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Judith Mikovits, Whittemore Peterson Institute ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ Send an Email for free membership ~:~:~:~:~:~:~:~:~:~:~:~:~:~:~...
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Posts tonen met het label Chronic Fatigue. Alle posts tonen
Posts tonen met het label Chronic Fatigue. Alle posts tonen
donderdag 7 april 2011
Blood Test for Chronic Fatigue Syndrome (CFS)
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>>>> 7 April 2011 <<<
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http://bit.ly/gq5Y39
CHRONIX BIOMEDICAL
Routine Laboratory Blood Tests for Cancer
News and Resources
Press Releases
CHRONIX BIOMEDICAL AND HEMISPHERX
BIOPHARMA JOINTLY FILE PATENT
APPLICATION FOR A BLOOD TEST FOR
CHRONIC FATIGUE SYNDROME (CFS)
—CHRONIX TECHNOLOGY FOCUSES ON
CHANGES TO CFS PATIENTS’ DNA—
— HEMISPHERX AND CHRONIX PLAN
STUDIES TO VALIDATE TECHNOLOGY
AS A POTENTIAL DIAGNOSTIC TEST
FOR CFS —
San Jose, CA March 3, 2011 – Chronix Biomedical
("Chronix") announced today that it filed a
provisional United States patent application jointly
with Hemispherx Biopharma, Inc. (NYSE Amex:HEB)
("Hemispherx") on a blood test for Chronic Fatigue
Syndrome (“CFS”).
Patients with CFS exhibit a wide range of disabling
symptoms including the inability to overcome fatigue
by rest, swollen lymph nodes and cognitive
deficiencies.
CFS is estimated to affect approximately 4 million
Americans, according to the Centers for Disease
Control and Prevention (CDC). The disorder has a
negative economic impact in the United States
estimated at more than $9 billion annually.
The Chronix experimental approach analyzes
fragments of DNA often released into the
bloodstream during the process of apoptosis or
programmed cell death.
Chronix is using its proprietary technology and
advanced DNA sequencing platforms to measure
alterations in specific regions of the chromosome,
which can be detected as distinctive “signatures” in
cell-free blood-borne DNA.
By focusing on these signatures, Chronix’s
technology can detect the presence of
disease-damaged cells in simple blood samples
without needing to biopsy diseased cells or tissues.
“Our technology - based on DNA released into the
bloodstream by dying and damaged cells - taps into
the dynamic information provided by the genomic
alterations unique to each diseased cell.
We capture what is happening to the DNA very early
in and throughout the disease process, in real time,
and patient by patient.
That’s how our approach differs from other tests that
focus on static genomic data or protein biomarkers,”
said Dr. Urnovitz.
The patient-unique signatures captured by the
Chronix technology may prove useful as a companion
diagnostic – a test that is used to help guide
treatment decisions – and to provide information
about the disease process to help pharmaceutical
companies select the most efficacious drug
candidates.
Use of the Chronix diagnostic technology in CFS will
be evaluated in a study being planned by Chronix
and Hemispherx, a leader in CFS pharmaceutical
research.
Dr. William Carter, Hemispherx CEO, commented:
“It is with great enthusiasm that we will be
conducting studies aimed at validating the utility of
the Chronix technology to identify how different
individuals can respond to Hemispherx’s
experimental drug Ampligen®.”
The Chronix Biomedical blood test for Chronic Fatigue
Syndrome is experimental in nature and has not been
evaluated by any regulatory agency. It is currently
limited to investigational use.
About Chronix Biomedical
Chronix Biomedical is pioneering a breakthrough
approach to the diagnosis, monitoring and
management of a broad range of cancers and other
conditions. It has developed proprietary technology
that measures and categorizes DNA sequences
circulating in the blood that are associated with
specific changes in disease and health status. Using
advanced genome analysis methodology, proprietary
data tools and disease-specific databases, Chronix
has demonstrated the utility of its diagnostic and
prognostic approach in a chronic neurologic disease,
in breast and prostate cancer and in multiple
myeloma. It is currently conducting studies in other
cancers. The company initially plans to offer an
Apoptotic Serum DNA testing service to cancer
clinical researchers “For Investigational Use Only” to
track disease recurrence and monitor treatment.
Chronix is headquartered in San Jose, California and
has research facilities in Germany.
About Hemispherx Biopharma
Hemispherx Biopharma, Inc. is an advanced specialty
pharmaceutical company engaged in the manufacture
and clinical development of new drug entities for
treatment of seriously debilitating disorders.
Hemispherx’s flagship products include Alferon N
Injection® (FDA approved for a category of sexually
transmitted diseases) and the experimental
therapeutics Ampligen® and Alferon® LDO.
Ampligen® is an experimental RNA nucleic acid being
developed for globally important debilitating
diseases and disorders of the immune system.
Hemispherx’s platform technology includes
components for potential treatment of various
severely debilitating and life threatening diseases.
Hemispherx has patents comprising its core
intellectual property estate and a fully
commercialized product (Alferon N Injection®). The
Company wholly owns and exclusively operates a
GMP certified manufacturing facility in the United
States for commercial products. For more
information please visit www.hemispherx.net.
Information contained in this news release, other
than historical information, should be considered
forward-looking and is subject to various risk factors
and uncertainties. For instance, the strategies and
operations of Hemispherx involve risk of competition,
changing market conditions, change in laws and
regulations affecting these industries and numerous
other factors discussed in this release and in
Hemispherx’s filings with the Securities and
Exchange Commission. Any referenced
investigational drugs and associated technologies of
Hemispherx or Chronix are experimental in nature
and as such are not designated safe and effective by
a regulatory authority for general use and are legally
available only for investigational use. The
forward-looking statements represent Hemispherx’s
and Chronix’s respective judgments as of the date of
this release. Both Companies disclaim, however, any
intent or obligation to update these forward-looking
statements. The planning, completion, results or
submission of investigations do not imply that any
study product or test will ever be approved or
permitted for commercial distribution for the studied
or other treatment uses.
~~~~
zaterdag 22 januari 2011
GcMAF -Promise & Pitfalls -ME/CFS
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http://bit.ly/hReUuz
Rutts tankespinn og ME-nyheter
Det meste av det siste innen biomedisinsk forskning
pD ME
GcMAF – The promise and the pitfalls
By Rutt
21.01.11
*Gcmaf is one of the most promising, if not the
most promising drug for ME/CFS this side of
ampligen and far cheaper than ampligen.
Dr. Cheney, Dr. Kenny de Meirleir and others are
running small-scale studies with this compound
which was found by its proprietor, Dr. Yamamoto to
eradicate HIV.
Dr. De Meirleir recently announced that the combo of
gcmaf and nexavir (an immune modulator) converted
a patient from XMRV sero-positive to -negative.
I have been in contact with multiple patients,
including one XMRV-pos whom has improved
significantly from this natural compound which
stimulates macrophage activity.
The questions that remain are:
1) which source out of the three (Yamamoto, Dr De
Meirleir, BGLI in the Netherlands) has the most
potency and contains 100% human derived material
– this question can only be answered by a truly
independent lab.
2) what is the true role of VDR status in predicting
treatment outcome and which lab has the accurate
results (currently redlabs Belgium seems to produce
conflicting results with Amy Yasko’s lab)
3) what role will the FDA play? Currently shipments
of BGLI gcmaf are being held up at customs, yet
patients are biting the bullet and ordering in hopes
their shipment will slip through the cracks. As if
patients haven’t been skewered financially enough.
In my own opinion, this drug holds so much promise
not only in terms of results but in terms of method
of action.
It triggers innate immunity so it is unlikely to lead to
viral resistance, superbugs, or the viral biofilms that
were announced in sciencedaily this morning.
Bacterial biofilms developed theoretically due to
rampant antibiotic use. Life will find a way, and
therapeutically we have a choice to try to beat the
bug into submission with WMDs like ARVs or bolster
our own immunity.
