Thursday, February 27, 2014

California Polio-Like Illnesses Not Linked, Officials Say

California Polio-Like Illnesses Not Linked, Officials Say

A medical mystery is deepening in California, where state health officials
now say reports of polio-like illnesses that have left as many as 25
children with paralyzed limbs don't appear to be connected.

It's not clear what may be behind the rash of acute infections first
reported Sunday by researchers in a presentation for the American Academy of
Neurology's annual meeting. Tests of 15 of 20 cases submitted by doctors and
researchers have come up empty, according to Dr. Gil Chavez, state
epidemiologist for the California Department of Public Health.

"Thus far, the department has not identified any common causes to suggest
that the cases are linked," he said in a statement. "The investigation is

But that only heightened the resolve of the parents of 4-year-old Sofia
Jarvis, who was the first to be identified as part of the series of
unexplained cases of sudden paralysis in kids ages 2 to 16.

She was barely a toddler two years ago when she was stricken with flu-like
symptoms and trouble breathing — and later realized she couldn't move her
left arm. An MRI later confirmed that she had a spinal cord lesion that was
causing paralysis.

...  "We're seeing them throughout California," he said. "The farthest north is
in the Bay Area and the farthest south is in San Diego."

Van Haren and colleagues from the University of California, San Francisco,
suspect that the illnesses may be caused by a virus, possibly a type of
enterovirus, the same family of virses as poliovirus.

Two of the children in the early reports showed signs of infection with
human enterovirus-68, which has previously been associated with polio-like
symptoms. HEV-68 is a rare form of very common enteroviruses, which cause
between 10 million and 15 million infections in the U.S. every year,
according to the Centers for Disease Control and Prevention.

* * *
The problem with testing for viruses is that you can only test for the viruses that have a test.  All my testing in 1987 came up clean.  That persistent fever told us that there WAS something going on, probably a virus, but they didn't yet have a test for whatever virus it was.
I now have an "off the charts" C-Reactive Protein test which verifies some sort of infection or inflammation.  That still doesn't mean there's a test specifically for what I have, only that we have confirmation that it is not "all in my head", and at the time that test was done, whatever was going on in my body was severe -- this was not just a minor problem.
Dr. Bruno notes that the polio vaccine covers only 3 of the 72 known strains of enterovirus. HEV-68 is not one of the ones that is covered.

Wednesday, February 26, 2014

Memory, Depression, and Neurobiology

Psychosocial factors involved in memory and cognitive failures in
people with myalgic encephalomyelitis/chronic fatigue syndrome
Elizabeth A Attree,1 Megan A Arroll,1 Christine P Dancey,1 Charlene
Griffith,1 Amolak S Bansal1,2

Published Date February 2014 Volume 2014:7 Pages 67 - 76

Received: 28 June 2013
Accepted:25 October 2013
Published:25 February 2014

1Chronic Illness Research Team, School of Psychology, University of
East London, London, UK; 2Department of Immunology and the Sutton CFS
Service, St Helier Hospital, Carshalton, UK

Background: Myalgic encephalomyelitis/chronic fatigue syndrome
(ME/CFS) is characterized by persistent emotional, mental, and
physical fatigue accompanied by a range of neurological, autonomic,
neuroendocrine, immune, and sleep problems. Research has shown that
psychosocial factors such as anxiety and depression as well as the
symptoms of the illness, have a significant impact on the quality of
life of people with ME/CFS. In addition, individuals may suffer from
deficits in memory and concentration. This study set out to explore
the relationships between variables which have been found to
contribute to cognitive performance, as measured by prospective and
retrospective memory, and cognitive failures.

Methods: Eighty-seven people with ME/CFS answered questionnaires
measuring fatigue, depression, anxiety, social support, and general
self-efficacy. These were used in a correlational design (multiple
regression) to predict cognitive function (self-ratings on prospective
and retrospective memory), and cognitive failures.

Results: Our study found that fatigue, depression, and general
self-efficacy were directly associated with cognitive failures and
retrospective (but not prospective) memory.

Conclusion: Although it was not possible in this study to determine
the cause of the deficits, the literature in this area leads us to
suggest that although the pathophysiological mechanisms of ME/CFS are
unclear, abnormalities in the immune system, including proinflammatory
cytokines, can lead to significant impairments in cognition. We
suggest that fatigue and depression may be a result of the
neurobiological effects of ME/CFS
and in addition, that the
neurobiological effects of the illness may give rise to both fatigue
and cognitive deficits independently.

More on Justina Pelletier case

Mom of Sick Connecticut Teen 'Collapses' in Court After Judge Sends
Kid to Foster Care
Feb. 25, 2014

Lou and Linda Pelletier, of West Hartford, Conn., have been fighting
for their daughter who they say has mitochondrial disease, a rare
genetic disorder with physical symptoms that can affect every part of
the body. ...

