Life as we know it: 8/22/10

Friday, August 27, 2010

NBC reports potential HIV cure...

... using two currently-approved cancer drugs, Decitbaine and Gemcitabine. The combo caused HIV to mutate and die, according to researchers at University of Minnesota.

Perhaps this combo will also work for XMRV?

Check out Study: Nonreligious Docs Hasten Death More

Study: Nonreligious Docs Hasten Death More - Health News Story - KCRA Sacramento

CFIDS.org writes:

More than 350 news outlets have reported on the CFS research paper published this week in the Proceedings of the National Academy of Sciences. This week's print edition of Science magazine includes this story. You can find links to major coverage on our MLV page at http://www.cfids.org/mlv/default.asp

Betting on X - As in XMRV - With a Big-Ticket Research Center

Betting on X - As in XMRV - With a Big-Ticket Research Center
August 26, 2010, 12:58 PM ET
By Amy Dockser Marcus
http://blogs.wsj.com/health/2010/08/26/betting-on-x-as-in-xmrv-with-a-big-ticket-research-center/

Reno, Nevada is a gambling mecca. But the biggest bet in town might be
the one being made on a retrovirus called XMRV.

XMRV has been studied in labs around the world since a paper published
last year in Science found a link between the retrovirus and chronic
fatigue syndrome. And few places have put more money on X — as
scientists often refer to it — than the Whittemore Peterson Institute
for Neuro-Immune Disease in Reno, home to the scientists who led that
research.

The WPI is part of the just-opened $70 million Center for Molecular
Medicine at the University of Nevada, Reno. Annette and Harvey
Whittemore, who have a daughter with chronic fatigue syndrome, founded
the institute with $5 million of their own money. All of the
institute's projects are connected to X, Annette Whittemore told the
Health Blog last week, before the start of a scientific symposium held
at the WPI. (Whittemore is president of WPI.)

But this week, researchers led by NIH disease expert Harvey Alter
published a paper in PNAS that raises the question of whether X,
specifically, is the key culprit in CFS. The scientists reported
finding in CFS patients a family of retroviruses called MLV-related
viruses — of which X is a member — but not X itself. Instead they
found different members of the MLV family that they're calling P.

In a briefing this week about the findings, Alter emphasized that the
paper confirms the earlier work because it shows a strong association
between this family of retroviruses and CFS. But the new paper's
finding raises the possibility that perhaps P will turn out to be more
important than X. It's also important to point out that no one has yet
demonstrated that X, P or any other virus causes CFS.

The Health Blog asked Annette Whittemore after the Alter paper came
out if she was concerned about how closely linked the institute is
with X. She said that one of the hot topics at the recent WPI
symposium was whether X might turn out to have different strains, the
same way scientists now talk about HIV-1 and HIV-2. "We called it XMRV
at the time because that was the name that had been used," she says.
As scientists understand more about the broader family — including the
P viruses mentioned by Alter –the terminology, too, might eventually
change. "The name isn't as important as the concept that these are
retroviruses infecting human beings," she says.

As for the new space's treatment area, infusion room, clinical lab,
and research lab — all of which Whittemore hopes will be up and
running by fall — she says they're needed even if it turns out X
contributes to CFS but doesn't cause it. She said that if patients
with X are treated for the infection using antiretrovirals or other
drugs and improve, it would offer a potential new strategy in finding
treatments for CFS. WPI is not yet treating CFS patients, but it has
set up a clinical working group to collect and study outcomes data
from the doctors who are already prescribing antiretrovirals for their
CFS patients.

"If we discover at the end of the day that X is not the most important
player, are we flexible [enough] to recognize and treat whatever comes
along? Yes, we are," says Whittemore. "But we would be remiss not to
focus on the pathogen most highly associated with CFS to date and try
to get to the bottom of it."

Wednesday, August 25, 2010

JOB: Get in on Exciting New Retroviral Research

The Centers for Disease Control has issued a job announcement for Chief,
Chronic Viral Diseases Branch, which includes primary responsibility for
the direction and substance of the Chronic Fatigue Syndrome research
program. This program contains the largest single budget (US) for CFS
research ($5 million/yr). The Chief serves as principal investigator of
epidemiology studies, and personally develops laboratory research programs
designed to improve diagnosis and management of human papillomavirus
(HPV)-associated cancers, CFS, and other related unexplained or chronic
illnesses.

This is a critically important position that can influence science,
practice, and health policy related to CFS. We encourage highly qualified
individuals to apply for this position.

For the complete announcement, click on:

http://jobview.usajobs.gov/GetJob.aspx?JobID=90144747&FedEmp=Y&FedPub=Y&sort=rv,-dte
...

Thank you.

Fred

Fred Friedberg, PhD
President
IACFS/ME
www.iacfsme.org

Review Of FDA Drug Trials Shows Antidepressants Jaw Droppingly Useless

Review Of FDA Drug Trials Shows Antidepressants Jaw Droppingly Useless

A new review of 4 meta-analyses of efficacy trials submitted to the US Food and Drug Administration (FDA) suggests that antidepressants are only "marginally efficacious" compared with placebo and "document profound publication bias that inflates their apparent efficacy." In addition, when the researchers also analyzed the Sequenced Treatment Alternatives to Relieve Depression (STAR*D) trial, "the largest antidepressant effectiveness trial ever conducted," they found that "the effectiveness of antidepressant therapies was probably even lower than the modest one reported...with an apparent progressively increasing dropout rate across each study phase." Lead study author Ed Pigott, PhD, a psychologist with NeuroAdvantage LLC in Clarksville, Maryland, said: "...if you're trying to look at sustained benefit, you're only looking at 2.7%, which is a pretty jaw-dropping number." Overall, "the reviewed findings argue for a reappraisal of the current recommended standard of care of depression," write the study authors.
Deborah Brauser, Medscape Today

* * *

Of course, we've known for 20 years that anti-depressants are completely useless against CFS...... Which has not stopped doctors from prescribing them, and scolding patients when the useless drugs don't produce a miracle cure.

Tuesday, August 24, 2010

Private funds helped push CFS research | Marketplace From American Public Media

Private funds helped push CFS research | Marketplace From American Public Media

marketplace.publicradio.org

A study published by the National Academy of Sciences found links between Chronic Fatigue Syndrome and a virus in the same class as HIV. Research for the syndrome was possible largely due to private funding.

