- Hello all from Joseph J. Burrascano Jr, MD
I just returned from the first official scientific symposium of the
Whittemore-Peterson Institute on the topic of XMRV.
- We formed a working group to be in constant touch and we plan to
meet regularly because advances are coming so rapidly.
- Big news that everyone should know and adopt is that we have
proposed a name change for the virus.
- This virus is a human, not mouse virus, and it is the first and
so far only gamma-retrovirus known to infect people. Also, it is
clearly not an "endogenous" retrovirus (one that is present in all
genomes due to ancient infection).
- Because of all of this, and because of the desire to begin on
the right track, the new name of the virus is HGRV- Human Gamma
Retro Virus. The illness caused by this infection is named HGRAD-
Human Gamma Retrovirus Associated Disease.
- We plan to announce this at the upcoming NIH retroviral
conference this September.
- Definitely stay tuned- the volume of new and important
information about this virus and its disease associations is
increasing rapidly and in my opinion should be a concern to every
patient with chronic neuro-immune diseases, including those with
Chronic Fatigue to Virus Class
Article Published in the NY TImes
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 MLV-related viruses
In a paper published Monday by The Proceedings of
the National Academy of Sciences, scientists found gene sequences
from several MLV-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 MLV-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
“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
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
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
Read this article with links on the New Your Times website
- Past NY Times articles on this subject