The Committee for
Justice
and Recognition of
Myalgic Encephalomyelitis
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Why Are The Epidemics So Important?
Community outbreaks of Atypical Poliomyelitis,
Epidemic Neuromyasthenia (ENM) or Myalgic Encephalomyelitis (ME) have been
described in the medical journals for many decades. In recent years medical
scientists have documented a large amount of ME disease pathology. These
findings include involvement of the brain stem and hypothalamus; cardiac,
immune system, mitochondria, vascular and metabolic abnormalities, laying open
a devastating picture. Nevertheless the most shocking revelation about this
disease has been its epidemic explosion: from a rare disease to some 20 million
and growing. Thus we must explore the epidemic context of ME to gain insight of
the history and the danger to our communities and families everywhere.
The outbreak in Los Angeles, California in 1934 is most cited as the first well documented outbreak of ME. The 1934 outbreak, like most eventually affected a wide area, and for years afterward sporadic cases were reported. However, the official reports focused on the 200 staff members of the Los Angeles County General Hospital who were affected that summer. As with many of the other outbreaks it occurred during a local polio epidemic, had a high incidence among hospital staff and resembled a polio illness.
The US Surgeon General undertook a major
investigation of the Los Angeles outbreak, led by Dr Alexander Gilliam, and
published the extensive report about this illness: US Public Health Bulletin
1938. This was a landmark effort as it extensively described the illness,
and for the first time made it clear that there was a new disease present:
while this illness was Polio-like it was not Paralytic poliomyelitis. The
landmark US Public Health Bulletin referred to the new disease, with features
of a chronic polio-encephalitis, as "Atypical Polio".
There were many similar outbreaks of ME over the years. Some were well known, such as the Iceland epidemic of '48 and the outbreak at the London hospitals in 1955, where the well known infectious disease specialist Dr. A Melvin Ramsay began his detailed investigations. Again the epidemics focused attention, and the medical journals reported on the outbreaks and examined the similarities with Poliomyelitis. While the principal differences were a broader array of symptoms, absence of poliovirus, a prominence of myalgia and a chronic active or relapsing course in many, nevertheless it was consistent with an encephalomyelitis. The term Myalgic Encephalomyelitis has been used since that time.
The British CMO (Surgeon General) Dr. Donald Acheson authored the major review of this epidemic disease in The American Journal of Medicine, 1959. In the 1960’s ME became codified as a neurologic disease at section 323 of the International Classification of Diseases (ICD).
This same chronic encephalomyelitis infectious disease continued to be reported by many (including Drs. Henderson, Shelokov, Poskanzer, Pellew, Leon-Sotomayor, Richardson, Ryll, Dowsett, Behan and Hyde) throughout the 1950’s, 60’s, 70’s and 80’s. This established a continuous record of the disease, Myalgic Encephalomyelitis, which leaves large numbers permanently disabled.
The ME specialist Dr. J G Parish has identified 63 ME outbreaks, between 1934 and 1990, and also consulted in the recent Arizona outbreak. The list of these documented ME outbreaks is included below. Utilizing case summaries, the 1997 Arizona epidemic reported here brings epidemic ME into vivid reality, illustrating the diversity of manifestations, and sometimes fatal consequences.
Although ME and the outbreaks have been known and described for some time, on the broad landscape of disease ME was a rare infection. After the mass polio vaccination programs by the 1960's, polio vastly diminished and cases of ME seemed to have decreased as well. Yet by the late 70's an increasing incidence of ME had begun. By the early 80's, there were many community clusters and the dramatic worldwide spread of ME was in full gallop. For some reason the rare disease, Myalgic Encephalomyelitis, had exploded into a worldwide epidemic. Many millions worldwide are now disabled by ME.
The very alarming and most disturbing aspect of this disease is that amid this epidemic explosion of disease, the national public health agencies ignored the pleas from doctors in affected communities and failed to act. In the USA, the Centers of Disease Control and Prevention (CDC) at first ignored the reports, then without any need for evidence immediately declared that there were no outbreaks, and continued to detract concern and delay any investigation. Subsequently the CDC responded by obscuring the evidence, and confusing the medical community and the public regarding the nature, history and identity of this disease.
This disastrous response became formal policy when in 1988 the CDC dominated panel renamed this disease “CFS”, against the vehement objections of the specialist physicians with decades of expertise, who advised that what was being observed was a widespread reemergence of Myalgic Encephalomyelitis. In effect a group of inexperienced government employees invented Chronic Fatigue Syndrome and disregarded the medical experts. Pursuant to this policy to conceal the identity of ME, medical journals were encouraged to never again publish reports about Myalgic Encephalomyelitis but only articles that discussed fatigue.
Much of this history suggests that the CDC was not following a program to identify disease and cause, but some other directive. Rather than investigating this epidemic, the CDC appears to be acting to cover it up, and has pursued diversions and a plan to avoid discovering the cause. This has proceeded with a clear disregard for the consequences, the many fatalities and the huge numbers of disabled citizens.
Infectious diseases often occur in epidemics and the investigation of epidemics has been the most important tool to discover the nature and origins of disease. This most valuable science has been avoided by health officials regarding the ME outbreaks. One of the CDC’s primary duties is to investigate epidemics. But, in fact the CDC has never investigated an ME epidemic. Millions of disabled patients deserve to know the truth.
These government agency policies have not advanced the understanding nor have they proceeded to control or prevent the disease, instead the number of patients continues to increase: the public remains in danger. These policies are more consistent with a defensive effort to protect the interests of private industry rather than protect the public. Every person is at risk and the public is entitled to a vigorous program and mobilization of public resources to investigate and proceed to control this epidemic. The public deserves to know the truth.
Clearly, the greatest epidemic of ME to ever occur is the recent and ongoing flare-up that began in 1991 among young healthy military personnel. Many thousands from this epidemic have died. This population shares a common exposure. Many fell victim immediately, but the disease has disabled many more over the years. Those ill now include many spouses and occasionally other family members, demonstrating anew the infectious nature of Myalgic Encephalomyelitis.
ME is best understood in context, with detailed study of the outbreaks. Even though most cases today are considered sporadic, we also must recognize that new outbreaks persist and continue to spread disease; this report of the recent Arizona epidemic provides a wealth of information and insight.
The Committee takes note that while the CDC takes great pride, incites headlines and major mass media attention to their heroic pursuit of any potentially contagious illness outbreak, when it comes to outbreaks of ME they decidedly avoid any investigation. The Arizona outbreak is another example of this policy, refusing to investigate ME outbreaks, continuing the policy from the 1980’s, at the beginning of this explosive pandemic, with the outbreaks at Lyndonville and Lake Tahoe.
Our objective is to disclose the truth, the reality and the dangers of ME, so that the cause and cures can be discovered. Above all we must recognize the danger to families everywhere that unchanged the CDC and MRC malfeasance imposes upon an innocent public. We hope that these comments, the history and the various epidemics reported here will help provide a more complete understanding of the growing devastation that ME forces upon the public, and why the epidemics are so important.
The Committee has indications of renewed waves of escalation of ME, particularly in certain regions. We want to hear from you to help collect any reports of recent or new community outbreaks.
TCJRME
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The Recent Arizona Epidemic
The 1984 Lake Tahoe Epidemic
New California Epidemic 1975-78
List of ME Outbreaks 1934 – 1990
The Huge Military Outbreak Report
ME – similar to Polio virus infection
Comments from International Experts
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“ epidemic myalgic
encephalomyelitis, also known as epidemic neuromyasthenia, has attracted
increasing attention during the last 5 years, leading to a clearer definition
of its clinical and laboratory features and general agreement that its
distinguishing characteristic is severe muscle fatiguability, made worse by exercise.”
“The illness occurs
both sporadically and in epidemics, with cases being reported from all over the
US, Europe, Australasia, and South Africa. The difficulty in making the
diagnosis, however, usually means that it is not until an epidemic occurs that
random cases that presented in the preceding years are realized, in retrospect,
to have had (ME). Single cases may continue to appear after the epidemic has
ended. Thus, it is stressed that the syndrome is an endemic disease with
periodic outbreaks of epidemic prevalence.”
Dr. P.O. Behan, Prof. Neurology,
Critical Reviews in
Neurobiology, 1988, vol 4.
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M.E.
a Growing Health Disaster
"Within the group of viral-immunological illnesses common to the temperate world, ME/CFS represents a major world health and economic threat second only to AIDS. Yet governments persist in turning their backs to this health disaster. The majority of adult ME/CFS patients in all countries are teachers, health care workers, clergy, flight attendants and their immediate families. These individuals are involved in jobs of high contact with a potentially ill public or a public recently vaccinated or immunized. They also represent professions that receive more immunizations & vaccinations.”
“The cost of their unemployment represents a major loss to the state and to their community, as well as to their families. It is incredible that governments have not taken this threat more seriously. Yet there is no national government that has contributed significant funds to help solve this problem."
Dr. Byron M. Hyde,
The
Cambridge Symposium, April 1990
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Protect Yourself - Learn about ME - Educate your
doctors - Alert the Public
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These
reports on the recent Arizona outbreak are a valuable and eye opening
experience particularly for doctors and others not familiar our disease. The
details including summaries of individual patients clearly show the seriousness
of this disease and reveals with actual case examples the diverse consequences
patients face.
This outbreak has
been selected because it is the most recent community epidemic for which there
is excellent detailed information and where research reports about this
epidemic have been published.
We
are thankful to doctors Anderson, Martin and others for their vital work by
investigating and documenting the Outbreak of Epidemic Neuromyasthenia /
Myalgic Encephalomyelitis of 1996-97 in the Mojave Valley, Arizona. We are especially thankful since the
government health agencies as usual have declined to investigate or recognize
this recent epidemic.
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Fatalities among Virus Infected
Patients seen within the Mohave Valley region of the United States
D. Anderson (1), W. J. Martin (2)
(1) Willow Valley Medical Center, Mohave Valley, Arizona;
(2)
Center for Complex Infectious Diseases, Rosemead, California
An outbreak of an apparent infectious illness occurred in the Mohave Valley region of the United States in the Spring/Summer of 1996. Within a 5 month period over 100 patients from a catchment area of approximately 6,000 individuals presented to the Willow Valley Medical Center with acute onset malaise, generalized muscle pain, nausea, diarrhea (frequently projectile) and occasional vomiting, lasting for one to two weeks. One third of the patients had additional neurological manifestations at the time of presentation, including severe headaches and disturbances in sensory and/or cognitive function, with or without mood changes. Thirty-one patients had either paresthesia, numbness, photophobia, blurred vision or dysequilibrium with a positive augmented Romberg test. Twenty-two of these patients exhibited localized weakness involving an arm, leg or one side of the face. The cognitive impairment ranged from severe confusion and short-term memory loss to an inability to perform serial 7 subtractions. Eight patients were severely depressed. The neurologic symptoms were subtle and resolved within a period of several weeks in 26 of the 31 patients. Neurological symptoms persisted in the remaining 5 patients, recurred in others, and developed in at least a quarter of the patients who were free of neurological symptoms at the time of initial presentation.
