Dr Nancy Klimas* lecture & slide presentation: **XMRV CFS/ME & You**.
A compelling and comprehensive review of the disease, the XMRV virus discussed
in detail and what lies ahead. Even the most knowledgeable in attendance gained
new insights into their illness and the prospect of a new road to recovery. A
particularly interesting Q&A session follows the formal presentation.
The two hour session garnered rave reviews from the 150 people lucky enough to
attend. It is a MUST SEE video for all afflicted with or affected by ME/CFS.
Most of the video was made in near dark conditions to accommodate the slide
presentation. It has been tightly edited down to 83 minutes and divided into 12
segments for easy, and repeated, viewing.
Segment 1: Background, overlapping conditions, viruses
Segment 2: Viruses & CFS/ME, WPI & XMRV
Segment 3: XMRV, NK & T cells, latent & retro viruses
Segment 4: Retro viruses, Biomarker
Segment 5: Antibodies, what we don't know, cancer
Segment 6: Virus life cycle, immune modulation drugs
Segment 7: What's next in research
Segment 8: Research funding & advocacy
Segment 9: Testing for XMRV, Q&A: Antibodies
Segment 10: Q&A: Drug timeline, U of M clinic & studies
Segment 11: Q&A: Morton Fund, Taking care of yourself
Segment 12: Q&A: The new Miami CFS clinic
omega 3, 4 grams a day
vitamin b complex
http://media.marketwire.com/attachments ... oard01.jpg <http://www.hhv-6foundation.org/>
Jun 23, 2008 10:00 ET
Ancient Retrovirus May Contribute to Chronic Fatigue Syndrome, Multiple Sclerosis and Autoimmunity
Smoldering Infections of Two Common Viruses EBV and HHV-6 Cause Inherited Retrovirus Genes to Activate
BALTIMORE, MD--(Marketwire - June 23, 2008) - Brigitte Huber, PhD, of the Tufts University School of Medicine, presented evidence at a medical conference that suggested that a reactivated ancient retrovirus embedded in the human genome may be active in chronic fatigue syndrome (CFS) and multiple sclerosis (MS) patients. Danish scientists at the same conference suggested that the activation of this retrovirus, dormant in healthy individuals, could be the reason why autoimmune conditions worsen with viral infections.
Chronic Fatigue Syndrome and Multiple Sclerosis Patients at Increased Risk From the Effects of HERV-K18 Activation
"Patients with profoundly fatiguing diseases such as MS and CFS may be particularly susceptible to HERV-K18 activation," said Dr. Huber. The announcement was made at the International Symposium on Viruses in CFS and Post-Viral Fatigue, a satellite conference of the 6th International Conference on HHV-6 & 7. Using an SNP-based genotyping method, Dr. Huber found that both MS and CFS patients (whose illness had been triggered by infectious mononucleosis) were at a higher relative risk for containing HERV-K18 variants known to induce superantigen activity. Superantigens are proteins that are able to induce a strong undifferentiated T-cell response believed to deplete the immune system over time.
Viral activity and/or immune activation has been shown to trigger HERV-K18 activity. Both Epstein-Barr virus infection (infectious mononucleosis) and interferon-alpha administration are associated with HERV-K18 activity. "HHV-6 activates HERV-K18 as well," said Danish investigator Per Hollsberg, MD and professor from the University of Aarhus In Denmark. His PhD student Vanda Lauridsen Turcanova presented this data at the same conference. "Furthermore, this retrovirus activation may have important consequences for autoimmunity," he added.
HERV-K18 activation may be the endpoint of an HHV6/EBV interferon pathway operating in both MS and CFS. HHV-6 is being investigated as a co-factor in both diseases. Other retroviruses, HERV-H and HERV-W, have been implicated in MS by other researchers. Over 75% of MS patients meet the criteria for CFS. Fatigue is often the most disabling symptom for MS patients. The two diseases also share characteristics such as grey matter atrophy, impaired cerebral glucose metabolism, autonomic nervous system activity and altered patterns of brain activity.
Dr. Huber's study suggests that endogenous retroviral activation in CFS and MS could produce some of the symptoms associated with both diseases. She has received a National Institutes of Health (NIH) grant to study these issues. Per Hollsberg has done extensive research on the role of EBV and HHV-6 in multiple sclerosis.
The Salt Lake Tribune
Saturday, May 8, 2010
AIDS drugs fight prostatecancer-linked virus, U. scientists say
By Simeon Bennett
Bloomberg News Service
AIDS drugs blocked a virus linked to
prostate cancer and chronic fatigue
syndrome, a study showed.
Merck's Isentress fought the virus, XMRV, more powerfully than 44 other anti-HIV compounds tested against the pathogen in laboratory experiments, according to researchers from the University of Utah and Emory University.
GlaxoSmithKline's Retrovir and Gilead Sciences's Viread also prevented XMRV from replicating, according to a statement from Emory Thursday.
XMRV was discovered in 2006 and has since been found in some prostate tumors and in the blood of people with chronic fatigue syndrome.
Researchers say its relationship with both diseases is unclear, and European studies last year failed to find the virus in chronic fatigue syndrome patients.
Tests of the drugs in patients with XMRV are needed, said Ila Singh, who led the research at the University of Utah's medical school.
*We will need to see the results of clinical trials before these drugs can be used in a clinical setting,* Singh said in the statement.
XMRV, like HIV, is a retrovirus that gets incorporated into the genome of the cells it infects. It may trigger cancer by locating in the cell's genetic material next to DNA that controls cell growth, disrupting those genes in a way that allow cells to replicate uncontrollably, Emory said in the statement.
The virus was found in 44 percent of men with the most aggressive form of prostate cancer, Singh found in a study published in September.
XMRV turned up in the blood of two- thirds of a set of tissue samples taken from people with chronic fatigue syndrome and 3.7 percent of a group of healthy individuals, according to separate research published in the journal Science in October.
Isentress is the first in a new class of AIDS medicines that halt HIV by blocking an enzyme called integrase the virus uses to insert its genetic material into the nucleus of healthy immune cells.
Merck won U.S. approval in July to sell the drug as an initial treatment for HIV patients. It was previously marketed only to patients who had failed all other therapies.
The research was published in the journal PLoS ONE, a publication of the Public Library of Science, a San Francisco-based nonprofit organization. The study was funded by Emory's Center for AIDS Research and the Department of Veterans Affairs.
Glaxo and Pfizer Inc. combined their HIV-drug units last year, with British company owning 85 percent of the resulting entity, Viiv Healthcare.
HELSINGIN SANOMAT/Jani Kaaro
Kroonisen väsymysoireyhtymän tutkimuksessa on tehty suuri läpimurto. Amerikkalaiset tutkijat ovat saaneet vahvaa näyttöä siitä, että sairauden taustalla voi olla virustartunta.
Krooninen väsymysoireyhtymä on salaperäinen sairaus, jonka oireita ovat pitkään jatkuva selittämätön uupumus, alentunut immuunivaste, alttius sairastua infektioihin, kivulloisuus ja kuumeilu. Oireet ovat niin epämääräisiä, etteivät kaikki lääkärit myönnä koko oireyhtymää olevan olemassakaan.
Whittemore Peterson -instituutin tutkijat vertailivat kroonista väsymysoireyhtymää sairastavien potilaiden dna:ta verrokkihenkilöihin. He havaitsivat, että potilaista 67 prosentilla oli XMRV-viruksen dna:ta veressään, kun verrokeilla sitä oli vain neljällä prosentilla.
HI-viruksen lailla retroviruksiin kuuluva XMRV-virus oli uutisissa pari viikkoa sitten, kun toinen tutkimusryhmä löysi yhteyden viruksen ja aggressiivisesti etenevän eturauhassyövän välillä.
Tutkimus ei osoita syy-seuraussuhdetta XMRV-viruksen ja kroonisen väsymysoireyhtymän välillä, mutta yhteys on voimakkaampi kuin viruksen ja eturauhassyövän välillä. Myös kroonisen väsymysoireyhtymän oireet, kuten alentunut immuunivaste ja alttius sairastua infektioihin, sopivat retrovirukseen. Sairauteen liittyvä uupumus voi olla seurausta siitä, että elimistö taistelee virusta vastaan.
Tutkijat ovat ymmällään XMRV-viruksen edessä, sillä tämä on toinen tutkimus lyhyen ajan sisällä, jossa saadaan selvä yhteys viruksen ja sairauden välillä. Erityisen suuri kysymys liittyy terveisiin verrokkihenkilöihin, joilla on myös havaittu virusta. Miksi se ei aiheuta oireita heille? Tutkijat eivät tiedä, mistä XMRV-virus tulee ja miten se tarttuu.
Tutkimuksesta kertoi Science
http://www.hs.fi/keskustelu/thread.jspa ... ID=3948226&
Failure to Detect the Novel Retrovirus XMRV in Chronic Fatigue Syndrome
http://www.plosone.org/article/info%3Ad ... ne.0008519
Otto Erlwein1, Steve Kaye1, Myra O. McClure1*, Jonathan Weber1, Gillian Wills1, David Collier2, Simon Wessely3, Anthony Cleare3
1 Jefferiss Research Trust Laboratories, Section of Infectious Diseases, Wright-Fleming Institute, Faculty of Medicine, Imperial College London, St Mary's Campus, Norfolk Place, London, United Kingdom, 2 Social Genetic and Developmental Psychiatry Centre, Institute of Psychiatry (King's College London) De Crespigny Park, Denmark Hill, London, United Kingdom, 3 Department of Psychological Medicine, Institute of Psychiatry, King's College London, Camberwell, London, United Kingdom
In October 2009 it was reported that 68 of 101 patients with chronic fatigue syndrome (CFS) in the US were infected with a novel gamma retrovirus, xenotropic murine leukaemia virus-related virus (XMRV), a virus previously linked to prostate cancer. This finding, if confirmed, would have a profound effect on the understanding and treatment of an incapacitating disease affecting millions worldwide. We have investigated CFS sufferers in the UK to determine if they are carriers of XMRV.
Patients in our CFS cohort had undergone medical screening to exclude detectable organic illness and met the CDC criteria for CFS. DNA extracted from blood samples of 186 CFS patients were screened for XMRV provirus and for the closely related murine leukaemia virus by nested PCR using specific oligonucleotide primers. To control for the integrity of the DNA, the cellular beta-globin gene was amplified. Negative controls (water) and a positive control (XMRV infectious molecular clone DNA) were included. While the beta-globin gene was amplified in all 186 samples, neither XMRV nor MLV sequences were detected.
XMRV or MLV sequences were not amplified from DNA originating from CFS patients in the UK. Although we found no evidence that XMRV is associated with CFS in the UK, this may be a result of population differences between North America and Europe regarding the general prevalence of XMRV infection, and might also explain the fact that two US groups found XMRV in prostate cancer tissue, while two European studies did not.
Citation: Erlwein O, Kaye S, McClure MO, Weber J, Wills G, et al. (2010) Failure to Detect the Novel Retrovirus XMRV in Chronic Fatigue Syndrome. PLoS ONE 5(1): e8519. doi:10.1371/journal.pone.0008519
Editor: Douglas F. Nixon, University of California San Francisco, United States of America
Received: December 1, 2009; Accepted: December 4, 2009; Published: January 6, 2010
Copyright: © 2010 Erlwein et al. This is an open-access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.
Funding: AC, DC and SW are partially funded by the South London and Maudsley NHS Foundation Trust/Institute of Psychiatry National Institute of Health Biomedical Resaerch Centre. The team from Imperial College is grateful for support from the NIHR Biomedical Research Centre Funding Scheme. The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript.
Competing interests: The authors have declared that no competing interests exist.
* E-mail: email@example.com
Tutkijat ovat löytäneet verestä proteiinin, alfa MSH,
jota voitaneen tulevaisuudessa käyttää kroonisen
http://www.yomiuri.co.jp/dy/national/20 ... Y03103.htm
Breakthrough made in diagnosing chronic fatigue syndrome
Researchers have discovered a protein in blood that can be used to
diagnose chronic fatigue syndrome, a breakthrough that could help
detect the ailment during physical checkups.
There are diagnostic criteria for chronic fatigue syndrome - a
disorder involving extreme fatigue of unknown cause that continues
for at least six months--that rely primarily on subjective symptoms,
but there have been no objective markers such as blood tests.
The research team led by Hiroshi Kiyama, a professor of anatomy at
Osaka City University, examined the intermediate lobes of the
pituitary glands of rats in which they induced extreme fatigue by
making them exercise for five consecutive days. They found that the
lobes excreted extraordinarily high amounts of a protein called
alpha-MSH and that alpha-MSH levels in the animals' blood also
The neurotransmitter dopamine inhibits the secretion of alpha-MSH,
but the rats' ability to produce dopamine declined as their fatigue
The group also tested the levels of alpha-MSH in the blood of 57
people diagnosed with chronic fatigue syndrome and the blood of 30
healthy people. The average level among the 37 people who had been
diagnosed with chronic fatigue syndrome less than five years before
was about 50 percent higher than the healthy people.