Three cheers for the Whittemores and the patients who've provided most of the research funding for the past 25 years!

In Reporting Symptoms, Don’t Patients Know Best?

Second Opinion - In Reporting Symptoms, Don't Patients Know Best? - NYTimes.com

"There is a sensibility among some old-school clinicians that they have a better sense of their patients' experience than patients do themselves," Dr. Basch said. "But doctors and nurses bring their own biases to the evaluation. They might say, 'Mrs. Smith always exaggerates her fatigue — she says 9, but I rate it a 6.' "

Three clinicians asked to rate the same patient's nausea will often give three different scores, he said.

* * *

As proven by my own experience. A series of doctors downplayed my reports of poor sleep, some with condescending comments like "sometimes when we think we are awake, we are actually asleep". Uh, yeah, I think I'm sitting in the living room knitting at 3 AM, but I'm actually asleep in my bedroom, and that finished scarf on the coffee table was put there by the fairies. Yuh-huh. One of us is hallucinating, and it ain't me.

Then I got to the sleeping pill clinical trial where they gave me a sleep diary to fill out and the doctor actually looked it over instead of tossing it aside. He had 30 days of "went to bed at midnight, still awake at 5 AM, slept 5-7 AM, then woke up and couldn't get back to sleep." Consistently. I'd rated my insomnia as "moderate", since I was getting *some* sleep. He upgraded it to "severe" because I was getting 2 hours a night and it took till 5 or 6 AM to fall asleep. So much for "this patient always exaggerates", huh?

One of the other doctors later explained that he didn't need to give me a sleeping pill, because I was already spending 18 hours a day in bed. That "in bed" and "asleep" are two different things never crossed his mind. Nor did he understand the difference between quantity and quality of sleep.

Another argued that there was no need for a sleep study to prove how little sleep I was getting, because sleep studies are only ordered for sleep apnea, and I said I don't snore. Noooooo, what I said was that I don't know if I snore, because I sleep alone and had for years. Really, though, what he meant was, if we order a sleep study and it proves you're telling the truth about only getting 2 hours of sleep, then we'll have to accept as truth all the other symptoms we're currently dismissing because we think you're exaggerating. Much easier to refuse to order it and write "patient is depressed" in the medical records.

When a Doctor Plays Down Your Symptoms - Well Blog - NYTimes.com

Doctors Who Mock Their Patients - Well Blog - NYTimes.com

This is the next thing we need to go activist about -- I've been verbally abused for "not wanting to get better" when the wrong pills for the wrong condition didn't help. I've been mocked for daring to think that more tests would uncover a physical problem when the doctor wanted to find something psychiatric. I've been bullied to see yet another psychiatrist when the first didn't say what the doctor didn't want to hear.

Today's Words of Wisdom

Like Schopenhauer said more than 100 years ago,
"The TRUTH always goes through 3 stages....
First, it is ridiculed...
Second, it is Vehemently opposed...
Finally, it is accepted as being self evident...."

Thanks to Tom H for this quote.

We've been through ridicule and vehemently opposed. And now we are well on our way to "self evident".

Personally, it was always self-evident to me that if I was happy and healthy the first week of February 1987, had a severe virus the second week of February, and never again felt like myself, that the virus was the cause of the problems.

Not, as the first doctor insinuated, the marriage that took place six months after I started to have symptoms, and definitely not the divorce that occurred a decade later.

But what do I know? I'm not a doctor, and even though they weren't there, the doctors claimed to know better than I did when the symptoms started and why.

History's Mystery Illnesses - Newsweek

Page 4

The Centers for Disease Control notes, "The cause or causes of CFS have not been identified and no specific diagnostic tests are available. Moreover, since many illnesses have incapacitating fatigue as a symptom, care must be taken to exclude other known and often treatable conditions before a diagnosis of CFS is made." Though theories abound—infection from nanobacteria (though it's not clear such organisms even exist), postviral immune reaction, psychological disorder—nothing conclusive has been determined about the cause or causes of chronic fatigue syndrome. A study published Aug. 23 linked CFS to a class of viruses known as retroviruses (it is the second study to find that result), suggesting that retroviruses may play a key role in curing the disease. But, as doctors are often quick to point out, CFS is real and disabling no matter the cause. Here, a nurse discusses treatment options with Andrea Enright, who suffers from chronic fatigue and other illnesses.

Chronic Fatigue Syndrome Linked to Mouse Virus in U.S. Government Study

Chronic Fatigue Syndrome Linked to Mouse Virus in U.S. Government Study - Bloomberg

The new virus and the XMRV virus implicated in the initial study last October are retroviruses, which insert themselves into the genome of the cells they infect in order to multiply. The same approach is used by HIV, the virus that causes AIDS, leading some researchers to test drugs for that deadly disease against chronic fatigue.

Merck's Isentress fought XMRV more powerfully than 44 other anti-HIV compounds in laboratory tests, according to an April study from researchers at Emory University and the University of Utah.

Second Paper Supports Viral Link to Chronic Fatigue Syndrome

Second Paper Supports Viral Link to Chronic Fatigue Syndrome - ScienceNOW

Chronic fatigue study points to retrovirus

David S Bell, MD | Lyndonville News

At this point, what's on the website is the newsletter he sent out last week, but I do expect some update soon. Dr. Bell is usually right on target with his predictions -- he said 20 years ago that maybe the reason they weren't finding any organ damage was because it was something that wreaks havoc without damage. Sure enough, then came the proof that the Central Nervous System is involved, and can cause all these different body functions to go haywire without causing any visible damage.

Last week, he wrote:

"Dr. Harvey Alter can find it, but his paper was held after being accepted by the very prestigious journal PNAS. Very strange happenings, and I hope that someone is keeping a very accurate diary of all this. ... On the negative side, perhaps there is an organized effort to marginalize XMRV, even if it is the cause of CFS, because it may be expensive to treat. We know that this has been done before, with the excuse being "good science". Personally, I would insist on good science, but not political science. Lets find out what is there. If XMRV is marginalized, it will be no more visible to mainstream medical practitioners than the 2'-5' A synthetase, RNAse L, blood volume, isoprostanes, IVRT, natural killer cell data, immune upregulation, and the many other good science that has been done on CFS. It is all meaningless if the patients never get to see the benefit of this science."

And it's true -- until I read Osler's Web, I didn't know what-all was already known about CFS because what the researchers know isn't getting to the front lines. Treating doctors don't learn diddly-squat about it unless the patients educate them. And, well, (1) I'm getting tired of having to educate doctors, and (2) some doctors will remind you that they have an MD degree and you don't, therefore why should they listen to you?

For a couple years, what self-help I was doing for myself (rest, pacing, natural supplements) was more effective than what the doctors wanted to do for me (anti-depressants and making myself sicker by "exercising my way back to health" -- one wanted me to go for a walk even on days I couldn't get out of bed without collapsing to the floor!). Some of the stuff they tried to do to me (or make me do to myself) could've killed me if I hadn't been a well-educated patient who knew better.

Nonetheless, everything I know didn't help me one bit because I couldn't write my own prescriptions and I wasn't finding a doctor willing to prescribe what I asked for; they all just wanted to dole out anti-depressants, and two of them insisted on prescribing something that I'd been told NEVER to take because of an adverse reaction to a related drug. When I protested, I was told "it'll be fine"; the pharmacist refused to fill the prescription because it was NOT going to be "fine", it might be fatal.

So, yeah, we've got to get this information out of the lab and into the hands of every single doctor in the country. Only then can it help people.

Dr. Lombardi made it clear over the weekend that if the doctor you're seeing is not willing to be educated, find a new doctor. Unfortunately, I went through half a dozen of them and still hadn't found one who knew what he was doing nor was willing to learn what he should be doing. Just like with marriageable men, "all the good ones are already taken" -- the only doctors in the medical group accepting new patients are the ones no one else wanted. (And we have a large, very religious, immigrant community here, such that in some medical groups, only those with religious proscriptions against male/female interactions are allowed to sign up with the limited number of female doctors in the medical group because there simply aren't enough female doctors to go around to all the women who want someone to take us seriously.)

My current doctor, who is willing to treat me and a couple of other patients, is not willing to become a CFS specialist. I've tried inviting him and/or his staff to CFS seminars, even offered to pay their way, and he's not interested. Take good notes, mail them to us, we'll put them in your file for reference, but no, he does not want to be overrun with CFS patients seeking a miracle.

At least now, when I'm asked for a referral, I can tell people to take Amtrak up to Reno to be seen at WPI. It's an $80 round trip, and the scheduling is awfully tight if you're planning to go up and back the same day, so you'll probably have to pay for meals and a hotel. But it's better than nothing ... unless you're not married and the cost of the trip and the appointment exceeds your limited income.

Monday, August 23, 2010

Whittemore-Peterson Institute - A Light in the Darkness (XMRV Update)

The Whittemore-Peterson Institute - A Light in the Darkness (XMRV Update!!!) - AGE OF AUTISM

" Like autism, chronic fatigue syndrome has been the subject of scorn and ridicule in the medical community. Even when pioneering scientists showed significant immunological abnormalities among chronic fatigue syndrome sufferers it was difficult to get the medical community to pay attention."

"I've become aware of the chronic fatigue community over the past several months because of their similarities to the autism community. Like us, they have been attacked by the medical community, and perhaps even more cruelly, since the medical community has often engaged in an active campaign to label them as psychologically unsound."

Facebook | CFS Facts

Facebook | Whittemore Peterson Institute

New evidence linking mouse virus and chronic fatigue - CNN.com

Chronic fatigue study points to retrovirus

Definition of Retrovirus

Retrovirus - Definition of Retrovirus

NIH/FDA Study Confirms: XMRV Tied to Chronic Fatigue Syndrome

"Don't expect doctors to start doling out these drugs, though. This study helps prove that this virus is in a lot of sick people, but we still don't know if it's what's making them sick."

Happy Vindication Day!

Some people on the WPI Facebook page are referring to August 23, 2010 as Vindication Day.

I agree -- it's been a long time coming, but those who have been determined to pretend that CFS is just another name for depression (or laziness or malingering or attention-seeking) are about to get their long-overdue comeuppance as the rest of the medical profession learns that we really do have a virus, and a serious one: we're not faking anything. So many of us have said all along "my symptoms started with a virus" and had doctors disregard our own experience to substitute their own prejudices about women, particularly middle-aged women; now it's been proven that we were telling the truth.

Let's get this party started! If you're one of the few patients who can handle a bit of alcohol, pour yourself a glass of champagne. If you're one of the many who have become alcohol intolerant, substitute ginger ale.

A toast, to Annette, Harvey, Dr. Judy and Dr. Vince!

(Now, to make sure they know they've been toasted, visit http://www.wpinstitute.org/ and make a donation, even if it's just $1. Show them some love!)

I have not been able to keep up with the exponential growth of the number of articles on XMRV today -- at times, averaging one a minute -- much less read and digest the research paper itself. I've even been just posting links to articles without comments because there just wasn't time to do everything. So, I'm sure there will be more posts coming in the next few days as I try to get through the backlog.

But I know you'd rather hear from the experts than me. Whittemore-Peterson Institute has a YouTube video up of Dr. Judy commenting on the Lo/Alter paper that was just released.

[as all my readers gallop off in a cloud of dust to see that] :)

The good news is, for the first time in 25 years, we have hope that CFS will be taken seriously, that the psychobabble and stonewalling will stop and serious research will begin into what's only the second human retrovirus ever discovered (the first being AIDS). Back in the 80s, some people called CFS "AIDS Lite" -- they were actually right on target.

Hey, Dr. Reeves and Wessely, I hate to say "I told you so" (well, not really) but ...

WE TOLD YOU SO!!!!!

THE FDA/NIH/HARVARD ³XMRV² STUDY: THE SAME THING, ONLY DIFFERENT by Mindy Kitei

THE FDA/NIH/HARVARD ³XMRV² STUDY:
THE SAME THING, ONLY DIFFERENT
by Mindy Kitei

The just-released study detects variants of the retrovirus XMRV in most CFS
patients. In addition, nearly 7 percent of the healthy U.S. controls‹all of
whom are blood donors‹test positive, signaling the contamination of the U.S.
blood supply. CFS Central interviewed Drs. Alter, Komaroff and Mikovits and
was the first to break the story.