Over the following year, more than 100 additional patients presented to the Willow Valley Medical Center with neurological symptoms of recent onset. The pattern of illnesses was unlike that seen in over 15 years of prior solo medical practice within the community, and clearly reflected an unusually high incidence of mild to moderate chronic encephalopathy. Routine laboratory testing was generally non-contributory. Blood samples from affected patients were tested in an assay capable of detecting "stealth adapted" cytopathic viruses. All of the blood samples tested gave strikingly positive results. This observation contrasts with the approximate 10% culture positivity seen with blood samples obtained from presumably healthy blood donors. While individual patients showed overall differences in specific symptoms, the core features of the neurological illness consisted of the following manifestations: i) Severe headaches often accompanied by photophobia, blurred vision, tinnitus and a generalized myalgia with tender points. ii) Episodes of marked physical and mental fatigue lasting several days to weeks. These episodes commonly followed periods of excessive exercise and/or emotional stress. iii) Subtle changes in personality marked by depression, irritability, emotional lability, anxiety reactions and impaired memory and communicative skills. iv) Difficulties in initiating and in maintaining normal refreshing sleep. v) Noticeable weakness of an arm or a leg, sometimes with altered sensations including paresthesia and numbness.
The severity of each of these manifestations differed between patients and even in individual patients over time. Patients often reported that other family members were experiencing some of the same symptoms as they were, but to varying degrees. There was a definite tendency for patients to show a lessening in the severity of symptoms with time and most patients regained much, if not all, of their former health. Many of the patients met the diagnostic criteria for the chronic fatigue syndrome (CFS). In contrast to the relatively benign course of the CFS-like illness in the majority of the patients, several individuals, including family members of mildly affected patients, have experienced over the last several years, severe atypical illnesses, often necessitating hospitalization. Moreover, several fatalities, potentially attributable to a viral encephalopathy, have occurred in stealth virus culture positive individuals.
The clinical
histories, laboratory and radiological findings, of ten fatal cases occurring
within the Mohave Valley and adjacent regions of California and Nevada are
briefly summarized as follows:
Case 1 was a nine year old boy with a biopsy-proven vaculoating (spongiform) encephalopathy. For over seven months, the child was considered to merely have a psychogenic behavioral problem stemming from his parents’ separation and divorce. He then began to show neurological signs, which improved significantly when ganciclovir therapy was begun by his attending neurologist. The child died from cerebral herniation, approximately two years after onset of his illness.
Case 2 died shortly after diagnosis and removal of a glioblastoma multiforme. Virus was cultured from both blood and tumor tissue removed from this individual.
Case 3 developed a normotensive hydrocephalus requiring a ventriculo-peritoneal shunt. Post operatively, she developed a herpes type eruption on her back along a surgical scar from a prior lumbar disc repair; and also developed what appeared to be herpes-like retinitis. She died following two stroke- like episodes.
Case 4 died with a severe worsening of a previously diagnosed sporadic cerebellar ataxia.
Case 5 was a 17 year old Native American boy who died from an apparent viral cardiomyopathy, accompanied by cognitive problems.
Case 6 died after a prolonged illness in which she sustained multiple cerebral infarcts leading to a chronic vegetative state and coma.
Case 7 had experienced progressive fatigue and cognitive impairment since 1996 and died unexpectedly three years later.
Cases 8, 9, 10 also showed rapid deterioration with the development of severe encephalopathy manifesting primarily as dementia and psychosis. No other precipitating causes for the profound neuropsychiatric illnesses in these three patients were identified, and each progressed to coma and death.
The potential linkage of the illnesses occurring
within these 10 patients to an infectious agent, is supported by i) the positive stealth virus cultures;
ii) recurring previous episodes of
impaired health in many of the individuals following the 1996 outbreak of an
apparently infectious disease in the Mohave Valley; iii) related although milder illnesses occurring in other family
members of the patients; and iv) the
relative rarity of any of these types of illnesses within the same community
prior to 1996.
CFS illnesses have been reported as occurring in outbreaks, and the
Mohave Valley region would appear to be yet another example of a CFS outbreak.
Based on our observations, it is tempting to suggest that CFS may, in fact, be
part of a broader spectrum of neurological and neuropsychiatric illnesses, that
can extend to a fatal encephalopathy.
[ Further
scientific and technical details are reported in the medical journal article
"Stealth Virus Epidemic in the Mohave Valley", Pathobiology, 1997, Vol. 65 . Can be seen here:
http://www.ccid.org/stealth/publications/msv.htm ].
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The clinical picture of the
Arizona Epidemic
Myalgic
Encephalomyelitis is a complex disease. Individual cases whether sporadic or
epidemic often begin with a severe influenza, a gastrointestinal or meningitic
episode, after which the chronic phases set in with a very great variety of
symptoms and secondary conditions. Amid this swarm of manifestations and
variation between individuals, Dr Ramsay, after many years of study, identified
a specific group of symptoms - muscle, brain and circulatory - to confirm the
illness (see the Definitions page). The above report shows some of the very
unfortunate results.
The following records
provide the more common experiences, from actual cases showing the diverse
true-life outcomes. For doctors, unfamiliar with ME, will find this report
truly instructive, while patients will recognize much of their own nightmares.
The various reports on this site also remind us that there have been many
outbreaks and ME epidemics continue to reappear to this day. Doctors seldom
receive support when encountering this disease and many clusters have gone
unreported. The epidemics are not a
myth or a legend, nor just history, they are with us today. These reports also
make clear that many patients go on to acquire a variety of consequences. Reports of new outbreaks from Japan, India
and Canada are causing concern. Another recent outbreak has occurred in
Tennessee and again the CDC maintains their strategy and has refused to
investigate. Unfortunately there has
been an alarming lack of interest from the public health agencies to
investigate or recognize Myalgic Encephalomyelitis.
_______________________________________________________________
Case Summaries Section from the article:
Multi System Virus Infection
with Encephalopathy In Mohave Valley, Arizona.
Donovan J. Anderson, M.D. of Willow Valley Medical Center and
W. John Martin,
M.D., PhD, of Center for Complex Infectious Disease
Abstract An outbreak of an apparent infectious illness occurring in the
Mohave Valley region of the United States was initially identified in the
spring of 1996. Many of the patients
were subsequently shown to be infected with an atypical cytopathic
"Stealth" Virus. This paper
provides a brief over view of the complex and diverse clinical manifestations
seen and multi-system stealth virus infection with encephalopathy (MSVIE) is
suggested to help define the nature of the illness present in these patients.
Case Summaries:
Normotensive
Hydrocephalus and viral Eye Infection: * B
Q: A 66 year old female with severe debilitating fatigue, insomnia, headache,
vision loss, disequilibrium. MRI showed cerebral atrophy with dilated
ventricles. Normotensive hydrocephalus was diagnosed, she was referred to a
neurosurgeon and he inserted a ventriculo-peritoneal shunt. She came back into
the hospital with a blistery rash on her lower back area and a severely painful
right eye. Slit lamp exam showed chroiditis and retinitis and she was diagnosed
with a herpes infection in the right eye. She was started on anti-viral
treatment and did quite well. She did not go blind but she is totally disabled
and has to use a cane for balance. She still has headaches and total body aches
along with severe insomnia and a mild form of dementia.
Acute Delirium associated
with Stealth virus Infection: * T M is a 55 year old
female who was admitted to the hospital with acute delirium. She had nausea and
diarrhea and was having hallucinations of being in a fight with the Devil. She
had a headache and pain mostly on the left side of her body. It was interesting
to note that she developed a neuropathic bilateral foot pain and she thought
some how the devil burned her. Pertinent lab work revealed 16,000 WBC’s with 81
segs one band. U/A neg. Blood cultures X 2 were neg. SMAK-20 normal except Ca
low 8.6 (8.8-10.5) Protein low 5.7 (6.4-8.2), Albumin low at 2.9 (3.4-5.0), alk
phos high at 140, phosphorus low at 1.9 (2.5-4.5). No history of drug or
alcohol abuse, urine drug screen negative. Prior history of breast cancer
surgery 3 years prior. MRI of the brain showed an unusual serpentine shaped
lesion in the right parietal lobe extending from the parasagittal cortex
inferiorlaterally along the body of the right lateral ventricle through the
basal ganglia, deep to the right sylvan fissure. The lesion does extend
somewhat anteriorly in the right parietal lobe into the region of the right
frontal lobe. The lesion is diffuse and amorphous and appears to include
numerous serptiginous structures. Of note, the lesion does not enhance thus it
does not appear to be a metastatic lesion. The radiologist didn’t know what it
was. Possibly an area of encephalomalacia. The patient had a lumbar puncture,
the opening pressure was 200mmHg. The Gram stain was negative of organisms,
India Ink stain negative for fungal elements. CSF was clear 0 WBC, 0 RBC’s,
protein 25, glucose 56, LDH 27, CSF chloride 121. Bacterial and fungal cultures
were negative. Stealth viral cultures done by Dr. Martin at CCID were markedly
positive in just 2 days, first on the MRC-5 line and then on the Rhesus Kidney
Cell line. Her WBC’s from peripheral blood was cultured as well and was
positive in a similar manner.
Migraine like Headaches
Associated with Stealth Virus Infection and Multiple Syncopal episodes: * S M is an 18 y/o Caucasian female who developed
Stealth virus infection, after taking care of her father, who had a rather bad
case of the disease himself. The father developed extreme headaches and
insomnia with fatigue and intractable nausea and vomiting and then became
rapidly demented. MRI of his brain showed a myriad of punctate lesions in the
subcortical and periventricular white mater. He became so forgetful, he would
get lost going to the store and had to stop driving because he would get lost
and not be able to find his way home. His headaches were so bad that he talked
multiple times of committing suicide to be rid of them. He had viral cultures
done on his blood and was markedly positive.
S M developed syncopal episodes
leading up to her diagnosis with ENM. She fainted 6-8 times in the year prior
to her diagnosis. She was told at the hospital the reason she passed out so
much was because she was hypoglycemic. On March 27, 1996 she developed what was
thought initially to be chicken pox. She was also pregnant about 3 months along
at the time. Over the next two months she developed dizziness and fatigue and
the beginnings of migraine level headaches. It is of interest to note, that she
developed noticeable weakness on her right side, mostly in her leg. Sometimes
her leg would give out and she would fall. Her baby boy was born about a month
early. He had some complications associated with prematurity such as
polycythemia and jaundice at birth he was hospitalized for 1 month after birth.
He was also hospitalized for 3 days for a viral like illness at about 3 months
of age.
S M now has constant daily
headaches and most of the other signs and symptoms of ENM. It is also
interesting to note that her EBV titers are all elevated, including the IgM at
231 (0-55) and it will be interesting to follow the course of the new born boy
to see what signs and symptoms he manifests over the next few years. He had
viral cultures done and was markedly positive with the distinct Mojave effect.
Stroke like Sx and
Atypical Seizures Associated with Stealth Virus Infection: * W J, This is a vignette of a 47 y/o Native
American male who developed stroke like symptoms along with atypical seizure
type activity after a bout with a viral gastrointestinal illness.
The patient comes to the
hospital with acute onset of right-sided weakness. The right side of his face
was drooping including his eye. His hand grip was noticeably weaker on the
right side and his leg was noticeably weaker on his right side as well. He also
had some atypical seizure like activity where he didn’t lose consciousness but
his chin started jerking uncontrollably and his body started jerking around and
lasted about 10 minutes. He was not incontinent of stool or urine. He didn’t
have the usual post ictal period and he could be "talked" into
stopping to a certain degree. Prior to having these unusual symptoms he had
frequent episodes of syncope and severe migraine like headaches. On his most
recent admission, CT scan of the head was done and was reported out as normal.
