NYT: Chronic Fatigue Syndrome

NYT: Chronic Fatigue Syndrome

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Subject: [SpinLyme] NYT: Chronic Fatigue Syndrome

Date: May 30, 2008 5:52 PM

Um, no.
Here is how science is done:
http :// www .actionlyme.org/Pathology indices.htm

Here are all the crooks' scientifically valid biomarkers of disease:
http :// www .actionlyme.org/BIOMARKERS2.htm

No scientifically valid biomarkers of disease are ever funded in
CFIDS,
because otherwise who would the non-scientists, psychiatry, get
funding
to abuse?

Where are the scientifically valid biomarkers of everything in
the DSM-IV?

There is your main clue.

Were it not for psychiatry, CFIDS would have been resolved 30 years
ago.

The biggest clues were the data on LYMErix Disease, deliberately
ignored
or thrown out by the Yale Lyme crooks:
http :// www .actionlyme.org/rOspA LYMErix Whats bad about it.htm

Just take all psychiatric terminology out of your language and
thinking patterns, because no one is allowed to *guess* what someone
else is thinking. To do so meets the definition of DELUSIONAL.
http :// www .actionlyme.org/DIABOLICAL PERVERSION PSYCHOANALYSIS.htm

The NYTimes cannot come to grips with this because for so many
years they have been given the real data, that to now admit they
were incompetent would be to, well, act like grown ups. 'Admit they
were psychiatric Kool-Aid Addicts. 'Admit that what psychiatry gave
them was more pleasurable to them, personally, than the truth.

I did not imaginate my Lyme symptoms. I was a scientist, in my
former life. Who throws *that* away? The Pfizer stock tripled
after Viagra, remember? No one throws such a career away because
they prefer pretending they're sick, especially when they were
lifelong athletes, too:
http :// www .actionlyme.org/Sports.htm

Sorry. It just does not happen. Nobody works that hard at
a career so they can later be abused by psychiatry- WHO DO NOTHING
TO ACTUALLY HELP ANYONE, yet they're everyone's critic.


Kathleen M. Dickson
http :// www .actionlyme.org


http :// health.nytimes,com /ref/health/healthguide/esn-chronicfatigue-ess.html
Chronic Fatigue Syndrome No Longer Seen as ‘Yuppie Flu’
By DAVID TULLER
Donna Flowers was once debilitated by chronic fatigue but has tamed
her disease
with exercise and treatment.

Heidi Schumann for the New York Times.

Donna Flowers was once debilitated by chronic fatigue but has tamed
her disease
with exercise and treatment.

For decades, people suffering from chronic fatigue syndrome have
struggled to convince
doctors, employers, friends and even family members that they were not
imagining
their debilitating symptoms. Skeptics called the illness “yuppie flu”
and “shirker
syndrome.”

But the syndrome is now finally gaining some official respect. The
Centers for Disease
Control and Prevention, which in 1999 acknowledged that it had
diverted millions
of dollars allocated by Congress for chronic fatigue syndrome research
to other
programs, has released studies that linked the condition to genetic
mutations and
abnormalities in gene expression involved in key physiological
processes.

The agency has also sponsored a $6 million public awareness campaign
about the illness.
And last year, it released survey data suggesting that the prevalence
of the syndrome
is far higher than previously thought, although these findings have
stirred controversy
among patients and scientists.

Some scientists and many patients remain highly critical of the
C.D.C.’s record
on chronic fatigue syndrome. But nearly everyone now agrees that the
syndrome is
real.

“People with C.F.S. are as sick and as functionally impaired as
someone with AIDS,
with breast cancer, with chronic obstructive pulmonary disease,” said
Dr. William
Reeves, the lead expert on the illness at the disease control agency,
who helped
expose its misuse of chronic fatigue financing.

