Thursday, March 13, 2014

CFS or depression? Dr. Jason's differentiation

Be Well

Chronic Fatigue Controversy
by David Tuller,  |  March 12, 2014

Chronic fatigue syndrome has devastated the lives of hundreds of
thousands of Americans. Everything about the condition--what to call
it, how to identify and define it, what treatment is indicated--has
been subject to dispute. In fact, the patient community has long been
at odds with health officials, who have frequently framed the illness
as largely psychosomatic. Yet abundant evidence has linked chronic
fatigue syndrome to neurological, immunological and hormonal

Now a government-sponsored panel is seeking to develop a new set of
diagnostic criteria for the disease. The Department of Health and
Human Services commissioned the report last September from the
Institute of Medicine (IOM), an independent organization whose
well-regarded reports frequently inform government policy about
controversial and complex issues.

But the panel, which recently held its first and perhaps only public
hearing, is facing strong opposition from top researchers and doctors
as well as many patients. They are upset because eight out of 15 panel
members have no expertise in the illness. (In most circumstances, the
diagnostic criteria for a condition are developed by the field's top
clinicians and researchers.) The critics fear that the panel will once
again approach their illness from a psychiatric perspective, leading
to misdiagnoses and to treatments that are effective for people
suffering from depression and other mental health illnesses but not
for those with chronic fatigue syndrome.

A bit of context: The word "fatigue"--as everyone who knows anything
about the illness agrees--trivializes the experience of patients, who
experience a profound exhaustion. Both experts and patients prefer a
more scientific name: myalgic encephalomyelitis, which means "painful
inflammation of the brain and spinal cord." (In fact, the illness is
now frequently referred to by the acronym ME/CFS; the IOM panel is
also supposed to render a verdict on the name when it issues its
findings early next year.)

No known cause of ME/CFS has been identified, and no medication is
approved for treatment of the underlying disorder. Experts now believe
that something, in most cases an acute viral infection, triggers an
aggressive immune response that never shuts itself off. Because the
illness is currently diagnosed through symptoms that can resemble
cases of depression, distinguishing between the two can be difficult.

Leonard Jason, Ph.D., a professor of psychology at DePaul University and a respected ME/CFS researcher, offers perhaps the simplest approach to the task: He asks patients what plans they would make if their condition improved. A patient experiencing a depressive disorder, he explained, would likely have a hard time answering. "But someone with ME/CFS would probably begin making lists of all the things that they wanted to do," he said in a recent interview with BuzzFeed about the issue.

One significant stumbling block for research and treatment has been
the lack of a single set of agreed-upon criteria. Scientists in the
U.S. and Europe have developed half a dozen or more case definitions
over the years, for both research and clinical care. A 1994 definition
developed by the Centers for Disease Control is considered
out-of-date; it requires six months of fatigue and four out of a
grab-bag of eight of the common symptoms.

Many patients, doctors and researchers prefer a 2003 version developed
by leading clinicians and scientists. Unlike the Centers for Disease
Control and Prevention (CDC) definition, this version requires the
presence of exhaustion but also of an unusual symptom called
"post-exertional malaise"--poor recovery of energy after modest or
minimal physical effort. Many patients and experts consider this, not
fatigue per se, to be the cardinal symptom of the illness. The 2003
definition also requires the presence of sleep disturbances and
cognitive dysfunctions. The CDC definition mentions but does not
require these symptoms.

Despite the IOM's reputation, patients and experts are concerned not
only about who is on the panel but also about their charge. The
government has requested that the panel consider a range of existing
definitions, including some guidelines that appear to identify a
population disproportionately suffering from depression. Although
dozens of experts signed a letter urging the Department of Health and
Human Services to adopt the 2003 criteria as the basis for further
refinements and abandon the IOM study, Secretary Kathleen Sebelius
flatly rejected the request.

The IOM, which is supposed to deliver its report early next year, is
receiving approximately one million dollars for its work. Given that
annual spending by the National Institutes of Health on ME/CFS is only
five million dollars--much less than many illnesses that affect far
fewer people--the experts noted in their letter that it made more sense
to spend available funds on researching the pathogenesis of the
disease rather than on new diagnostic guidelines. The experts and
patients fear, understandably, that if the IOM panel adopts a
fatigue-oriented definition that does not prioritize other symptoms,
their efforts to gain respect and credibility for ME/CFS will have
suffered a crippling blow.

5 Things I Didn't Know About Health Care (Until I Got Sick)

"Sick people with potentially curable illnesses are shunted around between separate specialists who don't pay attention to anything except the body part they've been trained to focus on, a problem known as care fragmentation "
"When it comes to unexplained symptoms, doctors have never been very good at saying, "Wow, I really don't know what is causing this problem. Perhaps we'll know in the future, when we have flying cars and such." Instead, patients are often told that they're hypochondriacs, mentally ill, or just plain faking it to get attention. This is still happening today, with little-understood conditions like fibromyalgia and chronic fatigue. And don't think you can avoid this by developing a relatively well-known illness: You can have a medical condition that's been in the scientific literature for decades, but if your doctors were asleep in class that day, they'll be happy to call you a hypochondriac, too. Several doctors did it to me."
"maybe medical science could notice this historical trend of misdiagnosing legitimate illnesses as hysterical lies, and admit that if a bunch of people all start having the same physical symptoms, maybe they're not all just anxious or trying to get attention? Because trust me, there are many ways to get attention, and any of them would be more fun"

Read more:

Monday, March 10, 2014

Help Simmaron Research every time you shop

Help Simmaron Research every time you shop:


Plague: The Book ... now Plague: The Website

On July 22, 2009, a special meeting was held with twenty-four leading scientists at the National Institutes of Health to discuss early findings that a newly discovered retrovirus was linked to chronic fatigue syndrome (CFS), prostate cancer, lymphoma, and eventually neurodevelopmental disorders in children.
When Dr. Judy Mikovits finished her presentation the room was silent for a moment, then one of the scientists said, "Oh my God!" The resulting investigation would be like no other in science.

On this journey Dr. Mikovits would face the scientific prejudices against CFS, wander into  the minefield that is autism, and through it all struggle to maintain her faith in God, the American justice system and the profession to which she had dedicated her life. This is a story for anybody interested in the promise and peril of science at the very highest levels in our country.

REVIEW: "This story raises questions we all need to be asking about our science, our scientists, our politicians, and our society. PLAGUE doesn't just identify a retrovirus, it points to a weakness in our culture.​"

Plague: The Book

Announcing the launch of a new website for the book, "PLAGUE: One Scientist's Intrepid Search for the Truth about Human Retroviruses and Chronic Fatigue Syndrome, Autism, and Other Diseases". It's a must read of events that would result in the writing of PLAGUE "The Book". There will be much more coming to the website soon!

The book is being released by Skyhorse Publishing on May 6, 2014. The authors hope the story will enlighten, challenge, and bring clarity to the efforts of Dr. Judy Mikovits, as well as lead to answers for the millions who suffer from these chronic diseases. Please visit the website at: