It is the first
book since the onset of the current epidemic to discuss the fate of
individuals who were
sick as children, or to honestly discuss Advanced and Post-M.E., a relief
to those of us who need this information disseminated to our fellow PWC's,
disability boards, and social workers. As discussed below, the involved
virus or viruses probably do not have the capacity to depress the
respiratory center as polio did. However, they can cause a form of
paralysis. It is probably not demyelinating, and is more similar to that
found in Pompeii's disease than that found in MS, though there is little
research on this form of paralysis in M.E. to date. More information
about Post-M.E.
can be obtained from the Florence Nightingale Association in Ottowa,
Canada. No address given. It is an effort too long in coming.]
The following is an excerpt from the recently published book "M.E.
-The New Plague" by Jane Colby, a former school principal turned writer and
researcher. The book, reviewed on page 55, uncovers strong evidence that
myalgic encephalomyelitis, (M.E., the British term for CFIDS) is a type of
polio which has, by historical accident, been given another name. Jane
warns that we are repeating the mistakes of the past, which have led to
further illness in polio survivors dacades later. She also includes a risk
factor list, survivors' lifestyle checklist, schools guidelines,
comparisons of M.E. with school phobia and a chapter on psychological
survival. Jane interviewed numerous experts including Dr. Fichard Brunl,
a post-polio researcher at the Kessler Institute in New Jersey. To order
"M.E. - The New Plague" see item #3240 on page 63.
By altering the population's resistance to a particular organism,
we alter the balance of infectious agents in the environment. Most of us
are resistant to polio viruses 1-3 through vaccination. But we have not
been immunized against the many other polio-related viruses,[such as
Coxsackie].
It is therefore not surprising that since the late 1950's the
incidence of M.E. has risen and risen, and experts predict that it will
trun out to be the commonest nuerological disease of the 20th
century.Indeed, it has already been estimated that the total M.E. cases in
1987 equal the 1953 polio cases. By suppressing the spread of these
enteroviruses we have opened the door to the rest.
It can be observed through case histories that, just as we see
post-polio syndrome 30 years after initial polio infection, so we are
seeing what I have called "post M.E." as well, in people who got M.E. as
youngsters.
A proposition from the Nightingale Foundation in Ottawa is that,
in fact, M.E. and post-polio are one and the same condition. What has
arisen is: "Two new diseases with different names, with different degrees
of acceptance and exactly the same set of symptoms at exactly the same
time.
it is unrealistic to believe that we are dealing with two different
disease processes and two different causes."
Alternatively, and because of the difference in the detail of
symptoms between post-polio people and those with M.E., we might be able
to say that M.E. in youngsters is the equivalent of acute polio in
youngsters, and that post-M.E.(in sporadic adult cases) is the eqivalent
of post-polio, developing years after the original infection.
If M.E. and polio are enteroviral conditions, simply
variations upon one another, then the "sequelae" or later complications,
are
post-enteroviral conditions. This has far reaching implications. Around
90% of polio survivors have gone on to develop post-polio syndrome. It has
been predicted that this will eventually rise to 100%.
In addition, those children who, back in Iceland in 1948,
developed M.E., (then called Iceland disease) were followed up decades
later and the majority still had symptoms.
[Post Polio expert] Dr. [Richard] Bruno points out that physical
over-activity is the biggest cause of post-polio symptoms. (See Dr.
Bruno's "Fainting and Fatigue" in the Spring 1996 Chronicle, page 37.)
What are we doing to our teenagers with M.E. when we force them
back to school, deny them home tuition and tell them to exercise as a form
of therapy?
We know that muscle cells in M.E. have faulty "battery" mechanisms
and that energy cannot be readily regenerated. The aerobic/anaerobic
cycles are disrupted, so that if we overwork muscles affected by M.E., the
fibers that can work without oxygen, and that are there for use in
emergencies, get over-used, potentially causing damage.
It is well-known amongst people who are trying to get over M.E.
that exercise, often undertaken early on in the disease in an attempt to
get fit again, can make them a great deal worse. This is partly because
the muscles are not able to function like healthy muscles. But the
knowledge of the behavior of enteroviruses goes even further towards
explaining why this should be.
[I hope to post a second installment of this
within the week. Maybe I can also tell you where
that canyon smoke was coming from a few months
ago -- Kathleen]