However, the caveat is, Ampligen theoretically was
supposed to stimulate our immunity to enable us to
win the war, and patients inevitably always relapsed
once they stopped the drug.
With that said, perhaps a combination of both routes
can cover the gamut, which may be why some
high-profile XMRV researchers are discussing testing
terrain therapies such as peptide T, gcmaf, nexavir,
and even stem cells in combination with HAART.
With XMRV, it is far more likely than with HIV, that
reservoirs are a primary issue because it is
slow-replicating.
Therapies such as interleukins have been used to
draw HIV out of latency with varying success.
XMRV researchers will likely need to consider the
problem of drawing virus out of latency (ie stem cells
since stem cell division equals viral replication) as
well as cutting the provirus (the viral DNA integrated
into our human DNA) with methods that mimic
restriction enzyme systems which remove foreign
viral DNA from our own DNA.
Leave the provirus in there and it may trigger
oncogenes, which may be why XMRV has been found
in prostate and breast cancer.
A somewhat overlooked risk with gcmaf is that XMRV
and HIV have been found in macrophages, so taking
a macrophage-stimulator is in theory a bit like giving
your crippled bodyguard steroids to take on the guy
that did the crippling. A logical fallacy if you will, but
results speak louder than funny-looking bodyguards.
Another thing is macrophages have been found in the
temporal lobes, so triggering latent retroviruses in
the brain may be a recipe for disaster.
In the end, gcmaf is but one way to attack the virus.
I just hope we get to find out what it can really do
before the powers that be decide to intervene
because its an unpatentable substance that happens
to achieve what billions of dollars of research into
HIV drugs has failed to achieve.*
~~~~
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donderdag 20 januari 2011
XMRV presentation -Dr. Mikovits & Annette Whittemore -Part 2
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Lannie in the Lymelight
Actively pursuing a new title. Soon to read:
"The girl who healed herself of CFS and Lyme"
Wednesday, January 19, 2011
PART 2:
1/17/11
XMRV presentation by
Dr. Judy Mikovits and
Annette Whittemore
For Part 1 CLICK HERE: http://bit.ly/g6tqzB
And now back to the story of XMRV.
What do we know about XMRV?
slide 1: see below
What we know about XMRV is that it integrates into
human tissue, demonstrating that it is a human
infection.
We can confirm it is NOT an endogenous virus to
humans. It is in fact a new human retrovirus.
However, how it got into humans is still unclear at
this time. We know that XMRV expression is
stimulated by androgens(hormones), cortisol and
inflammation.
And we know that it is an envelope gene that is
highly related to xenotropic, polytropic and SSFV
MLVs. This relation, or similarity, that the XMRV
envelope has is important.
We know in the animal world that Xenotropic,
polytroips and SSFV MLVs cause neuroimmune
disease and lead to tumors.
There is information available to us in these animal
models that allow for us to make very short leaps to
humans. It is common place in science to utilize
these similarities in animal models.
These do not usually point hysterically to animal
contamination, but are considered a starting point
or, as both Whittemore and Mikovits called it, *a
bridge* for researchers.
We also know a bit more related to biomarkers
common to those with XMRV.
slide 2: see below
I’m afraid I can’t remember what ATL stands for, but
basically it’s representing a category of people with
XMRV and comparing them to uninfected.
You’ll notice extreme increase in Cytokine and
Chemokine Production.
There is also proof that XMRV infected patients have
fewer T-cell white blood cells.
slide 3: see below
There are further immune cell abnormalities for those
with XMRV.
slide 4: see below
As we’ve heard before, XMRV infected patients have
reduced Natural Killer cells. What does this actually
mean?
The CD56, the cell that manages the killing off of
bad things is significantly reduced. Therefore we
can’t fight off infection as well as a healthy
counterpart.
The CD19, which creates B cells is severely reduced.
The CD19 is related to our production of immature
CD20, which has a direct correlation with tumors.
Mikovits did note some reported success published in
regards to Rituxan, a chimeric monoclonal antibody
against the protein CD20, which is primarily found on
the surface of B cells.
