by Judith Silverman
The name Myalgic Encephalomyelitis is the most historically researched,
documented and descriptive name for the debilitating disease that is now
currently known as Chronic Fatigue Syndrome.
The dictionary definition of the name Myalgic Encephalomyelitis means pain in
the muscles (myalgic) and inflammation of the brain and spinal cord
(encephalomyelitis). The controversy seems to be about the inflammation in
the brain and spinal cord. Supposedly there is no evidence that this
inflammation exists. I disagree!
Some of the manifestations of CFS/ME such as orthostatic hypotension
demonstrate that an inflammatory process has already taken place.
Orthostatic Hypotension has both neurogenic and non neurogenic causes. I am
going to present some of the parallels of symptoms of people with CFS with
those of "accepted" neurologically based diseases such as poliomyelitis,
Guillian Barre, Transverse Myelitis and MS.
Myalgic Encephalomyelitis shares a common history with the poliomyelitis
virus. Research done by Dr. Sabin in 1947 demonstrated that a "mild" type
of poliomyelitis "Summer Grippe" did not have to paralyze in order to damage
the brain and spinal cord. Something to remember is that you have to lose
over 50% of your motor neurons before you become paralyzed. Most of us were
not paralyzed.
The following is a list of reasons why the name Myalgic Encephalomyelitis
must be restored in order for relevant past research to be considered, and
point current research in the correct direction in order to result in helpful
treatment protocols and a cure for ME/CFS.
TO EXPAND ON THE LIST ABOVE OF ITEMS 1 THROUGH 5:
Historical Significance of Poliomyelitis and Myalgic Encephalomyelitis; and
proof that nonparalytic polio causes neurological damage which later may be
expressed as post polio syndrome or CFS/ME: (#1 and #2 above)
There has already been excellent research done on this subject by Dr. Richard
Bruno, a post polio researcher at Englewood Hospital and Medical Center in
New Jersey which concluded that "Potentially half of those diagnosed today
with CFS may in fact have had Summer Grippe or undiagnosed non-paralytic
polio as children in the years before the polio vaccine became available. . . .
http://www.englewoodhospital.com/ASP/fullstory-arch.asp?storyid=17
Please read Doctor Bruno's recent article concerning Parkinson's Disease and
"Polio survivors with severe daily fatigue had significant word-finding
difficulty."
for Dr. Bruno and Dr. Sabin (Summer Grippe) and the treatment of PPS go to
http://members.aol.com/harvestctr/pps/lib2.html
In Dr. Bruno's Parallels between PPS and CFS he documents the parallel
histories of poliomyelitis and M.E. "Beginning in Los Angeles in 1934 and
continuing for more than twenty years, there were over a dozen outbreaks of a
disease that was at first diagnosed as poliomyelitis, then as "abortive" or
"atypical" poliomyelitis and finally named "Myalgic Encephalomyelitis."
. . . . Unlike poliomyelitis, there were frequent complaints of numbness or
parasthesias, usually no respiratory involvement, infrequent paralysis or
muscle atrophy and almost invariable no fatalities." Dr. Bruno also reports
on the experiments that Dr. Sabin did with specimens from the "Summer Grippe"
children that showed that spinal cord and brain stem neurons were killed by
the "mild" nonparalytic poliovirus. Dr. Bruno said, "Sabin showed us that
even a "mild" poliovirus infection could cause neuron damage that, although
not apparent in terms of causing polio-like symptoms, was very real."
The history of our illness (ME) goes back long before the outbreak at Incline
Village in the 1980's.
----------------------
But what about people who were not even born until after the advent of the
polio vaccines who now have ME/CFS. There are still other infectious agents
that are attacking peoples neurological systems and paralyzing some, and
leaving others with damage that could present as numbness of the extremities
and/or damage to the autonomic nervous system----such as orthostatic
hypotension (NMH).
The names of two of these illnesses are: Transverse Myelitis (Acute
Encephalomyelitis) and Guillian Barre. Please note that the CDC also
recognizes the similarity of both Transverse Myelitis and Guillian Barre to
poliomyelitis. I have quoted just a few sentences below, but you can read
their entire monthly report, if you wish, at the following site. (The
report is about the oral polio vaccines in China and is updated to 2000.)
http://www.cdc.gov/mmwr/preview/mmwrhtml/00044717.htm
(side note)
My doctor is now treating a number of patients who recovered from either
Transverse Myelitis or Guillian Barre Syndrome, and now have been diagnosed
as having Chronic Fatigue Syndrome. I am one of those patients. Is
CFS/ME really PPS?
I believe the symptoms are similar if not identical.
----------------------
Since I was initially misdiagnosed as having Guillian Barre Syndrome, I have
been receiving their newsletter for years and have noticed the similarity in
symptoms and viruses/bacterias that were being researched as potential
causes. I will not go into more detail but suggest you go to the Guillian
Barre website and read their latest Medical Issue: articles such as the
"Residual Effects following Guillian Barre" and the one that talks about the
Campylobacter jejuni Infection and all the other suspected bacterial and
viral connections.
http://www.webmast.com/gbs
(Click on Medical Issue Online)
You should then go to the Tranverse Myelitis site at
http://www.myelitis.org
and read the article written by Dr. Joanne Lynn concerning Transverse
Myelitis: Symptoms, Causes and Diagnosis. Dr. Lynn's article will
familiarize you with some of the Viral and Bacterial infections that seem to
present at the same time as the acute paralysis. You will recognize them:
herpes, Epstein-Barr, enteroviruses (poliomyelitis, Coxsackie virus,
echovirus), mycoplasma, lyme, influenza, HIV etc.
. . .Vaccination is well known to carry a risk of the development of acute
disseminated encephalomyelitis (ADEM) which is an acute inflammation of the
brain and spinal cord.