(c) 2010 Yomiuri Shimbun
http://www.chicagotribune.com/health/ct ... full.story
Hope outrunning science on chronic fatigue syndrome
Judy Mikovits, lead researcher at the Whittemore-Peterson Institute (David B. Parker, Reno Gazette-Journal / May 26, 2010)
Good news is rare for sufferers of chronic fatigue syndrome, so when a team of researchers reported last fall that the mysterious condition was associated with a retrovirus, it made a splash.
The paper, published in the prestigious journal Science, suggested that the virus could somehow be helping cause the disease. Drug companies expressed interest, and patients lit up the Internet with expressions of hope. One blogger posted photos of a party, complete with hats reading "I ♥ retrovirii" and a shrine to the paper's lead author, retroviral immunologist Judy Mikovits.
Nine months later, the joyous mood has soured. Five research teams trying to confirm the finding have reported in journals or at conferences that they could not find the retrovirus, known as XMRV, in patients diagnosed with chronic fatigue syndrome, casting grave doubts on the connection.
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In response, Mikovits has accused other researchers of bias and amped up efforts to sound the alarm over what she views as an epic health crisis. Invoking the world's slow response to AIDS, she warned that XMRV infection "could be the worst epidemic in U.S. history." Though her published findings address only chronic fatigue syndrome, Mikovits also has publicly linked the retrovirus to autism, atypical multiple sclerosis and other disorders.
Meanwhile, some people with chronic fatigue syndrome already are getting tested for XMRV and taking toxic drugs intended to treat the retrovirus that causes AIDS ? an idea Mikovits does not endorse but declines to oppose.
The story of XMRV and chronic fatigue syndrome is unfolding in a uniquely modern way, highlighting the clash between slow, methodical science and a plugged-in world ready to act on a single piece of information. It also puts the spotlight on a scientist whose unorthodox statements have raised eyebrows among colleagues while finding a receptive audience among patients desperate for answers.
"Right now, it is chaotic," said John Coffin of Tufts University, a retrovirus expert who co-wrote a positive commentary accompanying the Science paper. "It is not impossible that there is something fundamentally wrong with the initial study. Everything is on the table."
Mikovits, director of research at the 5-year-old Whittemore Peterson Institute for Neuro-Immune Disease in Reno, Nev., said in an interview and by e-mail that she feels her finding is being ignored by a dithering, even hostile scientific world.
Last month she spoke at the Autism One conference in Chicago about her new research on XMRV and autism ? joining a speakers lineup that included disgraced autism researcher Andrew Wakefield, who recently lost the right to practice medicine in Britain for serious professional misconduct.
Mikovits wrote in an e-mail that she realizes presenting at the conference "could destroy what is left of my career" but felt she had to accept.
"I know that presenting unpublished data will hurt me but the political attacks on the WPI and the lack of government response to a Science paper showing a new human retrovirus detected in a huge proportion of CFS patients told me that unless we do something now this could be the worst epidemic in U.S. history," she wrote. "Our continent will be like HIV Africa only worse!"
The Whittemore Peterson Institute is run by founder Annette Whittemore, a wealthy Nevadan whose daughter has chronic fatigue syndrome. Its goal is to develop treatments as well as do basic science. Mikovits, a retroviral scientist with decades of experience at the National Cancer Institute, was hired in 2006 to head the institute's research program.
In its Science paper, Mikovits' team ? which included scientists from the Cleveland Clinic and the National Cancer Institute ? reported finding evidence of XMRV infection in 67 percent of 101 chronic fatigue syndrome patients but in only a handful of people without the disorder.
"It was an incredibly proud day," Mikovits said of the paper's publication. "I got calls from around the world. Dubai, China, you name it."
For patients, such a report can seem like a long-awaited answer. But for scientists, a single paper raises questions. Are the findings correct? What do they mean? And importantly, can we confirm it?
Even the best scientists can be wrong. Findings must be tested and confirmed by other researchers before they can be trusted. And that has yet to happen for XMRV and chronic fatigue syndrome.
"Extraordinary claims require extraordinary proof," said Dr. Pat Moore, director of the cancer virology program at the University of Pittsburgh Cancer Institute and the co-discoverer of two viruses that cause cancer. "It's important in cases that have a lot of clinical implications like this, where there are a lot of people desperate for an answer."
Other pathogens ? Epstein-Barr virus, human herpesvirus-6, the retrovirus HTLV-II ? have been fingered in the past as possible causes of chronic fatigue syndrome, but none has stuck. Proving that a retrovirus causes a specific disease is especially difficult, experts note. And contamination in the lab, which is always possible and challenging to detect, can wildly skew results.
"Once you start having contamination, then whatever disease you look at, you will find an association," said British retrovirologist Robin Weiss.
His lab published evidence for a new human retrovirus, but it turned out that his lab had been contaminated with a rabbit virus instead. "It took four years to work out," he said. "It was a bit embarrassing."
Mikovits called the contamination issue "a red herring."
"Contamination? Absolutely not," said Mike Hillerby, vice president of the Whittemore Peterson Institute.
The team's paper was closely examined by peer reviewers looking for evidence of contamination, Hillerby and Mikovits said, and the researchers also found evidence of an immune response to XMRV, something they said would not occur in a contamination situation.
Mikovits said other research teams may not be finding XMRV in chronic fatigue syndrome patients because they are not doing the experiments in the same way as the institute.
In January the Reno Gazette-Journal quoted her as saying one British team had "skewed" its study design to avoid finding XMRV in patient samples. "Some are not trying in completely good faith," she said in an interview with the Tribune.
Dr. Jos W.M. van der Meer of Radboud University Nijmegen Medical Centre in the Netherlands, a co-author of one of the studies that failed to replicate the findings, told the Tribune: "I don't like these kinds of fights. I would prefer to have scientific debates on the scientific level."
Driven by what she says is the urgent need for action on XMRV, Mikovits has publicly tied the retrovirus to disorders including atypical multiple sclerosis ? though she has not published data supporting these claims.
Mikovits said she accepted an invitation to speak at Autism One to help sound the alarm. She accused researchers and government agencies of being more interested in previously published research linking XMRV and a form of prostate cancer than in her work. Chronic fatigue syndrome affects women at four times the rate of men, according to the Centers for Disease Control and Prevention.
"So research dollars will go for XMRV infected men with cancer but not women with CFS," she wrote in an e-mail. "(This) left me no recourse but to play the autism card! Will they ignore the children too?"
Virologist Vincent Racaniello of Columbia University said raising an alarm about XMRV would be premature given how little is known about the retrovirus.
"Her claim has to be validated," Racaniello said. "Otherwise, not only is money wasted, but people can be harmed, physically and psychologically."
Dr. Jamie Deckoff-Jones, a physician in Santa Fe, N.M., and her daughter both suffer from chronic fatigue syndrome and have been taking AZT, raltegravir and tenofovir. Deckoff-Jones said she is aware of the risks but feels ready to accept them.
"I am still a scientist at heart," she wrote in an e-mail. "But life sometimes forces leaps of faith."
Deckoff-Jones, whose blog about her treatment includes dosages, said other people interested in trying anti-retrovirals have contacted her. "Some of us simply don't have the time to wait," she said.
Mikovits said she neither opposes nor endorses people's experiments with anti-retroviral drugs. But, she said, the Whittemore Peterson Institute is helping some physicians monitor some patients' therapy.
She said she hopes her work can help chronic fatigue syndrome sufferers avoid risky, unproven treatments. "We want to bring this out of the barbaric age by doing real science," she said.
Dr. Paul Sax, clinical director of the HIV Program and Division of Infectious Diseases at Brigham and Women's Hospital in Boston, said he has "tremendous sympathy" for people with the disorder. "No wonder they are looking for both a cause and a treatable cause at that," he said.
But, Sax said, the three drugs Deckoff-Jones is using can have serious risks that are considered a reasonable risk to people with HIV because the alternative is death from AIDS. Potential side effects include kidney damage, anemia, muscle problems and damage to the energy-producing centers of cells.
"This is not the way to answer the question of whether these meds can help people," Sax said. "HIV therapy did have some stops and starts along the way, and we learned the hard way about these medicines in being overeager."
About chronic fatigue syndrome
People with chronic fatigue syndrome suffer from crippling, unexplained fatigue that persists for longer than six months.
Other symptoms include painful joints, impaired memory, incessant muscle pain, headaches, tender lymph nodes and sore throat.
No lab test exists to diagnose the disorder, and there are no federally approved pharmaceuticals for it, though physicians can work to alleviate symptoms.
An estimated 1 million to 4 million people in the U.S., most of them women, have the condition, according to the U.S. Centers for Disease Control and Prevention.
The cause of the disease is unknown. The retrovirus XMRV is the latest pathogen to be identified as a possible factor, but research is continuing.