May 12th: Celebrating Sixteen Long Years!
May 12th: Celebrating Sixteen Long Years!
Leaders in the Name Change Movement and Originators of:
Sign The
Petition for
the Recognition of
Myalgic Encephalomyelitis
Accomplished singer, song writer and musician Susan Wenger,
of the band Cinder Bridge, has generously donated a song about M.E. to R.E.S.C.I.N.D.
Please follow this link to learn more:
Prime Time Live story on Chronic Fatigue Syndrome circa 1996
The video is a VHS copy of a copy and well viewed. Please excuse the quality.
Video for broadband internet services
Video for dial up internet services
Myalgic Encephalomyelitis: The shocking disease
Just explaining the basic facts of M.E.falls
far short of really getting
across what a hell on earth M.E. really is. In thinking about M.E. and all
of the terrible things that are happening so unfairly to so many wonderful
innocent people year after year, and how extremely severe a disease it can
be physically, many of us keep coming back to one word. Shocking. Above all
else, M.E. is a shocking disease. Jodi Bassett explains in this paper why
M.E. is THE shocking disease.
"Who was dragged down by the stone..."
As posted to Co-Cure By K. Kimberly McCleary
President & CEO
The CFIDS Association of America
The U.S. Centers for Disease
Control and Prevention (CDC) has announced
that Dr. William C. Reeves, head of the agency's CFS Research Program,
will be taking a new position within the agency effective Feb. 14, 2010
and that he will no longer lead the agency's CFS research. Dr.
Elizabeth Unger will serve as acting chief of the Chronic Viral
Diseases Branch, the unit within CDC that houses the CFS Research
Program. On Feb. 14, Dr. Reeves will begin an assignment as Senior
Advisor for Mental Health Surveillance in the Public Health
Surveillance Program Office within the CDC's Office of Surveillance,
Epidemiology, and Laboratory Services.
Some musings...
It seems that most, if not the entire, CDC is being re-organized. So did they really hear us calling for Reeve's head or is this just routine house cleaning by the new administration?
Could the CDC's XMRV studies be producing positive results and they are removing Reeves and his psychobabble and putting a scientist in place, Elizabeth Unger, with expertise in cancer causing viruses (HPV) albeit she is, for now, "acting chief?"
Could the CDC's XMRV studies be producing negative results and Reeves move to Mental Health Surveillance in the Public Health Surveillance Program Office be just another step into bringing M.E. under the umbrella of Mental Health?
I would hope that bringing in someone like Elizabeth Unger, even though she is named as a minor author on some of the CDC's psychobabble publications, is a clue that a viral or infectious cause is finally being accepted at the CDC.
If the CDC is finding XMRV in their studies and focusing on
that, what will happen to those who do not have the virus (if any)? Will the CDC
keep looking at infectious agents or will these patients follow Reeves into the
mental health quagmire?
Dr. Nancy Klimas as quoted from the
Q & A New York Times article Is a Virus the
Cause of Fatigue Syndrome? - posted online Oct 15, 2009
"But I hope you are not saying that C.F.S. patients are not as ill as H.I.V.
patients. My H.I.V. patients for the most part are hale and hearty thanks to
three decades of intense and excellent research and billions of dollars
invested. 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.
I split my clinical time between the two illnesses, and I can tell you if I
had to choose between the two illnesses (in 2009) I would rather have H.I.V."
Dr. Marc Loveless as quoted by Tom Hennessy from
A Brief History of the Name
Change Movement
http://www.rescindinc.org/history.htm
Dr. Shelekov looked puzzled and maybe a little skeptical.
But Dr. Marc Loveless, sitting next time to him said,
"Dr. Shelekov, this man (meaning me) is telling you the truth.
I have treated more than 2500 AIDS and CFS patients over
the past 12 years. and my CFS patients are MORE sick and
MORE disabled, every single day, than my AIDS patients are,
except in the last two weeks of life!"
I immediately said to Dr. Loveless that "YOU have to use
that line in every speech you give on this illness for the
rest of your life!" (in 1994, Dr. Loveless gave this same
testimony under oath to the US Congress).
October 9, 2009: Detection
of an Infectious Retrovirus, XMRV, in Blood Cells of Patients with Chronic
Fatigue Syndrome (Science)
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.
October 9, 2009 New York Times
Virus Is Found in Many With Chronic Fatigue Syndrome
!
By DENISE GRADY
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."
NIH/National Cancer
Institute Press Release
Consortium of Researchers Discover Retroviral Link to Chronic Fatigue Syndrome
Hey Bill, your fly is open...
Published online 8 October 2009 | Nature |
doi:10.1038/news.2009.983
Virus linked to chronic fatigue syndrome
Prostate cancer pathogen may be behind the disease once dubbed 'yuppie flu'.
Lizzie Buchen
A study on chronic fatigue syndrome (CFS) has linked the mysterious and
controversial disease to a recently discovered retrovirus. Just last month
researchers found the same virus to be associated with aggressive prostate
tumours.
Chronic fatigue syndrome is seen as a serious but poorly defined disease.
PUNCHSTOCKCFS is marked by debilitating exhaustion and often an array of other
symptoms, including memory and concentration problems and painful muscles and
joints. The underlying cause of the disease is unknown; it is diagnosed only
when other physical and psychiatric diseases have been excluded. Though the
disease's nebulous nature originally drew scepticism from both doctors and the
general public, most of the medical community now perceives it as a serious if
poorly defined disease.
Now Judy Mikovits of the Whittemore Peterson Institute for Neuro-Immune Disease
in Reno, Nevada, and her colleagues think they have discovered a potential
pathogenic link to CFS. In patients with the disease from different parts of the
United States, 67% were infected with a retrovirus known as XMRV. Less than 4%
of controls carried the virus.
"I can't wait to be able to tell my patients," says Mikovits, who is also the
vice president of drug development for Genyous Biomed in Henderson, Nevada.
"It's going to knock their socks off. They've had such a stigma. People have
just assumed they were just complainers who didn't handle stress well."
Prostate puzzle
CFS researchers have long had their eyes on retroviruses. A number of the
symptoms, including fatigue and cognitive dysfunction, can occur when the immune
system is dealing with a viral infection, and the disease is often preceded by a
flu-like illness. Although a number of retroviruses have been hypothesized to
play a role in CFS, none has ever been confirmed.
About three years ago Robert Silverman, a biologist at the Cleveland Clinic
Foundation in Ohio and a coauthor of the new study, discovered a previously
unknown retrovirus, XMRV, while searching for a pathogen that might contribute
to prostate cancer. The retrovirus was very similar to MLV, a group of viruses
that can cause cancer and neurological and immunological diseases in mice.
Silverman found XMRV in a subset of prostate tumours, and more recent research
found a stronger correlation between XMRV and aggressive prostate tumours1,2.
Mikovits asked Silverman to analyze the blood samples of 101 CFS patients and
218 healthy controls. The authors detected XMRV DNA in the immune cells of 67%
of the CFS patients but in only 3.7% of healthy controls. The authors also
showed that the virus was able to spread from infected immune cells to cultured
prostate cancer cells and that the virus's DNA sequence was more than 99%
similar to the sequence of the virus associated with prostate cancer. The
findings were published in Science3.
"It's scary," says Mikovits. "But it's cool. Hopefully this will finally make
people change their attitudes to this disease."
Mikovits believes the association may be even stronger than the present work
indicates. DNA sequencing only picks up active infections, she says, so she
wants to study CFS exposure to the virus more broadly. In an unpublished
investigation, she and her colleagues analyzed blood cells in about 330 CFS
patients and found that more than 95% expressed antibodies to XMRV, whereas
about 4% of healthy controls did.
Controversial connection
Although Mikovits acknowledges that it's premature to suggest a causal link
between XMRV and CFS, she thinks it makes sense. Chronic XMRV infection in
immune cells could cause them to churn out inflammatory cytokines, which are
observed in some CFS patients, she says. Mikovits also points out that the MLV
coat protein can disrupt red blood cells in mice, leading to low blood oxygen
levels.
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.
XMRV presents its own puzzle. John Coffin, a virologist at Tufts University in
Boston who has studied MLV, points out that the virus's prevalence in healthy
controls "is, in some ways, an equally striking result".
"It's highly preliminary, but if it's in fact representative, then there are 10
million Americans with this infection, which is very similar to MLV and is now
linked to two important diseases," says Coffin. "There's a lot we don't know,
including whether XMRV causes disease, but that's always the case when the first
paper, like this one, comes out."
References
1.Schlaberg, R. et al. Proc. Natl Acad. Sci. USA 106, 1635116356 (2009). |
Article | PubMed | ChemPort |
2.Urisman, A. et al. PLoS Pathogens 2, e25 (2006).
3.Lombardi, V. C. et al. Science doi:10.1126/science.117052 (2009).