He also had viral cultures done which were uniformly positive for the Mohave
Stealth Virus effect. He refused lumbar puncture.
This patient has most if not all
the signs and symptoms of CFS or ENM. He is in generally poor health. He has
been a diabetic since age 19. He also suffers from chronic low back pains due
to 2 herniated disks at L4, L5. His health has deteriorated significantly in
the last 2 years to the point where he is totally and permanently disabled.
He has very unsteady balance,
occasional dizziness; in fact he even had syncope on several occasions and
passed completely out. He has neck pains and sharp pains between his shoulder
blades. He has muscle spasms in the shoulders and neck. He has severe
unrelenting migraine level headaches. He has short term memory loss. He has calculation
difficulties (can’t do serial 7’s) and he has orthostatic hypotension changes
(probably related to his syncope) He has quite severe insomnia and post
exercise fatigue. He has visual difficulties, with blurred vision and night
blindness. He has had some laser treatments to his eyes due to the diabetic
retinopathy. He has photophobia. He has chest pains off and on. He has episodes
of constipation alternating with diarrhea and some nausea. He has numbness in
is his feet consistent with diabetic neuropathy. He has aches and pains with
weakness and fatigue throughout his body. He feels as if he has the flu, and
when he is in flair up, he can’t even get out of bed, the pain is so
debilitating. He also has depression associated with this syndrome. Many of his
symptoms began during the peak of the epidemic in January of 1996 when he had
an acute gastrointestinal illness. It is interesting to note that his wife is
beginning to exhibit similar symptoms.
Atypical MS like symptoms
associated with Stealth virus infection: * V
C, This lady presents like a stroke or Multiple sclerosis type findings. This is a 39 y/o Caucasian female who
presents with abdominal pains, cramping, nausea and bloody diarrhea. GI
ultrasound was negative for cholecystitis. She developed severe tiredness and
fatigue along with migraine type headaches. She developed sore throats and
low-grade fevers. She came into the office with relatively sudden onset of
numbness in the right arm and numbness on the right side from the neck to the hip
area. Her grip by JAMAR was R-12kg L-20 kg. She was sent to the neurologist who
noted that she developed pain in the right occipital area. She started falling
a lot lately and has poor balance. She also developed weakness in the right arm
and leg. She noted problems with urinary incontinence as well
She had a MRI done at the
suggestion of the neurologist. It found subtle abnormalities adjacent to the
body of the left lateral ventricle. 2 small punctate hyperintense lesions in
the periventricular area shown on T2 weighted images.
She originally got sick in July
of 1996 with the GI flu like epidemic and she remains sick to this day. In
summary form, these are her symptoms: Severe exhaustion, or fatigue, post
exercise malaise. She has some irritability and some secondary depression. She
has difficulties with sleeping, headaches, and migraine level. Blurred vision,
numbness and tingling with weakness on the right side of her body. She has
severe muscular weakness recurrent sore throats and flu like symptoms. He has
painful nodes under the mandible and suffers from severe allergies. She had the
trigger points associated with fibromyalgia and has weight gain and muscle
spasms. She has diarrhea off and on with some nausea and has intolerance to
bright lights and is many times disoriented and confused. She had stealth viral
cultures done, and they were positive for the Mohave effect.
Stealth virus infection
associated with Chronic Fatigue Syndrome: * J
B is a 60 y/o Caucasian female who developed an acute onset of chronic fatigue
syndrome or epidemic neuromyasthenia in March of 1996 as a part of the larger
epidemic in the Colorado River Valley.
J B came down with the worst flu
of her life on or about March 10, 1996. She developed muscle spasms in her legs
and abdomen and a lot of pain in her legs and feet, to the point where she
could barely walk. She also had sleeping difficulties and heart palpitations.
She also had recurrent sore throats and stomach cramping with diarrhea and
nausea. She also had some headaches that were rather atypical. She noted bright
lights hurt her eyes, especially on the right. She noticed she couldn’t
concentrate as well as before she got sick and this persisted for months after
the initial illness. Her right side became weaker especially the arm and she
had some numbness.
In summary: She has been
extremely fatigued to the point where she can no longer work. She has
noticeable post exercise malaise. She has difficulty calculating in her head.
Word finding problems, sleeping difficulty, blurred vision, atypical headaches,
and intolerance to noise or sound. She has noticed severe muscle weakness and
recurrent flu like illness with sore throats and painful lymph nodes in her
neck area. She has noticed more allergies and skin rashes and she has the
trigger points of fibromyalgia. She gets intermittent diarrhea with intestinal
gas and bloating. She gets low-grade temperatures and has heart palpitations.
She has disorientation and confusion at times and has anxiety/panic, depression
and excessive irritability. She has noticed an alteration in taste and smell,
and she also has some ear pains. Her stealth viral cultures were uniformly
positive for the Mohave effect.
Stealth virus infection
related Fibromyalgia: * S M, This is a 60 y/o
Caucasian female who first developed symptoms after having a terrible case of
the "flu" her feet became painful to the point she could barely walk,
She said it was like walking on gravel or glass. The pain in the feet was so
severe that she couldn’t walk for a time. She also developed arthritis type
symptoms and abdominal pains mostly in the right upper quadrant. Her flu
symptoms consisted of nausea vomiting and diarrhea. She developed fairly severe
short-term memory loss acutely, to the point where she couldn’t work any longer
in her job as a clerk at the DMV. She forgot her password and couldn’t use the
computer. She then developed unilateral weakness on the right side. Documented
by JAMAR grip, she is right dominant but her grip on the right is 15kg and on
the left it is 30kg. It is of interest to note that her son who visited her
came down with the same "flu like illness" that lasted a couple weeks
and he too, had extremely painful feet. He has been lost to follow up. She
developed other cognitive function problems. Difficulties with word finding,
attention deficit and calculation problems, balance problems and spatial
disorientation. Along with these findings, she had difficulty sleeping, severe
headaches, blurred vision, anxiety and depression. She feels like she has a
constant flu. She also developed a mass on her right salivary gland (parotid).
She had a biopsy and removal showed pleomorphic adenoma. She also developed all
the signs and symptoms of fibromyalgia.
Her husband got sick for awhile
but he seemed to get over it rather quickly and has just been more tired than
usual. Her Daughter in law came down with an atypical flu like illness as well
around the same time and became depressed and was actually hospitalized in a
mental hospital and diagnosed with bipolar disorder and depression. Both Sylvia
and her daughter in law tested positive for the stealth virus.
Pertinent lab data reveal HHV6
titers positive at 1:640. CMV titers are positive for both IgG and IgM. EBV
Stealth Virus
Encephalitis with associated hemiparesis: * T
M, This is a 49 y/o Caucasian female who developed viral encephalitis symptoms.
Her encephalitis started with flu like symptoms associated with a rash and
urticaria. She had Nausea and quite severe vomiting. She then developed a
severe atypical headache with stiff neck and dizziness and aches and pains
typical of viremia (bones and muscle aches). The headache was unusual in that
it would hit her 2-3 times per day and the severity would be off the scale, a
15 on a scale of 1-10. The neck became stiff like she slept on it funny. She
noticed dry mouth, muscle twitching in her face and then developed numbness in
her face and tongue on the right side and left sided weakness predominantly on
the right. She also had numbness on the right. She had word finding problems
and difficulty spelling and difficulty speaking. She would get confused easily.
She had depth perception problems with difficulty going down stairs for
example, infact she even fell down. Her short term memory was shot and she
couldn’t even do serial 7’s and her regular Rhomberg test was positive.
Pertinent lab and x-ray data
revealed a normal CT scan of the head. No masses or ischemic areas were noted.
VDRL on CSF was negative. Lyme disease test was negative. Encephalitis panel
sent out was negative for St. Louis and Western Equine Encephalitis. Bacterial
antigen panel negative for S. Pneumonia, H Flu, N. Meningitides, B Strep. ANA
was neg, RA factor Neg. Measles titers showed immunity, Varicella Zoster AB
shows immunity. CMV shows IgG- 0.08 and IgM 0.38 not diagnostic. Fungal
cultures negative. Gram stain Neg. Herpes Simplex I and II IgG positive for
both and IgM is positive at low levels 0.18 and 0.49 for I and II respectively.
Epstein-Barr test show consistent for past infection VCA IgG - 1:640, IgM neg.
EBNA- >or = to 1:5. Lumbar puncture collected 6 cc of clear fluid, WBC - 1,
RBC - 150, protein - 24 and glucose 63. Her Sed rate was low at 5mm.
She had stealth viral cultures
done on her blood that showed uniformly positive Mohave effect. Since she was
one of the first patients we weren’t able to send her CSF for cultures. It is
of interest to note that her husband had about the same illness minus the
encephalitis symptoms and hemiparesis symptoms. He just had the flu like
symptoms.
Acute Stealth Virus
Encephalitis with 6th Nerve Palsy: * V
W, This 68 y/o female presented initially with severe back pain that failed
outpatient treatment. She had a history of breast cancer 14 years prior and it
was felt the pain was so severe, it might be bone metastases. She also had
polio as a child. She was completely worked up with bone scans and x-rays and
CT scans of the back and they all came back negative. She checked herself out
of the hospital somewhat early and had to be readmitted about 1 week later with
full blown encephalitis symptoms.
She presented with severe
atypical headache. She stated that the top of her head was so painful that she
just couldn’t bear it any longer. She also had severe dyplopia, back pains, leg
pains and severe feet pain. She was not in her right mind at all. She was
imagining things that weren’t there, like imaginary cigarettes, imaginary
sewing things etc. She also saw imaginary things in the hospital also. Her
illness started with a GI flu like episode with nausea vomiting and severe
fatigue. Temp was elevated to 103 for a short time. She had an LP done at the
time which was reported out as negative for bacterial infection. Her VDRL and
FTA-abs and MHA-TP and RPR were all negative as well. She had quite
significantly elevated Alk Phos over 1000 and the SGOT and SGPT were about
double normal. The patient had GI consults from 2 different gastroenterologists
and neither could find an explanation for the liver enzyme abnormalities. She
had CT scans done of the liver, which showed no abnormalities. She had a
previous cholecystectomy 2 years prior (which also didn’t show inflammation or
stones). The liver enzymes returned to normal as her neurologic symptoms
improved.
Neurology consult was obtained
and documented a mononeuropathy multiplex of the 6th and 7th nerves on the L
eye and it would not abduct laterally. She also had lapses in contact with
reality and was rather lethargic. She also completely lost her ability to
balance and in fact for a time could not even walk because of the severe
neuropathic foot pain and balance problems. Her Romberg was markedly positive.
She also had problems with memory and thinking. Her husband states her mind
wanders a lot. She also thought she had an appointment with her ophthalmologist
at the most unusual times. Physically her most important findings were numbness
in both feet and hands, low blood pressure and some orthostatic changes, severe
back pains and headaches and abdominal pains.
Repeated CT scans were negative
for any signs of brain metastasis or CVA type findings. An MRI was done and was
positive for multiple punctate lesions in the periventricular white matter.