Mindy Kitei
CFS Central
http://www.cfscentral.com

CFS Central: BLOOD FEUD

CFS Central: BLOOD FEUD: Part 1

CFS Central: BLOOD FEUD: Part 2

"Critics caution, however, that it's essential to follow the identical protocol of the original study to validate or disprove it, and if the researchers don't, they're in essence comparing apples to oranges. Interestingly, one of the authors of the second British study was an investigator on a study that failed to replicate the retroviral CFS research of Dr. Elaine DeFreitas at University of Pennsylvania's Wistar Institute 20 years ago. Back then, that scientist didn't follow DeFreitas's protocol either, and the media mislabeled the study a replication as well. ... It's possible the British studies couldn't find XMRV in the blood because it's not where the retrovirus likes to hang out. In addition, a German study published June 16 found XMRV in the respiratory tracts..."

CFS Central

"The just-released study detects variants of the retrovirus XMRV in most CFS patients. In addition, nearly 7 percent of the healthy U.S. controls—all of whom are blood donors—test positive, signaling the contamination of the U.S. blood supply."

WPI-Licensed Test for XMRV & Variants Now Available

"WPI's net proceeds from licensing of the tests to VIP Dx (formerly RedLabs USA) will be donated to support ongoing research at the non-profit Whittemore Peterson Institute for Neuro Immune Disease."

A Historical Watershed in the Study of ME/CFS and Associated Illnesses

August 23, 2010 – A Historical Watershed in the Study of ME/CFS and Associated Illnesses

What does your doctor hear when you talk?

What does your doctor hear when you talk? – The Chart - CNN.com Blogs

Pretty good admission that the average doctor hears nothing when you talk, because he wants to hear what he wants to hear.

My medical records are full of lies because doctors didn't hear a damn thing I said over the loud screaming misogynistic prejudices in their heads. They wrote down what they wanted to hear, regardless of whether it was what I said. One admitted to not asking certain questions because he was so sure of what the answers would be.

Another is sure that I told him that as soon as I got my diagnosis in 1988, I quit my job. That should be great news to the firms who hired me in 1990 and 1997 -- apparently they were giving a paycheck to someone who wasn't even there. Maybe they'll want their money back?

Get copies of your medical records every few months, read them, verify the information. If there's something in there that's going to hurt you in the future (like one doctor dismissing two specialists' opinions as my being "self-diagnosed"), file a HIPAA claim for correction. If, like my worst offender, the doctor leaves the medical group, getting the records corrected after his departure will be impossible.

Study reignites debate over virus' role in chronic fatigue - L.A.Times

Study reignites debate over virus' role in chronic fatigue - latimes.com

"researchers from three different government agencies said they had found the virus in stored and fresh blood samples."

"The illness itself has a long history of controversy. Thought to affect at least 1 million Americans and 17 million people worldwide, it is characterized by debilitating fatigue, chronic pain and depression, among other symptoms. But because there are no biochemical markers to identify it, some physicians still argue that it resides mostly in the minds of patients; activists contend that the CDC and other government agencies have refused to study the disease adequately."

We're delighted," said Judy A. Mikovits, the lead researcher at the Whittemore Peterson Institute. "This is the first group that attempted to replicate the study using our methods." She said her group would present additional positive findings at a meeting in Washington in two weeks."

"The key difference in the new study is that the government team found viruses that appeared to be polytopic. That is, they can replicate in more than one species, including mice and humans. The original virus isolated in Nevada was xenotopic — it could grow in humans but not in mice."

CDC - Questions & Answers - XMRV

Thanks to Mac Angel for finding this new web page

CDC - Questions & Answers - XMRV

More from CFIDS.org

CFIDS

Another Turn of the Retrovirus Kaleidoscope

CFIDS

More Evidence Virus Plays Role in Chronic Fatigue Syndrome

Andrea Whittemore: 105 Articles Educating The World !!!!

Andrea Whittemore:
‎105 Articles Educating The World !!!!

http://news.google.com/news/i/story?client=internal-mobilefe&q=xmrv&oe=UTF-8&num=10&sniplen=135&hl=en&safe=images&mboost=3&prbxpltfm=highend_mobile&near=Reno%2C+NV&ip=166.205.139.52&um=1&ie=UTF-8&ncl=dyVYo8HSVVKrBmMSM0hUTDOShATQM&ei=Fe5yTIDQJ4T0swOltNmqDQ&sa=X&oi=news_result&ct=more-results&resnu...m=1&ved=0CAsQqgIwAA

New Hope in Fight of Chronic Fatigue - WSJ.com

Anthony L. Komaroff of Harvard Medical School, an author of the latest study, said one explanation may be that the patients used in the new study were chosen because they were very sick. Patients in other studies "are a very different group of people than the ones that knock on my door,'' he said.

New Hope in Fight of Chronic Fatigue - WSJ.com

XMRV in NYT

Study Links Chronic Fatigue to Virus Class

By DAVID TULLER

Published: August 23, 2010

When the journal Science published an attention-grabbing study last fall
linking chronic fatigue syndrome to a recently discovered retrovirus, many
experts remained skeptical - especially after four other studies found no
such association.

Now a second research team has reported a link between the fatigue syndrome
and the same class of virus, a category known as MRV-related viruses. In a
paper published Monday by The Proceedings of the National Academy of
Sciences, scientists found gene sequences from several MRV-related viruses
in blood cells from 32 out of 37 chronic-fatigue patients but only 3 of 44
healthy ones.

The researchers did not find XMRV, the specific retrovirus identified in
patients last fall. But by confirming the presence of a cluster of
genetically similar viruses, the new study represents a significant advance,
experts and advocates say.

"I think it settles the issue of whether the initial report was real or
not," said K. Kimberly McCleary, president of the CFIDS Association of
America, the leading organization for people with chronic fatigue syndrome.

Leonard A. Jason, a professor of psychology at DePaul University and a
leading researcher on the syndrome, agreed. "This class of retroviruses is
probably going to be an important piece of the puzzle," he said.

Chronic fatigue syndrome, estimated to afflict at least one million
Americans, has no known cause and no accepted diagnostic tests, although
patients show signs of immunological, neurological and endocrinological
abnormalities. Besides profound exhaustion, symptoms include sleep
disorders, cognitive problems, muscle and joint pain, sore throat and
headaches.

The new paper, by researchers from the National Institutes of Health, the
Food and Drug Administration and Harvard Medical School, was accepted for
publication in May. Social networks and online communities soon learned the
general findings and were eagerly awaiting the paper.

But in July, researchers from another federal agency, the Centers for
Disease Control and Prevention, published a study finding no XMRV or other
MRV-related viruses in patients with the syndrome. News of the conflicting
findings had led the Proceedings editors and the authors of the new paper to
delay publication for further review, and some patients expressed alarm that
important scientific information might be suppressed.

People with a diagnosis of chronic fatigue syndrome are used to hearing
scientists, doctors, employers, friends and family members dismiss the
condition as psychosomatic or related to stress or trauma, despite evidence
that it is often touched off by an acute viral illness. Many were ecstatic
at news that the second study was being published.

"We're really hoping this will blow the lid off," said Mary Schweitzer, a
historian who has written and spoken about having the illness. "Patients are
hopeful that now the disease itself might be treated seriously, that they'll
be treated seriously, and that there might be some solution."

The senior author of the new paper, Dr. Harvey J. Alter, an
infectious-disease expert at the National Institutes of Health, said he was
well aware of the intense interest in his findings but had been unable to
respond publicly.

"I was sympathetic to the desire of people to know, and it was difficult
because we didn't feel we could communicate with the patient community
directly until the paper was published," he said.

Retroviruses, including H.I.V., store their genetic code as RNA, convert it
to DNA and integrate themselves into the host cell's genome to replicate. At
least three antiretroviral drugs used against H.I.V. have been shown in
laboratory studies to inhibit XMRV, which has also been associated with
prostate cancer.

Some chronic fatigue patients are already trying H.I.V. medications
prescribed "off label." One patient, Dr. Jamie Deckoff-Jones, a physician in
Santa Fe, N.M., has been keeping a popular blog about her improving health
while taking antiretrovirals prescribed by her doctor. "I think the sickest
patients have the right to try the drugs," she commented in an e-mail.

Dr. Alter was quick to note that "it's not at all proven" that a retrovirus
causes chronic fatigue syndrome. Instead, such an infection could result
from underlying problems with the immune system.

Moreover, it remains unclear why only two research teams found evidence of
retroviruses. One reason could be that different groups used varying testing
and detecting methods; federal health officials have organized an effort to
standardize the process.

The studies also used different methods of sampling chronic fatigue
patients. Many experts and researchers argue that the C.D.C.'s strategy
leads to overdiagnosis because it fails to fully distinguish the disease
from psychiatric disorders like depression.

Officials with the agency say their methods are sound. William M. Switzer, a
microbiologist who was the lead author of the agency's paper, said of the
new research, "These are very intriguing findings that need to be
confirmed."

The findings are sure to raise concerns about the safety of the blood
supply. AABB, formerly known as the American Association of Blood Banks,
recommended in June that people with the illness be discouraged from
donating, pending further study.

"The possibility that these agents might be blood-transmitted and pathogenic
in blood recipients warrants extensive research investigations," Dr. Alter
and his co-authors wrote in the new study.

Judy A. Mikovits, the senior author of the Science paper, said she hoped to
organize clinical trials of antiretrovirals by the end of the year, noting
that they could lead to answers about whether a retrovirus causes the
disease as well as to effective treatments. (Dr. Mikovits is director of
research at the Whittemore Peterson Institute for Neuro-Immune Disease at
the University of Nevada, Reno, which collaborated on the XMRV study with
the National Cancer Institute and the Cleveland Clinic.)

Cara Miller, a spokeswoman for Gilead, which makes one of the H.I.V. drugs
tested against XMRV, said the company was interested but proceeding
cautiously. "We are tracking this evolving field," she wrote in an e-mail,
"and will continue to evaluate future research possibilities."

Ted Nilson

XMRV in WSJ

http://online.wsj.com/article/SB100014240527487038466045754

HEALTH INDUSTRY AUGUST 23, 2010, 4:22 P.M. ET
WALL STREET JOURNAL

Study Finds Retroviruses in Chronic Fatigue Sufferers - WSJ.com

By AMY DOCKSER MARCUS
online.wsj.com
Researchers said they identified a family of retroviruses in patients with chronic fatigue syndrome, a finding that is likely to spur patients with the condition to seek treatment with drugs used to fight HIV, the virus that causes AIDS.

The report, published in the Proceedings of the National Academy of Sciences, was accompanied by a call for new clinical trials to test HIV drugs in patients with chronic fatigue syndrome, which afflicts an estimated one million to four million Americans and as many as 17 million people world-wide.

And here it is, the long-awaited paper....

Detection of MLV-related virus gene sequences in blood of patients with chronic fatigue syndrome and healthy blood donors — PN

Articles on XMRV

Biological Sciences - Medical Sciences:

Robert Schlaberg,

Daniel J. Choe,
Kristy R. Brown,
Harshwardhan M. Thaker,
and Ila R. Singh

XMRV is present in malignant prostatic epithelium and is associated with prostate cancer, especially high-grade tumors PNAS 2009 106 (38) 16351-16356; published ahead of print September 8, 2009, doi:10.1073/pnas.0906922106
...Text Creating an Infectious Clone of XMRV. Overlapping partial clones AM-29 and...0906922106 2 of 7 Fig. S1. Detection of XMRV DNA in prostate tissues by a qPCR and...standard reaction containing 500 copies of XMRV proviral DNA diluted in normal prostatic...

Abstract

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Biological Sciences - Microbiology:

Harriet C. T. Groom,

Melvyn W. Yap,
Rui Pedro Galão,
Stuart J. D. Neil,
and Kate N. Bishop

Susceptibility of xenotropic murine leukemia virus-related virus (XMRV) to retroviral restriction factors PNAS 2010 107 (11) 5166-5171; published ahead of print March 1, 2010, doi:10.1073/pnas.0913650107
...We thank Robert Silverman for the VP62 XMRV clone, Michael Malim for the HA-tagged...Constructs. VP62 xenotropic MLV-related virus (XMRV) clonewasakindgiftofRobertSilverman(LernerResearchInstitute...0913650107 2 of 3 Fig. S4. Sensitivity of XMRV to murine tetherin. XMRV packaging an...

Abstract

1. Select this article
2. Biological Sciences - Microbiology:
1. Beihua Dong,
Sanggu Kim,
Seunghee Hong,
Jaydip Das Gupta,
Krishnamurthy Malathi,
Eric A. Klein,
Don Ganem,
Joseph L. DeRisi,
Samson A. Chow,
and Robert H. Silverman
From the Cover: An infectious retrovirus susceptible to an IFN antiviral pathway from human prostate tumors PNAS 2007 104 (5) 1655-1660; published ahead of print January 18, 2007, doi:10.1073/pnas.0610291104
...murine leukemia virus-related virus (XMRV), in prostate cancer tissue from patients...The assay for cloning and sequencing XMRV integration sites was essentially identical...sequence of the molecular viral clone of XMRV VP62 reported in this paper has been...

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Biological Sciences - Microbiology:

Géraldine Schlecht-Louf,

Martial Renard,
Marianne Mangeney,
Claire Letzelter,
Aurélien Richaud,
Bertrand Ducos,
Isabelle Bouallaga,
and Thierry Heidmann

Retroviral infection in vivo requires an immune escape virulence factor encrypted in the envelope protein of oncoretroviruses PNAS 2010 107 (8) 3782-3787; published ahead of print February 8, 2010, doi:10.1073/pnas.0913122107
...vector opened with the same enzymes. The XMRV Env ectodomain encoding the DNA sequence...counterpart using primer pair S13S14. The DM XMRV Env ectodomain was introduced back into...MAAVQDDLKEVEKSITNLEKSLTSLSEVVLQNRRGLDLLFLKEGGLCAALKEECCFYADHTGLV XMRV QAAIHTDLGALEKSVSALEKSLTSLSEVVLQNRRGLDLLFLKEGGLCAALKEECCFYADHTGVV...

Abstract

1. Select this article
2. Commentary:
3. - Hung Fan
A new human retrovirus associated with prostate cancer PNAS 2007 104 (5) 1449-1450; published ahead of print January 23, 2007, doi:10.1073/pnas.0610912104
...Retrovirus Breast cancer No ? XMRV Retrovirus Prostate cancer No...deduced the sequence for the virus [named XMRV for xenotropic murine leukemia virus...questions. In particular, the detection of XMRV was PCR-based, which raised the inevitable...

Extract

This Week in PNAS: In This Issue PNAS 2009 106 (38) 16005-16006; doi:10.1073/iti0938106
...murine leukemia virus-related virus (XMRV), in prostate cancers and found that...RNase L gene were more susceptible to XMRV infection than those without the variation...individuals with prostate cancer and found XMRV in 27% of cases. The virus was more...

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2. Biological Sciences - Biochemistry:
1. Chandar S. Thakur,
Babal Kant Jha,
Beihua Dong,
Jaydip Das Gupta,
Kenneth M. Silverman,
Hongxia Mao,
Hiro Sawai,
Akiko O. Nakamura,
Amiya K. Banerjee,
Andrei Gudkov,
and Robert H. Silverman
Small-molecule activators of RNase L with broad-spectrum antiviral activity PNAS 2007 104 (23) 9585-9590; published ahead of print May 29, 2007, doi:10.1073/pnas.0700590104
...images were captured by using a fluorescence microscope (DM IRB; Leica, Wetzlar, Germany). DU145 cells were infected with XMRV in FBS-free RPMI medium 1640 with 8 mug/ml polybrene for 3 h, followed by washing with PBS. Cells were treated in triplicate...

Abstract

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Biological Sciences - Microbiology:

Charles Y. Chiu,

Alexander L. Greninger,
Kimberly Kanada,
Thomas Kwok,
Kael F. Fischer,
Charles Runckel,
Janice K. Louie,
Carol A. Glaser,
Shigeo Yagi,
David P. Schnurr,
Tom D. Haggerty,
Julie Parsonnet,
Don Ganem,
and Joseph L. DeRisi

Identification of cardioviruses related to Theiler's murine encephalomyelitis virus in human infections PNAS 2008 105 (37) 14124-14129; published ahead of print September 3, 2008, doi:10.1073/pnas.0805968105

Abstract

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Christmas is coming -- make calendars as gifts!

Free Printables Calendars, Cards, Coloring Pages, and Invitations

Review of "The Sound of a Wild Snail Eating"

This is a new book written by a person with CFS.

The Sound of a Wild Snail Eating by Elisabeth Tova Bailey

Available in the United States on August 24th.
Available in the United Kingdom on September 23rd.

"It is a great pleasure for me to encourage everyone to buy and read
this book. While it seems trite to say, this book really is a triumph
of the human spirit. If you thought you understood something about
ME/CFS, read this and it is possible you will realize that you
understood very little. I learned huge amounts and want to give a
copy of [The Sound of a Wild Snail Eating] to the family of every
patient I have ever had. The writing is magnificent."
—Dr. David Bell, Lyndonville News, Volume 7, Number 2, August 2010

Bedridden by illness, Bailey is given a pot of violets which
includes, under a leaf, a wild woodland snail. As Bailey's engaging
narrative unfolds, she tells the story of her encounter with her
unexpected roommate, a Neohelix albolabris or common woodland snail.
The snail takes up residence on her nightstand and an unusual
interspecies relationship ensues. Bailey becomes intrigued by the
snail's molluscan anatomy, cryptic defenses, clear decision making
abilities, hydraulic locomotion, and mysterious courtship activities.
An astute and amused observer, Bailey offers an unexpected and
entertaining look at the curious life of this underappreciated small
animal. The Sound of a Wild Snail Eating is a remarkable journey of
survival and resilience and Bailey shows us how the natural world can
illuminate our own human existence.

A Snail Page Turner!