Chronic fatigue syndrome was first identified as a distinct entity in
the 1980s.
(A virtually identical illness had been identified in Britain three
decades earlier
and called myalgic encephalomyelitis.) The illness, which afflicts
more women than
men, causes overwhelming fatigue, sleep disorders and other severe
symptoms. No
consistent biomarkers have been identified and no treatments have been
approved
for addressing the underlying causes, although some medications
provide symptomatic
relief.

Patients say the word “fatigue” does not begin to describe their
condition. Donna
Flowers of Los Gatos, Calif., a physical therapist and former
professional figure
skater, said the profound exhaustion was unlike anything she had ever
experienced.

“I slept for 12 to 14 hours a day but still felt sleep-deprived,” said
Ms. Flowers,
51, who fell ill several years ago after a bout of mononucleosis. “I
had what we
call ‘brain fog.’ I couldn’t think straight, and I could barely read.
I couldn’t
get the energy to go out of the door. I thought I was doomed. I wanted
to die.”

Studies have shown that people with the syndrome experience
abnormalities in the
central and autonomic nervous systems, the immune system, cognitive
functions, the
stress response pathways and other major biological functions.
Researchers believe
the illness will ultimately prove to have multiple causes, including
genetic predisposition
and exposure to microbial agents, toxins and other physical and
emotional traumas.
Studies have linked the onset of chronic fatigue syndrome with an
acute bout of
Lyme disease, Q fever, Ross River virus, parvovirus, mononucleosis and
other infectious
diseases.

“It’s unlikely that this big cluster of people who fit the symptoms
all have the
same triggers,” said Kimberly McCleary, president of the Chronic
Fatigue and Immune
Dysfunction Syndrome Association of America, the advocacy group in
charge of the
C.D.C.-sponsored awareness campaign. “You’re looking not just at
apples and oranges
but pineapples, hot dogs and skateboards, too.”

Under the most widely used case definition, a diagnosis of chronic
fatigue syndrome
requires six months of unexplained fatigue as well as four of eight
other persistent
symptoms: impaired memory and concentration, sore throat, tender lymph
nodes, muscle
pain, joint pain, headaches, disturbed sleeping patterns and feelings
of malaise
after exertion.

The broadness of the definition has led to varying estimates of the
syndrome’s prevalence.
Based on previous surveys, the C.D.C. has estimated that more than a
million Americans
have the illness.

Last month, however, the agency reported that a randomized telephone
survey in Georgia,
using a less restrictive methodology to identify cases, found that
about one in
40 adults ages 18 to 59 met the diagnostic criteria — an estimate 6 to
10 times
higher than previously reported rates.

Many patients and researchers fear that the expanded prevalence rate
could complicate
the search for consistent findings across patient cohorts. These
critics say the
new figures are greatly inflated and include many people who are
likely to be suffering
not from chronic fatigue syndrome but from psychiatric illnesses.

“There are many, many conditions that are psychological in nature that
share symptoms
with this illness but do not share much of the underlying biology,”
said John Herd,
55, a former medical illustrator and a C.F.S. patient for two decades.

Researchers and patient advocates have faulted other aspects of the
C.D.C.’s research.

Dr. Jonathan Kerr, a microbiologist and chronic fatigue expert at St.
George’s University
of London, said the agency’s gene expression findings last year were
“rather meaningless”
because they were not confirmed through more advanced laboratory
techniques.

Kristin Loomis, executive director of the HHV-6 Foundation, a research
advocacy
group for a form of herpes virus that has been linked to C.F.S., said
studying subsets
of patients with similar profiles was more likely to generate useful
findings than
Dr. Reeves’s population-based approach.

Dr. Reeves responded that understanding of the disease and of some
newer research
technologies is still in its infancy, so methodological disagreements
were to be
expected. He defended the population-based approach as necessary for
obtaining a
broad picture and replicable results. “To me, this is the usual
scientific dialogue,”
he said.