Rituximab is used in the treatment of many
lymphomas, leukemias and transplant rejection. It
has also been used off label for numerous
autoimmune disorders such as Rheumatoid Arthritis,
Multiple Sclerosis and Lupus to name just a few.
The last note is very important, XMRV infected
patients have clonal populations of gd T-cells. This is
important, as look at the next slide…
slide 5: see below
This slide depicts 20 CFS patients, all XMRV+(less 3
not tested), all Clonal TCRg positive (less 5 not
tested), and these are all of the types of
Lymphoma/cancer they have (the 3 suspicious means
they’re showing signs of early stage).
Until the team of Lombardi, Mikovits, et al, no one
had a tool to detect XMRV. This is an image of how
they perform the lab work to find XMRV results.
slide 6: see below
The top half shows the original process performed for
the Science, 2009 published research.
Mikovits spoke of step 1 was Plasma. Step 2 was
Serology. Step 3 was to culture with the XMRV
prostate cancer cell lines and then let grow for 21-42
days, varying awaiting activation.
Then Step 4, a western blot of the cultured sample.
She noted that the lab can only handle 10 samples
through each stage at a time, as this process is so
labor intensive, hence the delay in results.
The bottom half with images under *Current* is the
process they’re using and planning to have available
at VIP Dx by June 2011.
This is a new assay that cultures in 4-18 days. You
can see it is active, or ready when it turns green
(see white squares with blue and green dots).
In discussing tests, another very important take
away was that if you test positive you are positive.
If you test negative, they are not able to confirm it
is absolutely negative. Until there is further
understanding of the XMRV lifecycle, they can not
confirm this.
One last note, she mentioned that serology AND
culture were so very important to have run.
As a patient, I remember filling out the form for VIP
Dx. It is cheaper to only run serology, but that is not
recommended.
Mikovits noted *especially the sickest, get negative
antibody response, but positive culture.*
I’ll cover treatment later, but she also noted that
once some of these especially sick patients went on
antiretrovirals they were able to create an antibody
response.
Prior to, their systems were just too weak. Creating
an antibody response would cause the patient to
then also report positive on serology.
slide 7: see below
You *never see these in healthy people!* exclaimed
Mikovits. She stressed how the positives and
negatives are SO CLEAR.
You can see in this slide above, sample 1197 is
clearly negative. Yet the rest are so clearly positive.
She showed an interesting example here. I
unfortunately wasn’t quick enough with my camera to
nab the initial slide.
We first saw an initial antibody test where sample
1118 was negative. Then this slide was shown, after
more extensive culture testing, 1118 is clearly
positive.
This is where she stressed that 1118, like many,
many not specifically have XMRV, but most definitely
has an MRV.
Going back to my comment from Part 1, of the
Phylogenic Tree. There are multiple sequences these
patients can fall under. Some can even be positive
for more than one.
So where are we seeing XMRV? The disease
association seems limitless. It’s showing up in every
corner of the neuroimmune world.
slide 8: see below
One private practice shared it’s associations with
Mikovits and the WPI team. This practice started
testing its neuroimmune patients and soon found
they were treating XMRV positive patients with CFS,
Fibromyalgia, Chronic Lyme Disease, Multiple
Sclerosis, Parkinson’s Disease, ALS, the list goes on.
I think it is safe to say this is a private practice for
adults, therefore we’re not seeing the children with
autism in this example as we did with the family
profiles from Part 1 discussion.
Finally, it was noted that XMRV research has
concentrated around ME/CFS to date, but larger
studies on the presence of XMRV in these other
neuroimmune diseases are coming.
As a Chronic Lyme Disease patient, I found it very
interesting that much of this conversation seemed to
go back to Lyme again and again. During the
presentation and the Q&A session.
In the presentation they referenced a study where 65
Chronic Lyme Disease patients were tested for
XMRV, and 100% came back positive.
This was the most reactive group the WPI has seen.