* * *

Amazon.com: The Sound of a Wild Snail Eating (9781565126060): Elisabeth Tova Bailey: Books

also available for Kindle

I've heard a rumor that proceeds go to medical research.

Sunday, August 22, 2010

Quantitative electroencephalographic abnormalities in fibromyalgia patients

Note: Dr. Frank Duffy, considered the "father" of the qEEG, also found significant abnormalities in the brains of CFS patients unrelated to depression as has Dr. Myra Preston. Use of the Beck Depression Inventory can be problematic if medical symptoms are misinterpreted as being symptoms of depression or symptoms represent both medical abnormalities and depression normal to having an organic disease.

Clin EEG Neurosci. 2010 Jul;41(3):132-9.

Quantitative electroencephalographic abnormalities in fibromyalgia patients.

Hargrove JB, Bennett RM, Simons DG, Smith SJ, Nagpal S, Deering DE.

Department of Medicine, Michigan State University College of Human
Medicine, Kettering University, Flint, Michigan 48504, USA.
jhargrov@kettering.edu

Abstract

There is increasing acceptance that pain in fibromyalgia (FM) is a
result of dysfunctional sensory processing in the spinal cord and
brain, and a number of recent imaging studies have demonstrated
abnormal central mechanisms.

The objective of this report is to statistically compare quantitative
electroencephalogram (qEEG) measures in 85 FM patients with age and
gender matched controls in a normative database.

A statistically significant sample (minimum 60 seconds from each
subject) of artifact-free EEG data exhibiting a minimum split-half
reliability ratio of 0.95 and test-retest reliability ratio of 0.90
was used as the threshold for acceptable data inclusion. FM subject
EEG data was compared to EEGs of age and gender matched healthy
subjects in the Lifespan Normative Database and analyzed using
NeuroGuide 2.0 software. Analyses were based on spectral absolute
power, relative power and coherence. Clinical evaluations included the
Fibromyalgia Impact Questionnaire (FIQ), Beck Depression Inventory and
Fischer dolorimetry for pain pressure thresholds.

Based on Z-statistic findings, the EEGs from FM subjects differed from
matched controls in the normative database in three features: (1)
reduced EEG spectral absolute power in the frontal International 10-20
EEG measurement sites, particularly in the low- to mid-frequency EEG
spectral segments; (2) elevated spectral relative power of high
frequency components in frontal/central EEG measurement sites; and (3)
widespread hypocoherence, particularly in low- to mid-frequency EEG
spectral segments, in the frontal EEG measurement sites.

A consistent and significant negative correlation was found between
pain severity and the magnitude of the EEG abnormalities. No
relationship between EEG findings and medicine use was found.

It is concluded that qEEG analysis reveals significant differences
between FM patients compared to age and gender matched healthy
controls in a normative database, and has the potential to be a
clinically useful tool for assessing brain function in FM patients.

* * *

I'll add to the above note that my chiropractor uses a computer-scored bubble test but does not rely exclusively on the totals. He went back to my answers and noted that the reason the computer said I'm depressed is because I answered Yes to questions on the Depression scale that have matching questions scored under the Pain scale. Remove "I can't do the things I enjoy" because it's the same question as "I can't do things I enjoy because of pain", and other such almost-identical questions, and I got a zero for depression.

Unfortunately, most doctors either don't know enough about the test to realize that or don't take the extra time to review the answers, only the computer-generated scores, so they may wrongly be treating you for depression when you're not depressed at all.

There are times you may need to argue with a doctor. This is one of them. Know what symptoms occur in CFS/fibro that don't occur in depression, and keep pressing him on those symptoms. "Since when does depression cause a rash?" "If I have fever/swollen glands/etc., doesn't that prove there's a physical illness at work, not just depression?" And if he keeps insisting all you need is counseling and Prozac, find another doctor and tell the first one why!

Tai Chi Reported to Ease Fibromyalgia

http://nyti.ms/9sILWv

Tai Chi Reported to Ease Fibromyalgia
The New York Times

By PAM BELLUCK
Published: August 18, 2010

The ancient Chinese practice of tai chi may be effective as a therapy for fibromyalgia, according to a study published on Thursday in The New England Journal of Medicine.

A clinical trial at Tufts Medical Center found that after 12 weeks of tai chi, patients with fibromyalgia, a chronic pain condition, did significantly better in measurements of pain, fatigue, physical functioning, sleeplessness and depression than a comparable group given stretching exercises and wellness education. Tai chi patients were also more likely to sustain improvement three months later.

"It's an impressive finding," said Dr. Daniel Solomon, chief of clinical research in rheumatology at Brigham and Women's Hospital in Boston, who was not involved in the research. "This was a well-done study. It was kind of amazing that the effects seem to carry over."

Although the study was small, 66 patients, several experts considered it compelling because fibromyalgia is a complex and often-confusing condition, affecting five million Americans, mostly women, according to the Centers for Disease Control and Prevention. Since its symptoms can be wide-ranging and can mimic other disorders, and its diagnosis depends largely on patients' descriptions, not blood tests or biopsies, its cause and treatment have been the subject of debate.

"We thought it was notable that The New England Journal accepted this paper, that they would take fibromyalgia on as an issue, and also because tai chi is an alternative therapy that some people raise eyebrows about," said Dr. Robert Shmerling, clinical chief of rheumatology at Beth Israel Deaconess Medical Center in Boston, co-author of an editorial about the study.

"Fibromyalgia is so common, and we have such a difficult time treating it effectively. It's defined by what the patient tells you," he added. "It's hard for some patients' families and their doctors to get their head around what it is and whether it's real. So, that these results were so positive for something that's very safe is an impressive accomplishment."

Recent studies have suggested that tai chi, with its slow exercises, breathing and meditation, could benefit patients with other chronic conditions, including arthritis. But not all of these reports have been conclusive, and tai chi is hard to study because there are many styles and approaches.

The fibromyalgia study involved the yang style of tai chi, taught by a Boston tai chi master, Ramel Rones. Dr. Solomon and other experts cautioned that bigger studies with other masters and approaches were necessary.

Still, patients, who received twice-weekly tai chi classes and a DVD to practice with 20 minutes daily, showed weekly improvement on an established measurement, the Fibromyalgia Impact Questionnaire, improving more than the stretching-and-education group in physicians' assessments, sleep, walking and mental health. One-third stopped using medication, compared with one-sixth in the stretching group.

Dr. Chenchen Wang, a Tufts rheumatologist who led the study, said she attributed the results to the fact that "fibromyalgia is a very complex problem" and "tai chi has multiple components — physical, psychological, social and spiritual."

The therapy impressed Mary Petersen, 59, a retired phone company employee from Lynn, Mass., who said that before participating in the 2008 study, "I couldn't walk half a mile," and it "hurt me so much just to put my hands over my head." Sleeping was difficult, and she was overweight. "There was no joy to life," she said. "I was an entire mess from head to foot."

She had tried and rejected medication, physical therapy, swimming and other approaches. "I was used to being treated in a condescending manner because they couldn't diagnose me: 'She's menopausal, she's crazy.' "

Before the study, "I didn't know tai chi from a sneeze," said Ms. Petersen, who has diabetes and other conditions. "I was like, 'Well, O.K., I'll get to meet some people, it will get me out of the house.' I didn't believe any of it. I thought this is so minimal, it's stupid."

After a few weeks, she said she began to feel better, and after 12 weeks "the pain had diminished 90 percent." She has continued tai chi, lost 50 pounds and can walk three to seven miles a day.

"You could not have convinced me that I would ever have done this or continued with this," she said. "I wouldn't say it's a cure. I will say it's an effective method of controlling pain."

Dr. Shmerling said that though tai chi is inexpensive compared with other treatments, some patients would reject such an alternative therapy. And Dr. Gloria Yeh, a Beth Israel Deaconess internist and co-author of the editorial, said others "will say, 'It's too slow, I can't do that.' "

But she said it offered a "gentler option" for patients deterred by other physical activities. "The mind-body connections set it apart from other exercises," she said, adding that doctors are seeking "anything we can offer that will make patients say 'I can really do this.'"
A version of this article appeared in print on August 19, 2010, on page A16 of the New York edition.

Proof That a Gut-Wrenching Complaint -- Irritable Bowel Syndrome -- Is Not in Yo

Proof That a Gut-Wrenching Complaint -- Irritable Bowel Syndrome -- Is Not in Your Head

http://www.sciencedaily.com/releases/2010/08/100819141950.htm

ScienceDaily (Aug. 20, 2010) — Irritable bowel syndrome makes life
miserable for those affected -- an estimated ten percent or more of
the population. And what irritates many of them even more is that they
often are labeled as hypochondriacs, since physical causes for
irritable bowel syndrome have never been identified.

Now, biologists at the Technische Universitaet Muenchen (TUM) have
shed new light on the matter: They have discovered mini-inflammations in the mucosa of the gut, which upset the sensitive balance of the bowel and are accompanied by sensitization of the enteric nervous system.

Flatulence, constipation and diarrhea, nausea and stomach cramps:
Irritable bowel syndrome (IBS) can turn digestion into a nightmare.
Frequent visits to the bathroom are often accompanied by sleep
disturbances, headaches, and backaches. In Germany alone, some seven
million people are affected by the disorder -- and by the fact that
their irritable bowel syndrome is often deemed psychosomatic. This is
because the organic trigger of the disease has never been discovered,
and consequently the various therapeutic interventions are
disappointing for both the patients and their doctors. That may soon
change, however, because now, for the first time, biologists in Munich
have nailed down hidden physical causes of this bowel disorder.

Professor Michael Schemann's research team at the TUM Department for
Human Biology has managed to demonstrate that micro-inflammations of
the mucosa cause sensitization of the enteric nervous system, thereby
causing irritable bowel syndrome. Using ultrafast optical measuring
methods, the researchers were able to demonstrate that mediators from
mast cells and enterochromaffin cells directly activate the nerve
cells in the bowel. This hypersensitivity of the enteric nervous
system upsets communication between the gut's mucosa and its nervous
system, as project leader Prof. Schemann explains: "The irritated
mucosa releases increased amounts of neuroactive substances such as
serotonin, histamine and protease. This cocktail produced by the body
could be the real cause of the unpleasant IBS complaints."

The TUM researchers in human biology are blazing a trail as they
follow this lead. Their current focus is to what extent nerve
sensitization correlates with the severity of symptoms. Working with
colleagues from Amsterdam, they have already substantiated the
clinical relevance of their results: Irritable bowel symptoms improved
after treatment with an antihistamine known for its immune-stabilizing
effect in the treatment of allergic reactions such as hay fever.
Thanks to funding from the German Research Foundation (DFG), the
scientists are now investigating whether the improved symptoms are
accompanied by a normalization of nerve activity.

Successful identification of the active components could enable the
development of effective drugs to treat irritable bowel syndrome. Even
now, though, the TUM team have made life easier for many IBS patients,
in that they have shown that the chronic disorder does have physical
causes and is not merely "in their heads."

--------------------------------------------------------------------------------

Story Source:

The above story is reprinted (with editorial adaptations by
ScienceDaily staff) from materials provided by Technische Universitaet
Muenchen.

--------------------------------------------------------------------------------

Journal References:

Sabine Buhner, Qin Li, Sheila Vignali, Giovanni Barbara, Roberto De
Giorgio, Vincenzo Stanghellini, Cesare Cremon, Florian Zeller, Rupert
Langer, Hannelore Daniel. Activation of Human Enteric Neurons by
Supernatants of Colonic Biopsy Specimens From Patients With Irritable
Bowel Syndrome. Gastroenterology, 2009; 137 (4): 1425 DOI:
10.1053/j.gastro.2009.07.005
http://dx.doi.org/10.1053/j.gastro.2009.07.005

T. K. Klooker, B. Braak, K. E. Koopman, O. Welting, M. M. Wouters, S.
van der Heide, M. Schemann, S. C. Bischoff, R. M. van den Wijngaard,
G. E. Boeckxstaens. The mast cell stabiliser ketotifen decreases
visceral hypersensitivity and improves intestinal symptoms in patients
with irritable bowel syndrome. Gut, 2010; DOI: 10.1136/gut.2010.213108
http://dx.doi.org/10.1136/gut.2010.213108

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