The Newsletters are interesting in that it demonstrates that similar research
(stem cell) that is taking place at Johns Hopkins is also taking place at
Salk Institute here in San Diego. This research will hopefully benefit:
parkinsons, ALS, TM, PPS. Will it also benefit CFS/ME patients?
http://www.myelitis.org/newsletters/newsletter3-2-04.htm
Johns Hopkins currently has a dedicated researcher named Doctor Douglas Kerr
who is studying Transverse Myelitis and is in charge of the Transverse
Myelopathy Center at Johns Hopkins:
http://www.med.jhu.edu/jhtmc/
I am currently corresponding with a person who developed TM after mono. But
remember one does not have to be paralyzed in order to have sustained
neurological injuries. For those of us whose trigger illness was
Mononucleosis, please be aware that some of the complications of mono are
encephalitis, seizures, brain inflammation, nerve abnormalities, etc. (Merck
Manual pages 919-920) Some mono sufferers need to take steroids to curb the
swelling in the airway passages. Our lymph nodes and areas around the eyes
also swell. Who says that spinal cords and brains do not. Many of us could
not even get out of bed for months.
--------------------------
I developed orthostatic hypotension after being ill from mononucleosis.
Unfortunately this was not diagnosed until four years later. In the
meantime, because of my symptoms of cognitive dysfunction, lack of balance
and unusual gait and a history of transverse myelitis, my physicians referred
me for an EEG and then MRI because they thought I had MS. Though I had
seizure activity on the EEG, there were no white spots (lesions) on the MRI
so I don't have MS.
So why are (lesions) white spots on a brain MRI of a CFS/ME patient usually
ignored and yet when they appear on a brain MRI of someone who has had
transverse myelitis, the patient is diagnosed with MS? Isn't it true that
CFS patients symptoms so closely resemble those of MS patients that unless
the patient carries the prior "label" of CFS in their file, that CFS patients
can and are being diagnosed as having MS if they have the white spots
(lesions) on the MRI.
Not long ago, I read a very fine article on Co-Cure by a prestigious
physician from Harvard concerning some of the ways to differentiate a CFS
patient from a MS patients (this is assuming they both have those spots on
the MRI). CFS patients have a history of orthostatic hypotension and people
with MS probably have a prior history of TM or foot drop. (I think I am the
missing link since I have all three.)
I believe that Orthostatic Hypotension is the key to proving that there is an
inflammation process that is taking place in CFS and that the name of Myalgic
Encephalomyelitis is totally appropriate.
You can read all about Orthostatic Hypotension (except in CFS/ME, since for
some reason CFS is not mentioned in this article) in "Evaluation and
Treatment of Orthostatic Hypotension" which appeared in the American Family
Physician at
http://www.aafp.org/afp/971001ap/engstrm.html
A few sentences from this article are: "Sudden-onset dysautonomia or
dysautonomia evolving over weeks may occur alone or in conjunction with
orthostatic hypotension accompanied by mild sensory or motor findings. Some
of these patients have Guillain-Barre syndrome with autonomic dysfunction as
the predominant clinical abnormality.
Secondary failure of the autonomic nervous system (due to a systemic disease
resulting in lesions of the central or peripheral nervous system) is a more
common cause of neurogenic orthostatic hypotension. The lesions can occur in
the brain, brainstem, spinal cord or peripheral nervous system. "
Please note in this article that Neurogenic Causes of Orthostatic Hypotension
include: MS, TM and GB. These three illnesses along with poliomyelitis all
share some similarities to CFS/ME. ((TM and GB both are linked with
encephalomyelitis processes. (See the TM and GB websites and Merck Manual
page 321 - Home Edition)).
(Just as a side note, Dr. Rowe currently has a research project going on at
the Johns Hopkins with Gulf War Vets that are experiencing Orthostatic
Hypotension.)
CONCLUSION:
There is plenty of evidence that points to inflammation and therefore the
name Myalgic Encephalomyelitis is totally appropriate.
The restoration of this name (M.E.) will restore and retain the historical
significance of the connection between M.E. and poliomyelitis and all other
polio-like illnesses.
To change the name CFS to anything else will only aid in obscuring valuable
clinical information gained over the past 50 years concerning the pathology
of the illness and possible future beneficial treatment protocols for M.E.
patients.
Judith Silverman
Permission to Repost Entire Article.
Originally posted to the Internet on
Mon, 12 Mar 2001 12:38:45 EST.
http://www.englewoodhospital.com/ASP/fullstory.asp?storyid=49
Polio-Like Paralysis still occurring today: (#3)
"Since 1994, no cases of indigenous wild poliovirus infection have been
detected in China despite substantial improvements in surveillance. In
addition, the number of reported polio cases decreased 99% during 1990-1995.
The remaining cases since 1994 were reported as polio based on clinical
criteria (none were laboratory confirmed) and may represent misclassification
of other causes of polio-like illnesses (e.g., Guillian-Barre syndrome or
transverse myelitis) and vaccine-associated polio."
Both TM and GB share as causation factors: (a) adverse reactions to
vaccinations and (b) infectious viral and bacterial trigger agents also
common to CFS/ME patients: (#4)
MRI (lesion) evidence and similarities in MS, TM, GB and CFS/ME.
Transverse Myelitis (TM), Guillian Barre (GB), and MS are accepted
neurogenic, causes of Orthostatic Hypotension. (#5)
The bottom line to this very long post is that CFS/ME patients have developed
many of the same symptoms and lesions on their MRIs that people who have had
a documented paralyzing neurological insult such as Polio, MS, TM and GB.
Contact RESCIND president Tom Hennessy at RESCINDINC@aol.com
Webmaster: Roger Burns rescind-web@yahoogroups.com