Dr. Jose G. Montoya, a Stanford infectious disease specialist pursuing
the kind
of research favored by Ms. Loomis, caused a buzz last December when he
reported
remarkable improvement in 9 out of 12 patients given a powerful
antiviral medication,
valganciclovir. Dr. Montoya has recently completed a randomized
controlled trial
of the drug, which is approved for other uses, but the findings have
not been released.

Dr. Montoya said some cases of the syndrome were caused when an acute
infection
set off a recurrence of latent infections of Epstein Barr virus and
HHV-6, two pathogens
that most people are exposed to in childhood. Ms. Flowers, the former
figure skater,
had high levels of antibodies to both viruses and was one of Dr.
Montoya’s initial
C.F.S. patients.

Six months after starting treatment, Ms. Flowers said, she was able to
go snowboarding
and take yoga and ballet classes. “Now I pace myself, but I’m probably
75 percent
of normal,” she said.

Many patients point to another problem with chronic fatigue syndrome:
the name itself,
which they say trivializes their condition and has discouraged
researchers, drug
companies and government agencies from taking it seriously. Many
patients prefer
the older British term, myalgic encephalomyelitis, which means “muscle
pain with
inflammation of the brain and spinal cord,” or a more generic term,
myalgic encephalopathy.

“You can change people’s attributions of the seriousness of the
illness if you have
a more medical-sounding name,” said Dr. Leonard Jason, a professor of
community
psychology at DePaul University in Chicago.

Updated from an article that originally appeared in The New York Times
on July 17,
2007.

Re: NYT: Chronic Fatigue Syndrome

On Jun 1, 10:06 am, Mort Zuckerman <morph...@yahoo,com > wrote:
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>
> Subject: [SpinLyme] NYT: Chronic Fatigue Syndrome
>
> Date: May 30, 2008 5:52 PM
>
> Um, no.
> Here is how science is done: http :// www .actionlyme.org/Pathology indices.htm
>
> Here are all the crooks' scientifically valid biomarkers of disease:http://www .actionlyme.org/BIOMARKERS2.htm
>
> No scientifically valid biomarkers of disease are ever funded in
> CFIDS,
> because otherwise who would the non-scientists, psychiatry, get
> funding
> to abuse?
>
> Where are the scientifically valid biomarkers of everything in
> the DSM-IV?
>
> There is your main clue.
>
> Were it not for psychiatry, CFIDS would have been resolved 30 years
> ago.
>
> The biggest clues were the data on LYMErix Disease, deliberately
> ignored
> or thrown out by the Yale Lyme crooks: http :// www .actionlyme.org/rOspA LYMErix Whats bad about it.htm
>
> Just take all psychiatric terminology out of your language and
> thinking patterns, because no one is allowed to *guess* what someone
> else is thinking. To do so meets the definition of DELUSIONAL. http :// www .actionlyme.org/DIABOLICAL PERVERSION PSYCHOANALYSIS.htm
>
> The NYTimes cannot come to grips with this because for so many
> years they have been given the real data, that to now admit they
> were incompetent would be to, well, act like grown ups. 'Admit they
> were psychiatric Kool-Aid Addicts. 'Admit that what psychiatry gave
> them was more pleasurable to them, personally, than the truth.
>
> I did not imaginate my Lyme symptoms. I was a scientist, in my
> former life. Who throws *that* away? The Pfizer stock tripled
> after Viagra, remember? No one throws such a career away because
> they prefer pretending they're sick, especially when they were
> lifelong athletes, too: http :// www .actionlyme.org/Sports.htm
>
> Sorry. It just does not happen. Nobody works that hard at
> a career so they can later be abused by psychiatry- WHO DO NOTHING
> TO ACTUALLY HELP ANYONE, yet they're everyone's critic.
>
> Kathleen M. Dickson http :// www .actionlyme.org
>
> http :// health.nytimes,com /ref/health/healthguide/esn-chronicfatigue-e...
> Chronic Fatigue Syndrome No Longer Seen as ‘Yuppie Flu’
> By DAVID TULLER
> Donna Flowers was once debilitated by chronic fatigue but has tamed
> her disease
> with exercise and treatment.
>
> Heidi Schumann for the New York Times.
>
> Donna Flowers was once debilitated by chronic fatigue but has tamed
> her disease
> with exercise and treatment.
>
> For decades, people suffering from chronic fatigue syndrome have
> struggled to convince
> doctors, employers, friends and even family members that they were not
> imagining
> their debilitating symptoms. Skeptics called the illness “yuppie flu”
> and “shirker
> syndrome.”
>
> But the syndrome is now finally gaining some official respect. The
> Centers for Disease
> Control and Prevention, which in 1999 acknowledged that it had
> diverted millions
> of dollars allocated by Congress for chronic fatigue syndrome research
> to other
> programs, has released studies that linked the condition to genetic
> mutations and
> abnormalities in gene expression involved in key physiological
> processes.
>
> The agency has also sponsored a $6 million public awareness campaign
> about the illness.
> And last year, it released survey data suggesting that the prevalence
> of the syndrome
> is far higher than previously thought, although these findings have
> stirred controversy
> among patients and scientists.
>
> Some scientists and many patients remain highly critical of the
> C.D.C.’s record
> on chronic fatigue syndrome. But nearly everyone now agrees that the
> syndrome is
> real.
>
> “People with C.F.S. are as sick and as functionally impaired as
> someone with AIDS,
> with breast cancer, with chronic obstructive pulmonary disease,” said
> Dr. William
> Reeves, the lead expert on the illness at the disease control agency,
> who helped
> expose its misuse of chronic fatigue financing.
>
> Chronic fatigue syndrome was first identified as a distinct entity in
> the 1980s.
> (A virtually identical illness had been identified in Britain three
> decades earlier
> and called myalgic encephalomyelitis.) The illness, which afflicts
> more women than
> men, causes overwhelming fatigue, sleep disorders and other severe
> symptoms. No
> consistent biomarkers have been identified and no treatments have been
> approved
> for addressing the underlying causes, although some medications
> provide symptomatic
> relief.
>
> Patients say the word “fatigue” does not begin to describe their
> condition. Donna
> Flowers of Los Gatos, Calif., a physical therapist and former
> professional figure
> skater, said the profound exhaustion was unlike anything she had ever
> experienced.
>
> “I slept for 12 to 14 hours a day but still felt sleep-deprived,” said
> Ms. Flowers,
> 51, who fell ill several years ago after a bout of mononucleosis. “I
> had what we
> call ‘brain fog.’ I couldn’t think straight, and I could barely read.
> I couldn’t
> get the energy to go out of the door. I thought I was doomed. I wanted
> to die.”
>
> Studies have shown that people with the syndrome experience
> abnormalities in the
> central and autonomic nervous systems, the immune system, cognitive
> functions, the
> stress response pathways and other major biological functions.
> Researchers believe
> the illness will ultimately prove to have multiple causes, including
> genetic predisposition
> and exposure to microbial agents, toxins and other physical and
> emotional traumas.
> Studies have linked the onset of chronic fatigue syndrome with an
> acute bout of
> Lyme disease, Q fever, Ross River virus, parvovirus, mononucleosis and
> other infectious
> diseases.
>
> “It’s unlikely that this big cluster of people who fit the symptoms
> all have the
> same triggers,” said Kimberly McCleary, president of the Chronic
> Fatigue and Immune
> Dysfunction Syndrome Association of America, the advocacy group in
> charge of the
> C.D.C.-sponsored awareness campaign. “You’re looking not just at
> apples and oranges
> but pineapples, hot dogs and skateboards, too.”
>
> Under the most widely used case definition, a diagnosis of chronic
> fatigue syndrome
> requires six months of unexplained fatigue as well as four of eight
> other persistent
> symptoms: impaired memory and concentration, sore throat, tender lymph
> nodes, muscle
> pain, joint pain, headaches, disturbed sleeping patterns and feelings
> of malaise
> after exertion.
>
> The broadness of the definition has led to varying estimates of the
> syndrome’s prevalence.
> Based on previous surveys, the C.D.C. has estimated that more than a
> million Americans
> have the illness.
>
> Last month, however, the agency reported that a randomized telephone
> survey in Georgia,
> using a less restrictive methodology to identify cases, found that
> about one in
> 40 adults ages 18 to 59 met the diagnostic criteria — an estimate 6 to
> 10 times
> higher than previously reported rates.
>
> Many patients and researchers fear that the expanded prevalence rate
> could complicate
> the search for consistent findings across patient cohorts. These
> critics say the
> new figures are greatly inflated and include many people who are
> likely to be suffering
> not from chronic fatigue syndrome but from psychiatric illnesses.
>
> “There are many, many conditions that are psychological in nature that
> share symptoms
> with this illness but do not share much of the underlying biology,”
> said John Herd,
> 55, a former medical illustrator and a C.F.S. patient for two decades.
>
> Researchers and patient advocates have faulted other aspects of the
> C.D.C.’s research.
>
> Dr. Jonathan Kerr, a microbiologist and chronic fatigue expert at St.
> George’s University
> of London, said the agency’s gene expression findings last year were
> “rather meaningless”
> because they were not confirmed through more advanced laboratory
> techniques.
>
> Kristin Loomis, executive director of the HHV-6 Foundation, a research
> advocacy
> group for a form of herpes virus that has been linked to C.F.S., said
> studying subsets
> of patients with similar profiles was more likely to generate useful
> findings than
> Dr. Reeves’s population-based approach.
>
> Dr. Reeves responded that understanding of the disease and of some
> newer research
> technologies is still in its infancy, so methodological disagreements
> were to be
> expected. He defended the population-based approach as necessary for
> obtaining a
> broad picture and replicable results. “To me, this is the usual
> scientific dialogue,”
> he said.
>
> Dr. Jose G. Montoya, a Stanford infectious disease specialist pursuing
> the kind
> of research favored by Ms. Loomis, caused a buzz last December when he
> reported
> remarkable improvement in 9 out of 12 patients given a powerful
> antiviral medication,
> valganciclovir. Dr. Montoya has recently completed a randomized
> controlled trial
> of the drug, which is approved for other uses, but the findings have
> not been released.
>
> Dr. Montoya said some cases of the syndrome were caused when an acute
> infection
> set off a recurrence of latent infections of Epstein Barr virus and
> HHV-6, two pathogens
> that most people are exposed to in childhood. Ms. Flowers, the former
> figure skater,
> had high levels of antibodies to both viruses and was one of Dr.
> Montoya’s initial
> C.F.S. patients.
>
> Six months after starting treatment, Ms. Flowers said, she was able to
> go snowboarding
> and take yoga and ballet classes. “Now I pace myself, but I’m probably
> 75 percent
> of normal,” she said.
>
> Many patients point to another problem with chronic fatigue syndrome:
> the name itself,
> which they say trivializes their condition and has discouraged
> researchers, drug
> companies and government agencies from taking it seriously. Many
> patients prefer
> the older British term, myalgic encephalomyelitis, which means “muscle
> pain with
> inflammation of the brain and spinal cord,” or a more generic term,
> myalgic encephalopathy.
>
> “You can change people’s attributions of the seriousness of the
> illness if you have
> a more medical-sounding name,” said Dr. Leonard Jason, a professor of
> community
> psychology at DePaul University in Chicago.
>
> Updated from an article that originally appeared in The New York Times
> on July 17,
> 2007.

Were it not for psychiatry, CFIDS would have been resolved 30 years
ago.

I agree, the arrogance of a few has caused suffering to a lot.