Other pertinent lab data reveal
positive cold agglutinins, at 1:128. Rheumatoid factor was negative. CMV IgG -
Hi at 4.5, IgM was negative. ANA titers were negative. HHV-6 IgM was negative.
IgG on CSF was 17.8 normal 0-6mg/dl. IgM titer was elevated to 0.7mg/dl (nl
).)) Lyme disease antibodies were negative. Hepatitis A, B, C, titers were all
negative. Mycobacteria cultures were negative. Serum protein electrophoresis
was negative for florescent antibodies to St Louis encephalitis and Western
Equine encephalitis. No evidence of recent or previous infection. HIV antibody
test was negative as well.
Viral cultures of the blood were
markedly positive for the Mohave Stealth virus. She had an LP done which was
likewise markedly positive for the virus growth.
As an addendum: This lady was seen and examined by the state
health department epidemiologist Bob England MD. She was also examined by Dr.
Gordon Parish of Scotland, an expert in Epidemic Neuromyasthenia, he felt she
was a good example of the disease. Dr. Jay Goldstein MD and Dr. W. John Martin
also examined her.
Stealth Virus Infection
causing ADD and learning disability: * R
H: This is a young 10 year old boy who developed flu like symptoms in March of
1996. This boy had to be hospitalized 11 times in the one year. He had
intractable nausea, vomiting diarrhea, dehydration headaches, dizziness and
balance problems. The last hospitalization, he was unable to walk due to
equilibrium problems. He has had elevated temperatures with delirium. He would
talk about things that didn’t make sense, like there were 2,000 rocks coming
after him and other nonsense type things. He has had some unusual twitching and
jerking while resting but has never lost consciousness.
It is important to note that
prior to being ill, he was doing fine in school and was even on the honor roll
at times. He was at grade level and getting along well. Now after his illness
his concentration and focus has dropped considerably and he has had to go into
special education classes. He was tested at the beginning of the year and he is
at the 3rd grade level when he should be in the 5th grade. Any type of physical
exertion will cause him to flair up and get very tired and ill. He has some
difficulty sleeping due to the twitching and he still gets headaches especially
after activity. It is interesting to note that his illness seems to wax and
wane on a regular basis.
He has been worked up by Phoenix
Children’s Hospital in March of 1997 and they found an enlarged liver, and
spleen and positive Epstein-Barr antibody titers. VCA-IgG 1.03 and VCA-IgM 2.95
H. He was found to have a small hyperintense lesion in the subcortical white
mater on the right temporal area on MRI which was interpreted to be a cyst. A
Lumbar puncture was done and interpreted as normal even though it had 5
mononuclear cells/hpf and 83% lymphs, 17% mono’s, 1 RBC. Glucose 70 and protein
30 both normal. Bacterial and fungal cultures were both negative. Stealth virus
cultures were done on the blood and CSF and came out uniformly positive using
tissue culture methods. His peripheral WBC’s were normal at 9.3 and he had 19%
neutrophils and 79% lymphs, 2+ atypical lymphocytes. Sed rate 21, ANA neg, CRP
normal, Pyruvate normal, serum amino acid screen normal, urine amino acid
screen normal. SMAK 20 showed slight liver enzyme elevation, Alk phos. 178, AST
- 58, LDH 387 and protein and albumen both were slightly low. His health has
gradually improved but he is still learning disabled and in special education
classes.
============================================
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Since the 1980’s ME has exploded into a worldwide
epidemic
Efforts of
patients and Drs Cheney, Peterson and Komaroff brought attention to the 1984
outbreak at Lake Tahoe
Major Report on the Lake Tahoe Epidemic can be seen here; http://www.oocities.org/tcjrme/fundamentals8.html
Dr Ryll on ME, Causes and 1970’s California
Outbreak, see; http://www.oocities.org/tcjrme/recommend23.html
Report on Gulf
veterans and the Huge Military ME Outbreak see; http://www.oocities.org/tcjrme/fundamentals14.html
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Is ME a variant of
Poliomyelitis? The similarities Examined
“Beginning in Los
Angeles in 1934 and continuing for >20 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
ME. Like poliomyelitis, initial
symptoms of ME included headache, neck pain, low-grade fever, and myalgia that
were often followed by paresis.
Irritability and anxiety, symptoms typical of the encephalitis accompanying
bulbar polio, and even a few cases of post-acute parkinsonism were seen.”
“These reports (about late onset Polio) are reminiscent of the
symptoms associated with nearly 2 dozen outbreaks during this century of
Myalgic Encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS), conditions
that can be related historically, clinically, anatomically, or physiologically
to poliovirus infections.”
THE AMERICAN JOURNAL OF MEDICINE
28 Sept. 1998;
105(3A):66S
See this very important study; http://www.oocities.org/tcjrme/fundamentals11.html
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Protect
Yourself - Learn about ME - Educate your doctors - Alert the Public
#####################################################################
Myalgic Encephalomyelitis:
A Record of
Epidemics
Throughout
its history, ME has been a chronicle of epidemic outbreaks. ME does occur in
epidemics, this fundamental aspect is essential. This fact conveys, among other things, the infectious and
contagious nature of our disease. These
characteristics of our disease are strictly avoided by the government health
agencies. It could be said that a
strategic aspect of the health agency policies has been to conceal the history
of ME.
An important chapter in the
Encyclopaedia of Myalgic Encephalomyelitis contains a very fundamental
disclosure of ME by documenting the outbreaks from 1934 to 1990. This chapter is the result of work carried
out over many years by Drs. Acheson, Henderson, Shelokov and Parish. We are profoundly grateful to these doctors
and their vigilance over the years to evaluate and classify of these outbreaks.
1934 USA
Los
Angeles City and California State
1936 USA
Fond-du-Lac,
Wisconsin
1937 Switzerland Erstfeld
Switzerland Frohburg Hospital, St. Gallen
1939 England Harefield Sanatorium, Middlesex
Switzerland Degersheim, St. Gallen
1945 USA
University
Hospital of Pennsylvania
1946 Iceland Iceland
1948 Iceland North Coast Towns
1949 Australia Adelaide, South Australia
1950 USA St
Joseph Infirmary, Louisville, Kentucky
USA
Upper New York
State
1952 England Middlesex Hospital Nurse’s
Home, London
Denmark
Copenhagen
USA Lakeland,
Florida
1953 England Whitley Hospital, Coventry & District
USA
Chestnut Lodge
Hospital, Rockville, Maryland
Denmark
Jutland, Denmark
1954 USA Tallahassee,
Florida
USA
Seward, Alaska
Germany
British Army, Berlin
England
Liverpool
1955 England Dalston, Cumbria
England
Royal Free Hospital,
London
Australia
Perth, Western
Australia
Wales
Gilfach Goch
South
Africa Addington Hospital,
Durban and City
Sierra
Leone Segwema
Iceland
Patreksfordur and
Thorshofn
England
N.W. London
1956 USA Ridgefield,
Connecticut
USA
Punta Gorda,
Florida
England
Newton-le-Willows,
Lancashire
USA
Pittsfield,
Williamstown, Massachusetts
England
Coventry
1957 Australia Brighton, South Australia
1958 Greece Athens
1959 England Newcastle upon Tyne
1961 USA New York State
1964 England N. W. London
USA
Franklin,
Kentucky
1965 USA Galveston County, Texas
1968 Lebanon Fraidek
1969 USA Medical Centre, State Univ of New York
1970 USA Lackland Air Force Base, Texas
England
Hospital for Sick
Children, London
1975 USA Mercy San Juan Hospital Sacramento,
California
1976 Ireland Southwest Ireland
1977 USA Dallas-Fort Worth, Texas
1979 England Southampton
1980 Scotland West Kilbridges, Ayrshire
Scotland
Helensburgh
1982 New
Zealand West Otago, Dunedin
and Hamilton
*
"From 1984 until 1992 an endemic period occurred in which an unusually
large number of clusters and epidemics of M.E./CFS have been recognized in
North America. After an apparent
initial increase in morbidity in 1983, there seemed to have appeared in late
summer of 1984 an unprecedented increase of sporadic and epidemic cases across
North America. Although certain
geographical hot spots seem to have taken up much of the medical interest, this
endemic situation probably represents an unusual and unremitting morbidity in
all areas of the United States and Canada.
Some of the clusters and epidemics are listed."
1984 USA
Incline
Village, Lake Tahoe, Nevada
USA Chapel
Hill, North Carolina
Canada
Montreal,
Quebec-Ontario
USA
Truckee,
California
1985 USA Lyndonville Epidemic, New York
USA
Yerington,
Nevada
1986 USA Placerville, California
1988 USA Sonora, California
1989 USA Roseville, California
1990 USA Elkgrove High School,
Elkgrove, California
______________________________________________________________
The complete
details and references for all these epidemics can be found in the ME
encyclopaedia published by the Nightingale Research Foundation in 1992 as “The
Clinical and Scientific Basis of Myalgic Encephalomyelitis/Chronic Fatigue
Syndrome”, Hyde, Goldstein, Levine, Editors.
Available from: http://www.nightingale.ca/nightd.html
============================================
“It is thus important that those that attempt
to define any disease or illness to have long term clinical experience with
patients with this illness. There is
simply no place for the bureaucrat in defining illness. All definition of epidemic or infectious
illness must be based upon persistent clinical examination of the afflicted
patient, an understanding and exploration of the environmental factors
producing that illness, and pathophysiological examination of tissue from those
patients. For similar reasons, I
believe that the inclusion of psychiatrists in the defining of an epidemic and
obviously disease of infectious origin, simply muddies the water for any
serious understanding of that disease.
The UK definition of CFS was developed by a panel of physicians who were
primarily psychiatrists, with few if any clinicians who had ever looked at an
epidemic of CFS. A serious attempt must
be made to look at epidemic disease as and where that disease starts. This has not been done by those who have
defined CFS in the USA nor in the United Kingdom and this factor alone is
probably the single greatest reason why we know so little about CFS today that
we did not know in 1984.”
Byron M. Hyde,
M.D.
Presented at 1998
International ME Conference, Sydney .
This article explains the epidemic history and
defines the criteria for Myalgic Encephalomyelitis and shows M.E. to be very
different from the artificial CDC concept of CFS. This outstanding commentary on M.E. and CFS is a must read for
patients and doctors. See this
important M.E. / CFS perspective page here; http://www.oocities.org/tcjrme/recommend2.html
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Since the 1980’s ME has exploded into a worldwide epidemic
Will we ever
know why?
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The
Committee for Justice
and
Recognition of Myalgic Encephalomyelitis
The Lake Tahoe Outbreak; http://www.oocities.org/tcjrme/fundamentals8.html
California Hospital Outbreak; http://www.oocities.org/tcjrme/recommend23.html
ME Outbreak in Gulf War veterans; http://www.oocities.org/tcjrme/fundamentals14.html
Similarities of ME and Poliomyelitis; http://www.oocities.org/tcjrme/fundamentals11.html
M.E. and CFS an important comparison; http://www.oocities.org/tcjrme/recommend2.html
Diagnosis, Metabolism, Neurology, Research; http://www.oocities.org/tcjrme/fundamentals.html
TCJRME
Home Page; http://www.oocities.org/tcjrme
=======================================================================
Protect
Yourself - Learn about ME - Educate your doctors -
Alert the Public =======================================================================
http://www.oocities.org/tcjrme/CurrentTopics3.html
TCJRME CT - 3
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