... "If she had somatoform disorder, then her condition would have
improved," he said. "She's not gotten any better."

... Justina was diagnosed with somatoform pain disorder, a psychiatric
condition when a person experiences physical pain for which no known
medical explanation can be found, according to her family. The case
highlights a growing concern among those with rare diseases and
autoimmune disorders that physical symptoms that cannot be explained
will be dismissed by doctors as psychosomatic.

... Mitochondrial disease affects the body's ability to make energy, according to Dr. Richard Boles, medical director of Courtagen Life
Sciences, a genetic testing company in Massachusetts, and a practicing
physician in Los Angeles.

"The symptoms can affect any part of the body," said Boles, who did
not treat Justina. "It can cause just about anything. People with
mitochondrial disease can have diabetes, autism or other types of
retardation, seizure disorders or migraine, chronic fatigue or
intestinal failure."

"People with mitochondrial disease have a lot of pain," he told earlier this month. "Normal sensations are amplified by the nervous system. They are not making it up. The idea of somatoform is you are making it up to serve some need. But they are having real pain."

... "The system has failed," said Justina's father Pelletier. "I am battling the medical world that thinks it knows everything."
* * *
As one of my teachers warned us, "a little knowledge is a dangerous thing."  Doctors think they know everything.  Generalists make wrong diagnoses instead of referring the patient to a specialist, and when the wrong treatment, for something they don't even have, causes the patient to get worse, the doctor verbally abuses the patient for "not wanting to get well" rather than acknowledging that the problem may be the wrong diagnosis/wrong treatment on the doctor's part, rather than willful disobedience on the patient's part.
I've been told that my symptoms are "medically impossible" -- just because it's not like 99% of other diseases doesn't mean it's impossible.  It means you're so focused on "thinking horses" that the concept of the existence of a zebra doesn't enter your mind.  Zebras, unlike unicorns, really do exist, and one of my doctors, when challenged whether there are any medical conditions where exercise is contra-indicated, quickly thought of one but then cautioned "you don't have that."  I know I don't have that condition, but it got him to think outside the box where exercise cures everything, to admit that what I was telling him about exercise making me worse is NOT impossible.  Rare, but not entirely impossible.

They Call it a Complex, Multi-System Disease for a Reason

Justina Pelletier Placed in Foster Care

Outrage as Justina Pelletier Placed in Foster Care [Video]
Added by Penny Swift on February 26, 2014.

There were scenes of outrage outside a Boston courthouse on Monday
after a judge ruled that critically ill Justina Pelletier be placed in
foster care for the next three weeks...

Several years ago Justina Pelletier, 15, was diagnosed with the very
rare mitochondrial disease, which, like myalgic encephalomyelitis (ME)
and chronic fatigue syndrome (CFS) has no clear medical explanation.

... Early February of last year, Justina got flu and was admitted (by her
parents) to the Boston Children's Hospital to be treated by the
gastroenterologist who had attended her for years, but had switched to
Boston from Tufts. Three days later, without consultation with the
gastroenterologist, or doctors at Tufts, she was re-diagnosed by the
hospital as having somatoform disorder, a mental condition ...

A second case relating to a gag order applied to the Justina Pelletier
case in November of last year prohibits anyone from discussing the
case with the media. ...

Defying the order, Lou Pelletier agreed to be interviewed by Megyn
Kelly on Fox News last week Thursday. He said his daughter had been
tortured physically and medically and claimed that all her medications
had been ignored. He said she was "at breaking point" and he could not
"stand back any more and allow this to happen." Pelletier said Justina
was now paralyzed below the hips and "in pain 24 hours a day." Every
time he sees her, his "knees buckle" and he cries, he said.

... He claimed that the new diagnosis was done without consultation with
Justina's doctors, and "without looking at medical records."
Somatoform takes months and years to diagnose, he said, yet the
hospital doctors "came up with the diagnosis" within three days...
* * *
We hear these horror stories all the time -- patients with medical illness being changed to a psychiatric diagnosis -- and nothing is done to stop it.

Monday, February 24, 2014

Stanford physician leading efforts to track emerging polio-like illness

"Although poliovirus has been eradicated from most of the globe, other viruses can also injure the spine, leading to a polio-like syndrome," said case report author Keith Van Haren, MD, with Stanford University in Palo Alto, Calif. and a member of the American Academy of Neurology. "In the past decade, newly identified strains of enterovirus have been linked to polio-like outbreaks among children in Asia and Australia. These five new cases highlight the possibility of an emerging infectious polio-like syndrome in California."
"There's a knee-jerk reaction to just call it transverse myelitis. This is something else, and it's quite bad."
* * *
A newer and worse version of CFS?

See also: