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#1 2009-10-13 3:54 am

Bat
Flawless Cowboy
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From: Björk, Björk
Registered: 2001-05-14
Posts: 28541

A world inverting, a Vietnam winding down- the 4th human retrovirus

Normally this would go in Unplugged, but it's a story so full of blatant careerism, wrongheadedness, various kinds of corruption, tangled skeins of moneyed interests, government malfeasance, frequently misplaced trust in high places and more, that even now, as the shock starts to wear off and the urge to call a few remaining close friends in the dead of night abates... it still seems to belong here. If it seems otherwise at first, I beg your indulgence- some reading should dispel that thought. Truth will out, eventually- may I live to see the full story.

It's almost Tolkienesque- CDC increasingly and openly going back down the wrong road they once trod and never really strayed from, NIH appearing to continue doing little, FDA continuing to delay and likely rule against what should have been approved 20 years ago; more- the Ring seems poised to go into the Fire. The Eye in the Tower has by now seen its peril, pierced all its self-made shadows and must even now be bending all its efforts to avert the near-inevitable; but I think it will fail. A day I had given up on seeing has come; now perhaps real science will begin to take hold, making inroads on the FUD so long spread around and about this. Decades of suffering & slowly-progressive disability, an adult lifetime and more, beginning to end.

It has defied little-publicized scandal, Inspectors General, FOIA requests... it be time for the suffering to abate, the suicides to slow, then stop. Surely help will gear up, long tho it may take to arrive in force.

Sturner, unfurl the colors. Cavalry, mount up- the nick of time is at hand.

OUR VIETNAM WAR ENDED TODAY
COPYRIGHT (C) 2009 BY HILLARY JOHNSON; ALL RIGHTS RESERVED
October 8, 2009

Our Vietnam war is over. Our Guantanamo has closed. The world has flipped. It took one human generation, but it turned right side up today.

If you know what happened this afternoon, read on. If you don’t know, here is the link. Then, if you want to talk about it—if you are not too busy crying or screaming or calling your best friend or praying to your God or simply struck numb—come back here.

Published Online October 8, 2009
Science DOI: 10.1126/science.1179052
Science Express Index

Reports
Submitted on July 14, 2009
Accepted on August 31, 2009

Detection of an Infectious Retrovirus, XMRV, in Blood Cells of Patients with Chronic Fatigue Syndrome
Vincent C. Lombardi 1, Francis W. Ruscetti 2, Jaydip Das Gupta 3, Max A. Pfost 1, Kathryn S. Hagen 1, Daniel L. Peterson 1, Sandra K. Ruscetti 4, Rachel K. Bagni 5, Cari Petrow-Sadowski 6, Bert Gold 2, Michael Dean 2, Robert H. Silverman 3, Judy A. Mikovits 1*
1 Whittemore Peterson Institute, Reno, NV 89557, USA.
2 Laboratory of Experimental Immunology, National Cancer Institute-Frederick, Frederick, MD 21701, USA.
3 Department of Cancer Biology, The Lerner Research Institute, The Cleveland Clinic Foundation, Cleveland, OH 44106, USA.
4 Laboratory of Cancer Prevention, National Cancer Institute-Frederick, Frederick, MD 21701, USA.
5 Advanced Technology Program, National Cancer Institute-Frederick, Frederick, MD 21701, USA.
6 Basic Research Program, Scientific Applications International Corporation, National Cancer Institute-Frederick, Frederick, MD 21701, USA.

* To whom correspondence should be addressed.
Judy A. Mikovits , E-mail: judym@wpinstitute.org

These authors contributed equally to this work.

Chronic fatigue syndrome (CFS) is a debilitating disease of unknown etiology that is estimated to affect 17 million people worldwide. Studying peripheral blood mononuclear cells (PBMCs) from CFS patients, we identified DNA from a human gammaretrovirus, xenotropic murine leukemia virus-related virus (XMRV), in 68 of 101 patients (67%) compared to 8 of 218 (3.7%) healthy controls. Cell culture experiments revealed that patient-derived XMRV is infectious and that both cell-associated and cell-free transmission of the virus are possible. Secondary viral infections were established in uninfected primary lymphocytes and indicator cell lines following exposure to activated PBMCs, B cells, T cells, or plasma derived from CFS patients. These findings raise the possibility that XMRV may be a contributing factor in the pathogenesis of CFS.

http://www.sciencemag.org/cgi/content/abstract/1179052

(If you missed it, this is partly from the National Cancer Institute and the prestigious Cleveland Clinic- one of three in the US roughly on par with the Mayo- and Peterson refers to Daniel Peterson, one of several on site in the 'original' '84 outbreak in Incline Village, Nevada, which the press quickly dubbed the 'yuppie flu'- not the first, by no means the last insult/injury sufferers would have to bear).
=======================

A nova has appeared in the [heavens]. We knew it would appear some day—but in our lifetimes? Many of us, having given up on recovery, had merely hoped we might live long enough to understand the scientific basis of our suffering. Thousands, perhaps hundreds of thousands, of us didn’t make it, or simply gave up. Between the time Dr. Judy Mikovits of the Whittemore Peterson Institute and her collaborators at the National Cancer Institute and the Cleveland Clinic submitted their paper to Science and today, we know at least one woman, the British citizen Pamela Weston, chose assisted suicide rather than go on; in the note she left behind she wrote that she hoped her choice would, in some part, move the UK medical research forward. Might Weston have hung on had she known about XMRV? We grieve for those who couldn't wait, couldn't hang on, and acknowledge their bravery. For the rest of us, this is a day to celebrate.

We don’t know for certain what is going to happen next. We only know—we must understand now—that some great piece of our suffering has ended.

All those petitions we signed in the tens of thousands over the decades? All the hope that was bound up in those petitions, our pleas for mercy? Just part of our suffering, part of the trail we had to walk, like refugees, through our private war zone. Only we knew what it was like.

This nova will redefine the relationships among the stars. Astronomers’ maps are being redrawn as I write this. From the doctors’ we visit, to the insurance companies that have mercilessly controlled our access to medical care and disability support, to research laboratories at major universities and in the laboratories of federal health agencies—change is coming.

A generation of quacks and sub-par investigators will be in retreat, as well. Let them pursue their study of "chronic fatigue syndrome."

The real scientists have arrived and they'll be studying XMRV-associated neuro-immune disease, a.k.a., XAND.

The name ginned up in Atlanta in 1988 to make sure disability insurers would not be required to pay out on disability policies and the public would assume the malady was a new category of mental illness? One can imagine, or simply hope, that the phrase is about to be jettisoned into outer space where one can fantasize it entering the band of space trash circling the earth. For months, the team at WPI has been playing around with names. In lighter moments, their favorite became “I.T.V.S.,” the acronym for, “It’s the Virus, Stupid.”

Thank you Harvey and Annette Whittemore; thank you Daniel Peterson of Sierra Internal Medicine; thank you Judy Mikovits and Francis and Sandy Ruscetti and your collaborators at the National Cancer Institute; thank you Robert Silverman of the Cleveland Clinic. Anyone who knows the immense backstory here will appreciate the profound cosmic justice of today's revelations.

                                                                     ***

In less than two years and with a million dollars--most of it private, philanthropic money because both the NIH as well as the CAA refused the institute's requests for grant support--Mikovits et. al. appear to have solved our problem.

Science magazine held the paper, submitted in May, through the summer while federal scientists in Bethesda worked on their roll out strategy for the discovery that XMRV, the fourth human retrovirus, had been found in the blood and saliva of 67 percent of "CFS" patients. Today, Mikovits is finding XMRV in 98 percent of the patients tested. She and her colleague in Reno, Vincent Lombardi, have found the virus in patients from multiple outbreaks, mutiple geographic regions, and in patients' blood samples that have been frozen since the mid-1980s.

Will anyone with “CFS” not be positive for XMRV? Certainly. Of course! I suspect there will be negatives among CDC's patients in Macon County, Georgia; same goes for the CDC's cohort in Wichita. Just a guess.

As far as the scientists in Nevada are concerned, "chronic fatigue syndrome" is of little further import. Let the CDC's finest--Bill Reeves, James Jones and their contractors, the psychiatrists like Chris Heim at Emory--pursue their study of adults with histories of sexual molestation.

"Chronic fatigue syndrome" is over, except maybe in Witchita, in Macon County, Ga. and in Bill Reeves' head.

Overnight, the Whittemore Peterson Institute and its collaborators have turned a 20-year crime story back into a science story.

***

XMRV, the fourth human retrovirus (HIV was the third) is the first infectious human retrovirus to be linked to disease in twenty-six years. In September, Ila Singh at the University of Utah reported in the Proceedings of the National Academy of Sciences that XMRV could be found in the tumor cells of the most aggressive prostate tumors. Earlier, in April, this infectious pathogen was found in human semen. Could XMRV, like Human Papilloma Virus, be a sexually transmitted infection that causes cancer? They're working on it.

The virus was discovered by Robert Silverman, a cancer biologist at the Cleveland Clinic's Lerner Research Institute, in collaboration with Joesph DeRisi and Don Ganem of the Howard Hughes Medical Institute at UCSF in San Francisco. The group reported their discovery in February of 2006. XMRV generated tremendous interest among virologists, but raised hardly an eyebrow in the mainstream press until now beause it had yet to be definitively associated with any specific disease or diseases. Silverman is also among the network of scientists who collaborates with investigators at the Whittemore Peterson Institute.

XMRV is a gammaretrovirus, as opposed to HIV, which is a lentiretrovirus, from the Latin for "slow." Lentiretroviruses may take years to cause symptoms after infection. Not so gammaretrovirues. They've long been known to cause neurological disease, cancer and immune deficiency in animals. Until 2006, scientific dogma held that gammaretroviruses infected only amimals.

XMRV has been in the human population—and we can assume, in the nation’s blood supply--at least since 1984. Mikovits found XMRV in a sample of frozen blood that had been saved by Dan Peterson as long ago as 1984. The blood happened to have had been drawn from a patient who went on to die of mantle cell lymphoma, another disease XMRV is suspected of causing.

Today, there are an estimated one million people sick with XMRV-associated neuro-immune disease in the United States and ten million infected, or 3.7 percent of the U.S. population, with a virus of "unknown pathogenic potential."

..

Given that Dr. Mikovits, her team at the Whittemore Peterson Institute, and her colleagues at the National Cancer Institute have determined a human retrovirus may be at the heart of this disease, the failure of the Centers for Disease Control to respond professionally and rationally when presented with a novel retrovirus in patients and their close contacts in 1991 by Elaine De Freitas of the Wistar Institute needs to be revisited immediately.

We’ve known since early 1996, when Osler’s Web was published, about the CDC’s fiscal malfeasance and lies to the Congress and, in partnership with the organization CAA, to the public, as regards this disease. We’ve monitored the agency's willful ignorance of—indeed, their extreme hostility to—the science in this field. We’ve recognized their propagandistic agenda. We’ve never lost sight of their bio-ethical failures. But if it turns out their failure to replicate Elaine DeFreitas’s findings of a novel retrovirus in this disease, followed by their attempt to destroy her professional reputation, was purposeful, or even incompetent, then the multi-billion dollar complex of buildings in Atlanta known as the CDC is as much a crime scene as it is a federal science agency.

Indeed, in light of the Science study released today, what may have seemed like sheer incompetence and political maneuvering in the early 1990s needs to be re-examined by the U.S. Congress. It’s not a minute too soon to utter the words, “Class action lawsuit,” either.
...

History is shifting. The pundits, the people who are paid to ask why, will finally ask the questions they should have asked twenty-five years ago: why medicine is so obtuse, its practitioners so willfully ignorant. How could our government and the governments of other nations dismiss and then ignore millions who suffered from “An infectious disease of the brain,” as Hilary Koprowski of the Wistar Institute called it publicly in 1992. Koprowski was an expert in neurological diseases—he knew one when he saw one.

They will talk about the dangers of scientific bias and the strange, near-criminal manner in which a disease could be defined, for so long and in spite of so much contrary evidence, as a personality disorder, its victims whiney yuppies who were, in the words of Johnny Carson, “too tired to tie their sweaters around their necks.” Carson never knew how close he got—the part about the sweaters? Slam dunk.

Mikovits and her collaborators may have changed the course of medical history. This discovery may lead in many important directions, explaining, for instance, why immune system cancers—lymphoma and leukemia—have been on the rise for the last twenty years. It may explain why inflammatory cancers of the breast, prostate and pancreas are becoming more common, too. And it may explain autism, atypical MS, and fibromyalgia—even amyotrophic lateral sclerosis. Certainly, it has very probably explained the pathophysiology of our disease. Why we are riddled with co-infections—herpes viruses, enteroviruses, mycoplasmas. Why we have NK deficiencies. Why we have encephalitis. Why we get lymphoma, thymoma, and acute lymphocytic leukemia. Why we are sick for decades, not days.

Word spreads fast these days and secrets are hard to keep, especially secrets as fascinating as this one. Science was forced to move up their publication date, originally set for October 16th, due to the rumors and gossip on Internet chatrooms, blogs and websites that began two weeks ago. The news was spreading virally, if you will. With over a million Americans sick, this news was never going to be secret for long.

Let’s make sure this horrific chapter in medical history is not forgotten. The years of our lives during which thousands of research papers were written by psychiatrists or wanna-be psychiatrists purporting to explain away a life-destroying disease with discussions of personality disorders, exercise and activity phobia, malingering, hysteria, stress, sexual abuse, school phobia, Type A behavior, attention-seeking behavior, and any other kind of behavior, must be respected, the papers saved for posterity. Princeton English professor Elaine Showalter’s book equating this disease with fantasies of alien abduction probably deserves its own shelf in this pantheon of the grotesque. And, rest in peace—if you can—Stephen Straus, father of the movement. All these works will be examined, in time, by researchers who seek to understand the human capacity for delusion, ignorance and greed.

Sometimes, music is enough.

http://oslersweb.com/blog.htm?post=638469

Sad and tragic when so much suffering engenders such a misdirected Federal, even worldwide response, and that so (comparatively) little philanthropy can so advance matters that stalled, stymied and elicited little but truly epic Fail from the world's largest public health agencies. Forget the hero virus-fighters in Ebola movies; it's mostly PR. This is RL.

Word comes from the UK of Pamela Weston’s assisted suicide at the Dignitas clinic in Zurich, Switzerland. Weston, in a letter written before she died, described her eighteen year nightmare of M.E., which began with a flu-like malady in August, 1991.

“I can no longer write professionally any more. There is nothing else I want to do. Nothing else I can do. I am too weak, too tired.”

She described her “happy life" as a classical musician, teacher and writer up to the day she fell ill.

“…ME put a stop to all that,” she wrote.

During her 18 years of illness, years during which she experienced a decline that resulted in no fewer than four heart attacks in her final two years, she was offered little by way of treatment, what she was offered did not help, and she suffered the double insult of being caught up in a mass delusion fostered by psychiatrist-quacks in England and the U.S. that her disease was psychological.

“I’ve had a wonderful, happy life. Now it's over. What I want now is for campaigners, such as Action for M.E, to use my story to push the Government hard on medical research,” Weston wrote sometime before she took barbiturates on September 9, 2009.

Suggested further reading-

Three Million Dollars

Anthony Fauci

Stephen Straus

Heroes and Villains

More to come, hopefully, tho not too much. Ties in with the healthcare debate in (at least) Big Medicine helping insurancecos avoid paying disability claims, and more.

Goodnight soon and amen.


If all economists were laid end to end, they would not reach a conclusion - George Bernard Shaw

"Fire up a colortini, sit back, relax, and watch the pictures, now, as they fly through the air."

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#2 2009-10-13 8:20 am

mo' ron
PS3 4 EVA
From: NC, USA
Registered: 2002-10-15
Posts: 14242

Re: A world inverting, a Vietnam winding down- the 4th human retrovirus

They could have done without all the fluff in their narrative.

So some previously unknown virus was discovered? But because the symptoms affected neurology, the insurance companies said it was all psychological and didn’t do anything to cover it?


What is the difference between Vista and OSX?
- Microsoft employees are excited about OSX.

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#3 2009-10-13 9:14 am

ShnickyShnack
::: title edited due to Satanic influences :::
From: Rockin' out
Registered: 2001-05-25
Posts: 22237

Re: A world inverting, a Vietnam winding down- the 4th human retrovirus

Yeah, talk about melodrama.

The scientists might have been wrong. It happens a lot more than we'd like to believe. And I'm not sure how certain we can be about this new discovery.


Note: please delete this post.

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#4 2009-10-13 9:25 am

ScifiterX
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From: NW Palm Bay, Florida
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Posts: 18087
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Re: A world inverting, a Vietnam winding down- the 4th human retrovirus

They pull the same with Fibromyalgia sufferers.

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#5 2009-10-13 9:26 am

macnuke
just a plano guy
Moderator
From: North Dallas 40
Registered: 2004-05-16
Posts: 7132

Re: A world inverting, a Vietnam winding down- the 4th human retrovirus

X-Men Retro Virus

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#6 2009-10-13 9:33 am

user
Your plastic pal who's fun to be with
From: I'm not getting you down, am I
Registered: 2001-10-15
Posts: 16016

Re: A world inverting, a Vietnam winding down- the 4th human retrovirus

I'm too tired to read all that.


Aw, he's no fun, he fell right over.

Unless you become as little children, there's no way you will believe this crap.

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#7 2009-10-13 7:25 pm

Bat
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Royal Wombat
From: Björk, Björk
Registered: 2001-05-14
Posts: 28541

Re: A world inverting, a Vietnam winding down- the 4th human retrovirus

And I'm too tired to respond at much length.

Thanks, Sci.

user wrote:

I'm too tired to read all that.

And I hope that's your dry humor, else...

mo' ron wrote:

They could have done without all the fluff in their narrative.

Thanks, I added some myself. If you're an author and a sufferer, you might go beyond 'just the facts, ma'am,' too, leaving the abstracts to the scientists.

So some previously unknown virus was discovered?

Unknown until 2006, and not just 'a' virus.

XMRV, the fourth human retrovirus (HIV was the third) is the first infectious human retrovirus to be linked to disease in twenty-six years.

You remember HIV, a retrovirus causing a little something we like to call GRIDS- I mean, AIDS. This is the first human retro since HIV; I'd not too lightly dismiss it.

But because the symptoms affected neurology, the insurance companies said it was all psychological and didn’t do anything to cover it?

More like they jumped on it when the initial CDC investigation- conducted by a guy more interested in the Incline Village/Tahoe skiing, plus a newb out of his depth- was botched & trivialized. NIH was already heading down the wrong path, guided by Stephen Strauss. His boss, Fauci, had zero interest then or since and took Strauss at 100% face value. Did you bother reading my links, or just skim the post? But yeah; once given that cover, they ran with it, have ever since.

ShnickyShnack wrote:

Yeah, talk about melodrama.

Review your own number of thread starts and their titles, then tell me about melodrama... yo.

The scientists might have been wrong. It happens a lot more than we'd like to believe.

Science- you may've heard of that little rag down North- spent the summer reviewing it for publication. Altho the NIH, Fauci's call- following the CDC misappropriation $candal [HHS IG, GAO], in '99 shunted CFS from the NIAID div to the new, politically-created, unfunded Women's Health Div- has ignored it even more than since Strauss single-handedly promulgated the view (his own, apparently founded on... no known data) of this as a psychosomatic thing, The National Cancer Institutes are a NIH division. Thank God for independent research.

And I'm not sure how certain we can be about this new discovery.

When the finding of HTLV-III was announced, did you say that, or more like 'Wow, at last!'? Yes, it's preliminary, but solid, and begs further research.

For the both of you- and speaking of HIV- in the author's book and findable on the site both, can be found info on the conclusions of a team led by one R. Gallo, ca. '92 that 'CFS' was an inflammatory condition of the brain, apparently virally-mediated (tho the principal suspect then was HHV-6) and published in The New England Journal of Medicine; and... well, first:

Tho charged with at least some responsibility for investigation of this as an emerging illness/threat to public health, NIH has never had a standing committee for approval of research grants. They form ad hoc committees historically composed largely of shrinks and even dentists... one nigh-incredible result of which was to turn down a grant request by a certain Jay Levy (you remember),

Today, Gallo told a reporter he was disappointed. Montagnier, who is in Africa, said his old rival deserved to share the [Nobel] prize. But San Francisco researcher Jay Levy — the third scientist to publish the discovery of AIDS — was content.

...that guy- to follow up promising viral leads he'd found in CFS.

The NIH grant program for M.E. was eventually revealed to be bogus after several major scientists were refused funding, including San Francisco virologist Jay Levy--one of the discoverers of HIV--and leading Pittsburgh cancer researcher Seymour Grufferman, who had sucessfully obtained millions of dollars from NIH to study other diseases. Like many scientists to follow, both Levy and Grufferman left the field by the early 1990s in spite of having conducted promising pilot studies. "To drive a scientist like Jay Levy from this field is criminal," Grufferman said later.

Add that your vaunted Canadian healthcare largely regards CFS/M.E. the same way, and that altho Ampligen is nominally available, it is not covered. It is not cheap, either- unaffordable to most. Britain is largely guided by one Simon Wessely, a British shrink. He can be seen on a YouTube clip or two. He is a major proponent of CBT for this.

macnuke wrote:

X-Men Retro Virus

X-Off Another One.

Most of this is in my posted links. Ironic I had to expend the energy finding them. Unlikely I'll do it again; I usually only muster enough energy to get one meal a day... assuming I can afford it.

For anyone who can, responses are coming in. No links, but

Nature

"William Reeves, principal investigator for the Centers for Disease Control and Prevention (CDC)'s CFS public health research programme, says the findings are "unexpected and surprising" and that it is "almost unheard of to find an association of this magnitude between an infectious agent and a well-defined chronic disease, much less an illness like CFS". But Reeves is cautious. "Until the work is independently verified, the report represents a single pilot study," he says. According to Reeves, the CDC is already trying to replicate these findings. He also notes that CFS is a heterogeneous disease and likely arises from a combination of many factors."

LA Times

""It is almost unheard of to find an association of this magnitude in any study of an infectious agent and a well-defined disease, much less an [ill-defined] illness like chronic fatigue syndrome," he said in an e-mail. It is extremely difficult to prove causation with a ubiquitous virus like XMRV, and it "is even more difficult in the case of CFS, which represents a clinically and epidemiologically complex illness," he said."

"Unfortunately, Reeves said, the major flaw of the study is that there is not enough information about how subjects were selected to rule out any bias in choosing them."

Cover that ass, Reeves. You're toast.

Source unknown, likely a British newspaper- October 10, 2009

However, other researchers emphasised that the numbers published so far are too small to conclude anything about the cause of chronic fatigue syndrome. "It's spectacular but needs replication. And I hope that no one is thinking of prescribing anti-retrovirals on the basis of this," said Simon Wessely, professor of psychological medicine at King's College London. "It's very preliminary and there no evidence to say this is relevant to the vast majority of people in the UK with the condition."

Pretty predictable. I predict both are headed for the slag heap of scientific history.

Gee, I hope that's not too much to read, yo. And I didn't once write 'conservatard.'

D'oh.


sp

Last edited by Bat (2009-10-14 4:30 am)


If all economists were laid end to end, they would not reach a conclusion - George Bernard Shaw

"Fire up a colortini, sit back, relax, and watch the pictures, now, as they fly through the air."

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#8 2009-10-14 5:54 am

Bat
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Royal Wombat
From: Björk, Björk
Registered: 2001-05-14
Posts: 28541

Re: A world inverting, a Vietnam winding down- the 4th human retrovirus

mo' ron wrote:

They could have done without all the fluff in their narrative.

It's a blog, albeit a very good one. Less fluff from the NYT.

Many people with chronic fatigue syndrome are infected with a little known virus that may cause or at least contribute to their illness, researchers are reporting.

The syndrome, which causes prolonged and severe fatigue, body aches and other symptoms, has long been a mystery ailment, and patients have sometimes been suspected of malingering or having psychiatric problems rather than genuine physical ones. Worldwide, 17 million people have the syndrome, including at least one million Americans.

An article published online Thursday in the journal Science reports that 68 of 101 patients with the syndrome, or 67 percent, were infected with an infectious virus, xenotropic murine leukemia virus-related virus, or XMRV. By contrast, only 3.7 percent of 218 healthy people were infected. Continuing work after the paper was published has found the virus in nearly 98 percent of about 300 patients with the syndrome, said Dr. Judy A. Mikovits, the lead author of the paper.

XMRV is a retrovirus, a member of the same family of viruses as the AIDS virus. These viruses carry their genetic information in RNA rather than DNA, and they insert themselves into their hosts’ genetic material and stay for life.

Dr. Mikovits and other scientists cautioned that they had not yet proved that the virus causes the syndrome. In theory, people with the syndrome may have some other, underlying health problem that makes them prone to being infected by the virus, which could be just a bystander. More studies are needed to explain the connection.

But Dr. Mikovits said she thought the virus would turn out to be the cause, not just of chronic fatigue, but of other illnesses as well. Previous studies have found it in cells taken from prostate cancers.

"I think this establishes what had always been considered a psychiatric disease as an infectious disease,” said Dr. Mikovits, who is research director at the Whittemore Peterson Institute in Reno, a nonprofit center created by the parents of a woman who has a severe case of the syndrome. Her co-authors include scientists from the National Cancer Institute and the Cleveland Clinic.

Dr. Mikovits said she and her colleagues were drawing up plans to test antiretroviral drugs — some of the same ones used to treat HIV infection — to see whether they could help patients with chronic fatigue. If the drugs work, that will help prove that the virus is causing the illness. She said patients and doctors should wait for the studies to be finished before trying the drugs.

Dr. William Schaffner, an infectious disease expert at Vanderbilt University, said the discovery was exciting and made sense.

“My first reaction is, ‘At last,’ ” Dr. Schaffner said. “In interacting with patients with chronic fatigue syndrome, you get the distinct impression that there’s got to be something there.”

He said the illness is intensely frustrating to doctors because it is not understood, there is no effective treatment and many patients are sick for a long time.

He added, “This is going to create an avalanche of subsequent studies.”

My bold. Links in article.  http://www.nytimes.com/2009/10/09/healt … r=1&em

Last edited by Bat (2009-10-14 6:05 am)


If all economists were laid end to end, they would not reach a conclusion - George Bernard Shaw

"Fire up a colortini, sit back, relax, and watch the pictures, now, as they fly through the air."

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#9 2009-10-14 10:44 am

user
Your plastic pal who's fun to be with
From: I'm not getting you down, am I
Registered: 2001-10-15
Posts: 16016

Re: A world inverting, a Vietnam winding down- the 4th human retrovirus

A friend of mine has CFS.


Aw, he's no fun, he fell right over.

Unless you become as little children, there's no way you will believe this crap.

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#10 2009-10-14 11:18 am

DevoDoc
Vardøger
From: The East Wing
Registered: 2003-05-27
Posts: 2711

Re: A world inverting, a Vietnam winding down- the 4th human retrovirus

This reminds me a whole lot of the Helicobacter pylori story...

http://nobelprize.org/nobel_prizes/medi … press.html

In 1982, when this bacterium was discovered by Marshall and Warren, stress and lifestyle were considered the major causes of peptic ulcer disease. It is now firmly established that Helicobacter pylori causes more than 90% of duodenal ulcers and up to 80% of gastric ulcers. The link between Helicobacter pylori infection and subsequent gastritis and peptic ulcer disease has been established through studies of human volunteers, antibiotic treatment studies and epidemiological studies.

Last edited by DevoDoc (2009-10-14 11:19 am)


We also know how cruel the truth often is, and we wonder whether delusion is not more consoling. - Henri Poincaré
http://www.cdc.gov/images/campaigns/SwineFlu/stayhome_130x73.jpg

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#11 2009-10-15 4:04 pm

Bat
Flawless Cowboy
Royal Wombat
From: Björk, Björk
Registered: 2001-05-14
Posts: 28541

Re: A world inverting, a Vietnam winding down- the 4th human retrovirus

Sorry for the wall of text, but details count. I doubt much more'll be needed, tho the story will continue to unfold.

user wrote:

A friend of mine has CFS.

Sorry to hear, user. But that was part of my reason for posting this; while nowhere near as prevalent as CDC has been trying, thru redefining the diagnostic criteria to include almost anyone who's tired with no ready explanation, thus [re]psychologizing it, I knew there had to be a few members, and more members with friends, relatives, SOs with the condition. It's not rare, either. (I'm sure he/she'll be or has been relieved to hear about this, life sentence of sorts tho it is).

CDC's primary 'contractor' on CFS for some time has been Emory's 'Mind/Body' unit, part of their psych dept. Not likely it's accidental that several have graduated from CDC's CFS unit and taken the 10 minute stroll to Emory, to higher profile, higher-paying jobs. They turn out sterling work like this:

Last week Emory University issued a press release that reverberated in newspapers and media throughout the world:

Childhood trauma is a potent risk factor for development of chronic fatigue syndrome (CFS), according to a study by researchers at Emory University School of Medicine and the Centers for Disease Control and Prevention (CDC). The study is published in the Jan. 5, 2009 Archives of General Psychiatry.

Results of the study confirm that childhood trauma, particularly emotional maltreatment and sexual abuse, is associated with a six-fold increased risk for CFS. The risk further increases with the presence of posttraumatic stress disorder symptoms.


Somehow the news that so many people with chronic fatigue syndrome had been subject to child abuse struck me as outrageous --could this really be? Having come through the Lyme wars, where patients are routinely mislabeled "psychiatric," this kind of assertion is always a red flag to me.

6x more risk. Right- it's mostly childhood stress/sex abuse that makes us, poor dears, adapt poorly to life and its stressors. Uh-huh. Well, I wasn't abused, sexually or otherwise, and I doubt your friend was, either.

DevoDoc wrote:

This reminds me a whole lot of the Helicobacter pylori story...

http://nobelprize.org/nobel_prizes/medi … press.html

In 1982, when this bacterium was discovered by Marshall and Warren, stress and lifestyle were considered the major causes of peptic ulcer disease. It is now firmly established that Helicobacter pylori causes more than 90% of duodenal ulcers and up to 80% of gastric ulcers. The link between Helicobacter pylori infection and subsequent gastritis and peptic ulcer disease has been established through studies of human volunteers, antibiotic treatment studies and epidemiological studies.

Yup. And, tellingly, the same Anthony Fauci, AIDS Czar and Strauss' boss at NIH, was still ignorant of that, too...

In 1989, Fauci personally accompanied Stephen Straus to Capitol Hill and thence to the Longworth House Office Building, where they dropped in on Rep. John Porter of Illinois. Fauci saw Porter as a key political figure for two reasons; Porter sat on the House subcommittee for appropriations and Porter had a reputation (undeserved) as a proponent of the disease. Fauci told Porter that patients were applying undue pressure on Congress that, in turn, was being felt at NIH. Congress, Fauci lectured Porter, had no business telling scientists how to perform their jobs—i.e., what diseases they should be researching or how NIH money should be allocated to any particular disease. Straus, Fauci added, ‘wanted to be left alone to pursue his research as he saw fit, free from congressional scrutiny and demands.’” (Osler’s Web)

Porter seemed awestruck by Fauci, according to Porter’s administrative aide. The aide took a provocative pose with Fauci, however, raising the possibility that Straus was indeed mistaking an organic disease for a psychiatric one.

Fauci would have none of it. Instead, he expressed puzzlement over CFS victims’ vehement reaction to being told their difficulties were psychiatric, according to the aide.

“Look, if I tell someone they have an ulcer, they don’t get upset, but ulcers are related to the brain,” Fauci responded.

Actually the cause of stomach ulcers had been identified as common bacterium H. pylori seven years earlier.

The press took note. Credentialed quacks, the psychists and all are circling the wagons or scrambling for cover. This is a bomb likely to asplode the whole 'all in your head' thing forever.

In The News

October 9, 2009: Detection of an Infectious Retrovirus, XMRV, in Blood Cells of Patients with Chronic Fatigue Syndrome (Science)

View Abstract | View Reprint | View Full Citation

Consortium of Researchers Discover Retroviral Link to Chronic Fatigue Syndrome (NIH/National Cancer Institute Press Release, October 8, 2009)

Whittemore Peterson Institute Scientists Discover Significant link between XMRV and ME/CFS (WPI Press Release; October 8, 2009) [PDF]

Virus Linked To Chronic Fatigue Syndrome (NPR, October 8, 2009)

Virus Found in Many With Chronic Fatigue Syndrome (NYTimes.com, October 8, 2009)

ME virus discovery raises hopes (BBC NEWS | Health, October 9, 2009)

Retrovirus Might Be Culprit In Chronic Fatigue Syndrome (Science News, October 8, 2009)

Chronic fatigue caused by retrovirus, say scientists (Mail Online, October 10, 2009)

'Most cases of chronic fatigue syndrome linked to virus' (Telegraph, October 9, 2009)

Retrovirus May Be at Root of Chronic Fatigue Syndrome (US News and World Report, October 8, 2009)

Retrovirus Linked to Chronic Fatigue Syndrome (WebMD, October 8, 2009)

Study isolates virus in chronic fatigue sufferers (Reuters, October 8, 2009)

Chronic fatigue linked with virus (The Australian, October 10, 2009)

September 24, 2009: WPI Awarded Prestigious NIH R01 Grant
New Strategies to Decipher the Pathophysiology of Chronic Fatigue Syndrome

The abstract/PR will likely do for most. In part:

..
Commonality of an immune system defect in patients with CFS and prostate cancer led
researchers to look for the virus in their blood samples. In this study, WPI scientists identified
XMRV in the blood of 68 of 101 (67 percent) CFS patients.  In contrast, they found that eight of
218 healthy people (3.7 percent) contained XMRV DNA. The research team not only found that
blood cells contained XMRV but also expressed XMRV proteins at high levels and produced
infectious viral particles. A clinically validated test to detect XMRV antibodies in patients'
plasma is currently under development.
 
These results were also supported by the observation of retrovirus particles in patient
samples when examined using transmission electron microscopy. The data demonstrate the first
direct isolation of infectious XMRV from humans.
 
"These compelling data allow the development of a hypothesis concerning a cause of this
complex and misunderstood disease, since retroviruses are a known cause of neurodegenerative
diseases and cancer in man,” said Francis Ruscetti, Ph.D.,  Laboratory of Experimental
Immunology, NCI.
 
Retroviruses like XMRV have also been shown to activate a number of other latent
viruses. This could explain why so many different viruses, such as Epstein-Barr virus, which was
causally linked to Burkitt’s and other lymphomas in the 1970s, have been associated with CFS. It
is important to note that retroviruses, like XMRV, are not airborne.
..

Dan Peterson, M.D., medical director of WPI added, “Patients with CFS deal with a
myriad of health issues as their quality of life declines.  I’m excited about the possibility of
providing patients, who are positive for XMRV, a definitive diagnosis, and hopefully very soon,
a range of effective treatments options.”

Also

Overview

The spectrum of neuro-immune diseases including: Myalgic Encephalomyelitis (ME/CFS), Atypical MS, Fibromyalgia and Gulf War Syndrome, share common abnormalities in the innate immune response inc, which result in chronic immune activation and immune deficiency.

We have detected the retroviral infection XMRV is greater than 95% of the more than 200 ME/CFS, Fibromylagia, Atypical MS patients tested. The current working hypothesis is that XMRV infection of B, T, NK and other cells of the innate immune response causes the chronic inflammation and immune deficiency resulting in an inability to mount an effective immune response to opportunistic infections. (See XMRV paper in Science.)

This discovery opens an entire new avenue of Neuro-Immune Disease related research and our discovery has brought to this field world-renown immunologists and retrovirologists building our team of collaborators to translate our discoveries into new treatments as soon as possible.

Because retroviruses are known to cause inflammatory diseases, neurological disease immune deficiency and cancer the discovery of XMRV has far reaching implications for the prevention and treatment of not only lymphoma, one of the potentially devastating complications of ME/CFS but prostate cancer and perhaps many others.

As National Academy of Sciences member and expert retrovirologist, John Coffin wrote in the commentary accompanying our landmark publication in Science "One New Virus - How many Old Diseases". We look forward to translating this discovery into treatment options!

For more information on retroviruses, download a PowerPoint presentation by Kathryn S. Jones, Ph.D.; SAIC-Frederick/NCI-Frederick: Retrovirus101.ppt

My bold.  http://www.wpinstitute.org/xmrv/index.html

sp

Last edited by Bat (2009-10-15 4:06 pm)


If all economists were laid end to end, they would not reach a conclusion - George Bernard Shaw

"Fire up a colortini, sit back, relax, and watch the pictures, now, as they fly through the air."

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#12 2009-10-16 4:30 pm

sharonfairfax
Member
Registered: 2009-10-16
Posts: 2

Re: A world inverting, a Vietnam winding down- the 4th human retrovirus

Dr. William Reeves of CDC/CFS MUST be removed now: Virus was first found in 1991 by Dr. Elaine DeFreitas and KILLED off by NIH and the CDC (CDC contaminated the research to discredit DeFreitas' work - Leaving MILLIONS of terribly sick worldwide for the next 2 plus Decades.

Dr. William Reeves of the United States CDC/CFS program MUST be removed and replaced with someone acceptable to the CFIDS community NOW. The latest study on XMRV, the fourth human retrovirus recently discovered, provides further evidence that CFIDS is in fact a "real disease" and not a psychocrap illness that Reeves, his CDC associates, and his contractors can not refute. Reeves and his associates should be prosecuted by the law and put in jail for their deliberate destructive activities during Reeves time as the head of the CDC/CFS program. Investigations have been under way by the Inspector Generals of the CDC, NIH and DHHS. We have also requested that Reeves and the CDC be investigated, yet again, for possible funding issues with the CDC/CFS contractors (Emory University Mind-Body Program and ABT Associates). We do expect that Congressional action will begin soon.
Reeves and his CDC associates MUST BE REMOVED NOW. Enough is enough. The damage that this greedy, stupid man has done to millions of sick people is beyond criminal. Reeves is directly responsible for thousands of deaths to heart disease, the cancers that are seen in high proportions in the CFIDS population, and the suicides of those that could no longer "live" a life of pain and despair. Those that took their own life were not weak or mentally ill. Instead, they were so sick and with no where to turn and no one to believe them or help them saw no choice but to end their own suffering. Thousands of deaths sit on the head of Dr. William Reeves.
If you have any extra money, please go to the Whittemore Peterson Institute website at http://www.wpinstitute.org and donate what you can so that REAL and effective research into CFIDS can continue. We can NOT depend on the CDC as they have done nothing but demean and damage the CFID sick over the last three decades. The CDC/CFS/Reeves have wasted millions of dollars and two generations of lives while the Whittemore-Peterson Institute has made massive progress in just two short years and with about one million dollars in funding. It is going to be outside research that provides the cure for CFIDS, NOT the CDC. Please donate to this wonderful research institute - one that was in fact started by a Mother because her daughter was so ill with CFIDS. When a Mother is involved in the health of her child (and other "children") you KNOW it will succeed - and the WPI HAS indeed succeeded brilliantly.
See Hillary Johnson's website on CFIDS and the damage done by the CDC from the very first outbreak in Incline Village, Nevada more than two decades ago. Yes, those people are still very sick and permanently disabled - many are dead from the cancers most commonly found with CFIDS sick. http://www.oslersweb.com/

You will also read that this virus may have been discovered by a female reseacher at the CDC around 1991. The CDC did nothing with this research and her career was damaged. HAD the CDC bothered to look into her work back in 1991, millions of people, both here in the US and worldwide, would NOT be so sick, disabled, and in too many cases - dead from those cancers associated with this new virus. Recognize that this virus is believed to be contagious and that means that anyone - everyone is a possible target for this disease. I have lived with CFIDS for 15 years and my life has been pretty miserable. I truly wish I had died 15 years ago from a quick, deadly heart attack rather than have had to live in this miserable CFIDS sick body. Says something doesn't it?

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#13 2009-10-16 4:31 pm

sharonfairfax
Member
Registered: 2009-10-16
Posts: 2

Re: A world inverting, a Vietnam winding down- the 4th human retrovirus

Dr. William Reeves of the CDC/CFS program did NOT want this study and its data released into the public. This study shows that all the time and money that the CDC/CFS program spent was wasted and millions of lives were affected horribly by reeves greed and incompetance. It is in reeve's best financial interests to keep CFIDS a "psychiatric disease" as he and his associates are involved in the psychiatric arena, and NOT the viral arena they SHOULD have been in these last three decades. This so-called "NEW" virus was discovered back in the early 1990's by a female researcher at the CDC. The data and findings were surpressed by the CDC/CFS people and her career ruined.
The newly released study also shows quite clearly that this virus is contagious and that means that anyone can get it. I have had CFIDS/FM for the last 17 years and it would have been far kinder to me TOO if I had died quickly rather than have lived with CFIDS. Pre-illness, I was a hyper and driven person who worked 14 hour days, had two graduate degrees and was about to start on a doctorate. I was also managing 70 senior staff. Then one summer both my husband and I got a virus and he recovered and I got sicker and sicker until I was sleeping about 22 hours a day for months on end. The body has NO energy. One does not have the energy to lift their head, body, limbs and move. The full-body pain is horrendous and meds do little to relieve this pain. There is extreme damage to the brain and cognitive abilities. I believe my IQ dropped at least 40 points and I can no longer read a small book because I get "lost" and have no memory of what I have just read.
What Reeves and his CDC associates and contractors have done to CFIDS research is plain criminal. He should be prosecuted and put in prison for deliberate negligence at the expense of millions of people. Many of the CFIDS sick are dead from cancers that were recognized more than 15 years ago. So the CFIDS-Cancer connection is well known to CFIDS physicians, researchers AND the CDC/CFS/REEVES. The contagious aspect of this virus was also known two decades ago and Reeves himself told a patient that she should NOT give blood as there was evidence that CFIDS symptoms were being replicated in those receiving the CFIDS blood. Reeves KNEW this virus existed decades ago. Reeves KNEW this was highly contagious and deadly. Yet his financial interests with the Emory University Mind-Body Program and his Adjunct position at Emory kept him from doing what was right and what was his job. Reeves not only needs to be removed but prosecuted. The outrage within the CFIDS community is amazing. And the RAGE is directed straight at william reeves head of the CDC/CFS program.

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#14 2009-10-16 4:36 pm

ShnickyShnack
::: title edited due to Satanic influences :::
From: Rockin' out
Registered: 2001-05-25
Posts: 22237

Re: A world inverting, a Vietnam winding down- the 4th human retrovirus

Um, Houston we have a problemo ...


Note: please delete this post.

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#15 2009-10-16 5:10 pm

Jokotai
Random Data Wrangler
From: Spartanburg SC
Registered: 2009-08-18
Posts: 496
Website

Re: A world inverting, a Vietnam winding down- the 4th human retrovirus

Paragraph.

Carriage Return.

Paragraph.

Please.

These are serious accusations.  Perhaps you could supply a source?


There's what you love to do, and then there's what you get paid to do.  Those two things are often different.

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#16 2009-10-18 6:11 am

Bat
Flawless Cowboy
Royal Wombat
From: Björk, Björk
Registered: 2001-05-14
Posts: 28541

Re: A world inverting, a Vietnam winding down- the 4th human retrovirus

Osler's Web is a long book, and extensively documented. I used it as source for some of mine, if you checked.

I'm too tired to read all the above, now, let 'lone comment much, except to say it seems more strongly put than I have. We'll know more over time; DeFreitas' work is still in storage AFAIK in the basement freezers at Wistar. Potentially big money is invoved, so I'm not expecting a quick comparison... CDC botched the replication. They did it the first time, then failed to re-replicate it. Etc.

I'm not sure of Reeves' legal standing or knowledge, tho he should leave. I can't take it much further ATM except to say XMRV's transmissibility is in doubt. I'd not want my blood going into another person, OTOH XMRV is IIRC a mouse retro or relative (murine). My short form guess is a vector like Lyme's is at work; tick bites mouse, tick bites human. As with HIV, casual human-human transmission might be very atypical. It's early days.

Many cognitively unimpaired forum members omit para spacing- even some Mods. Easy, 'k?

'Night. asleep


If all economists were laid end to end, they would not reach a conclusion - George Bernard Shaw

"Fire up a colortini, sit back, relax, and watch the pictures, now, as they fly through the air."

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#17 2009-10-21 5:32 am

Bat
Flawless Cowboy
Royal Wombat
From: Björk, Björk
Registered: 2001-05-14
Posts: 28541

Re: A world inverting, a Vietnam winding down- the 4th human retrovirus

Bit of an update, not too major.

Dr. Judy Mikovits and her team at the Whittemore Peterson Institute for Neuro-immune Disorders (WPI) made a very insightful connection three years ago. XMRV was first described in prostate cancer in 2007 by investigators at the Cleveland Clinic, who also reported that XMRV-positive prostate cancer patients have alterations in RNase L, an antiviral immune system pathway. The WPI investigators knew that RNase L activity is also altered in blood cells from CFS patients and they made the decision to look for XMRV in CFS patients with this immune defect.

When scientists want to find a virus, we look for it in the sickest individuals because often this is where there is likely to be the highest levels of a virus, if present. Dr. Dan Peterson has been caring for and researching CFS patients since the 1984 Incline Village outbreak, so he identified CFS patients with prolonged disabling fatigue, cognitive impairment, and documented laboratory immunological abnormalities (including altered RNase L activity) to hunt for XMRV.

I wondered what the common immune defect was. We've known about the altered RNAseL pathway since about '96; within a few years it became further known that, amongst other abnormalities, the normal 80-weight molecule was not the only one present in CFS patients. A more aggressive, less specific 37-weight molecules was also present, and later research confirmed the normal molecule was being cleaved in two, leaving two 37s and some genetic debris.

The WPI laboratory team detected XMRV sequences in 68 of 101 (67%) CFS patients tested and in 8 of 218 (3.7%) healthy control subjects. The Cleveland Clinic confirmed the presence of XMRV in a subset of these same CFS cases, 7 of the 11 (64%) samples from WPI. The Cleveland Clinic researchers found that the CFS XMRV was similar to prostate cancer XMRV, and not a mouse virus (murine leukemia virus) that could have been a contaminant explaining the discovery.

The investigators designed several laboratory tests to understand XMRV. They looked to see if XMRV was expressed in peripheral blood mononuclear cells (PBMCs) of CFS patients. PBMCs circulate throughout the entire system and can be important "sentinels" for processes occuring in the body. PBMCs from 19 of 30 CFS patients expressed XMRV proteins compared to 0 of 16 PBMC samples from healthy controls. They also wanted to know which cells harbored XMRV; they found it in T and B cells in the blood of one CFS patient. The investigators looked to see if the XMRV from CFS patients was infectious. Both blood cells and plasma (the cell-free fraction of blood) from XMRV-positive CFS patients were able to transmit this virus to a susceptible cell line, indicating infectiousness in laboratory culture. Finally, they wanted to know if XMRV stimulated the immune system to produce antibodies. Plasma from 9 of 18 CFS patients had antibodies that reacted with a virus protein similar to that found in XMRV, compared to no reaction from plasma of 7 healthy controls.

So at least some of the patients, and none of the controls, is making antibodies to it; and the 'Related' aspect is nailed down. It isn't the mouse virus per se; contamination is ruled out. Relative and/or derivative virus it is. Lucky us.

This is presumably all in the full article, but lacking the $15 for access, I guess I'll wait. It's not likely to influence any day to day decisions.


If all economists were laid end to end, they would not reach a conclusion - George Bernard Shaw

"Fire up a colortini, sit back, relax, and watch the pictures, now, as they fly through the air."

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#18 2009-10-23 7:18 pm

Bat
Flawless Cowboy
Royal Wombat
From: Björk, Björk
Registered: 2001-05-14
Posts: 28541

Re: A world inverting, a Vietnam winding down- the 4th human retrovirus

Johnson got a two page op-ed piece in the NYT that's a good summary of past and present, drawing attention & praise.

..

XMRV is a gammaretrovirus, one of a family of viruses long-studied in animals but not known to infect people. In animals, these retroviruses can cause horrendous neurological problems, immune deficiency, lymphoma and leukemia. The new study provided overwhelming evidence that XMRV is a human gammaretrovirus — the third human retrovirus (after H.I.V. and human lymphotropic viruses, which cause leukemia and lymphoma). Infection is permanent and, yes, it can spread from person to person (though it is not yet known how the virus is transmitted).

That would have been news enough, but there was more. XMRV had been discovered in people suffering from chronic fatigue syndrome, a malady whose very existence has been a subject of debate for 25 years. For sufferers of this disease, the news has offered enormous hope. Being seriously ill for years, even decades, is nightmarish enough, but patients are also the targets of ridicule and hostility that stem from the perception that it is all in their heads. In the study, 67 percent of the 101 patients with the disease were found to have XMRV in their cells. If further study finds that XMRV actually causes their condition, it may open the door to useful treatments. At least, it will be time to jettison the stigmatizing name chronic fatigue syndrome.

The illness became famous after an outbreak in 1984 around Lake Tahoe, in Nevada. Several hundred patients developed flu-like symptoms like fever, sore throat and headaches that led to neurological problems, including severe memory loss and inability to understand conversation. Most of them were infected with several viruses at once, including cytomegalovirus, Epstein-Barr and human herpesvirus 6. Their doctors were stumped. The Centers for Disease Control and Prevention, the nation’s presumed bulwark against emerging infectious diseases, dismissed the epidemic and said the Tahoe doctors “had worked themselves into a frenzy.” The sufferers, a C.D.C. investigator told me at the time, were “not normal Americans.”

When, by 1987, the supposed hysteria failed to evaporate and indeed continued erupting in other parts the country, the health agency orchestrated a jocular referendum by mail among a handful of academics to come up with a name for it. The group settled on “chronic fatigue syndrome” — the use of “syndrome” rather than “disease” suggested a psychiatric rather than physical origin and would thus discourage public panic and prevent insurers from having to make “chronic disbursements,” as one of the academics joked.

An 11th-hour plea by a nascent patient organization to call the disease by the scientific name used in Britain, myalgic encephalomyelitis, was rejected by the C.D.C. as “overly complicated and too confusing for many nonmedical persons.”

Had the agency done nothing in response to this epidemic, patients would now be better off. The name functioned as a kind of social punishment. Patients were branded malingerers by families, friends, journalists and insurance companies, and were denied medical care. (It’s no coincidence that suicide is among the three leading causes of death among sufferers.) Soon the malady came to be widely considered a personality disorder or something that sufferers brought upon themselves. A recent study financed by the C.D.C. suggested that childhood trauma or sexual abuse, combined with a genetic inability to handle stress, is a key risk factor for chronic fatigue syndrome.

Many people don’t realize how severe this illness can be. [..]

Dr. Nancy Klimas, an immunologist at the University of Miami School of Medicine who treats AIDS and chronic fatigue syndrome, remarked in The Times last week that if given the choice she would prefer to have AIDS: “My H.I.V. patients for the most part are hale and hearty,” she said, noting that billions of dollars have been spent on AIDS research. “Many of my C.F.S. patients, on the other hand, are terribly ill and unable to work or participate in the care of their families.”

Congress has appropriated money for research on chronic fatigue syndrome, too, though in far smaller amounts, but the C.D.C. has seemed unwilling to spend it productively. A decade ago, investigations by the inspector general for the Department of Health and Human Services and what was then called the General Accounting Office revealed that for years government scientists had been funneling millions meant for research on this disease into other pet projects.

My bold.  http://www.nytimes.com/2009/10/21/opini … hnson.html


If all economists were laid end to end, they would not reach a conclusion - George Bernard Shaw

"Fire up a colortini, sit back, relax, and watch the pictures, now, as they fly through the air."

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#19 2009-10-30 6:25 pm

Bat
Flawless Cowboy
Royal Wombat
From: Björk, Björk
Registered: 2001-05-14
Posts: 28541

Re: A world inverting, a Vietnam winding down- the 4th human retrovirus

Missed this at the time, albeit only a week or so ago; and it might otherwise go in a healthcare/insurance thread- but it's specific to this topic, and a piece of the puzzle as to why this has been marginalized so long. Follow the money.

UNUM STOCK TANKS AT 3 PM WEDNESDAY
October 21, 2009 

For all those whose lives have been turned into living hell by their disability insurers; who have been "pauperized" by legal and medical costs as a result of fighting losing battles with disability insurers; who lost their health, then lost their house, trying to win disability benefits; who have felt their footing in life slipping away while their disability insurer waged war on them--take heart.

Something made stockholders start dumping UNUM shares at about 3 pm Wednesday afternoon. UNUM is the largest disability insurer in the world, with ties to the shrink lobby in the UK and a 20-year commitment to making sure no one with "chronic fatigue syndrome" receives disability support.

Did any UNUM stockholders happen to read the Times op-ed today and notice the comment about the CDC's desire in 1987 to protect disability insurers from making "chronic disbursements"?

Did they look at that number--one million Americans sick with a devasting disease that may be about to be resolved by bona fide science? Did they read about the potential "dismantling" of the construct, "chronic fatigue syndrome" and the new name for the disease that afflicts people who are infected with an oncogenic retrovirus?

Did they scratch their chins and start thinking about a fast-approaching day when UNUM might have to start paying out on those claims instead of sending the claimant to search for shelter under the nearest bridge?

Something made stockholders decide to start pulling their money out of UNUM. Wednesday, October 21, 2009. At 3 p.m.


If all economists were laid end to end, they would not reach a conclusion - George Bernard Shaw

"Fire up a colortini, sit back, relax, and watch the pictures, now, as they fly through the air."

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