That is a higher rate than ME/CFS! I thought Annette
Whittemore said it best:
*Every time we hear something new
about XMRV, we find a similar finding
within Lyme. It’s amazing!*
So now what we’ve all been waiting for. Treatments
options!!
slide 9: see below
This first slide was a reminder of the study
performed by Singh, et al in vitro.
Three antiretrovirals showed promise amongst 45
compounds and 28 drugs approved for use in
humans. Those three include Zidovudine(most know
it as AZT), Tenofovir and Raltegravir.
The study showed all two-drug-combinations showed
efficacy against XMRV in vitro.
slide 10: see below
Given those results, Dr. Brewer, an infectious
disease specialist who’s spent much of his career in
HIV but more recently in ME/CFS and XMRV, has used
2 and 3 drug combination antiretroviral treatments
with a CFS/XMRV+ patient sample of 25.
The results have been a mixed bag among the
patients on ARVs anywhere from 1-9 months.
The expected Herxheimer response occurred in some
as would be expected.
Symptom reduction has been reported, however
majority reported feeling *about the same.*
(I think it's very important to remember that these
25 patients have been on the AVRs anywhere from
1-9 months, and most likely on the shorter end of it
considering how young the AVR concept is for
XMRV...
if we think about antivirals, patients have to be on
them for much longer before they start feeling
better) Dr. Mikovits referenced Dr. Deckoff-Jones,
along with Brewer’s patients and a few others.
She has noticed a common theme of patients feeling
better around 6 months, followed by a return of all or
most symptoms. It sounds very similar to what
happens to many on antivirals.
I appreciated that she didn’t stop here however. She
went on to ask herself and her team *how can we
add immune modulating supplements to keep up the
response beyond 6 months?*
That might be the next step we see in antiretroviral
(ARV) discussion.
slide 11: see below
Next, Mikovits covered her *other thoughts* beyond
Singh’s and Brewer’s experiences/findings with ARVs.
She recognized ARVs might be part of the picture,
but they do not address the entirety.
XMRV patients are still dealing with metabolic
abnormalities including oxidative stress, glutathione
depletion and DNA hypomethylation.
The concern is that all three of these are not only
abnormalities in XMRV patients, but they all increase
viral replication.
slide 12: see below
She first discussed how the restoration of
glutathione would reduce stress on XMRV patients
remarkably.
Next, she covered the need to restore and or improve
methylation. She suggested methofolate in B12, and
specifically mentioned supplements called Deplin and
Cerefolin NAC.
When discussing Immune Modulation, Mikovits
introduced a few points that were new to me.
She sees great promise in the newer treatment
options popping up such as GcMAF, Stem Cell
Therapy and Peptide T.
However she is concerned that they may *activate
the inactive reservoir XMRV.* Meaning there could be
some XMRV in our bodies that is still dormant, but
activation of our immune system might bring them
out.
However, she didn’t stop there. She mentioned that
this might actually be a good thing. As ARVs are
more effective in HIV since HIV replicates
considerably more than XMRV, maybe one of these
will get XMRV replicating so the ARV has a job to
do.
Another area that will surely be discussed further.
She addressed Ampligen separately. This drug has
been around and documented more than the previous
three discussed.
Her comment on Ampligen was that it activates the
viruses in about 1/3 of the cases. So there again, it
could be a matter of hitting those with ARVs.
However, a little scary for those in the Ampligen
trials and are unable to take antivirals or
antiretrovirals while on Ampligen.
Net, net, more research needs to be done before she
can make recommendations on treatment as a
researcher.
Finally, what does the future look like for XMRV, and
for its patients?
slide 13: see below
The slide is pretty straight forward. It was not
hovered over for all that long. What I took away from
her discussion was that the question of being able it
isolate a polytropic was most interesting to
Mikovits.
Note this was only my opinion.
The subject I’ve stayed away from, that was
discussed intermittently, was the politics of it all.
Our government’s involvement, or lack thereof.
I’d like to close with a quote from Mikovits, when
asked about the politics and all the second guessing
that has occurred regarding her research today.
Very confidently, and quickly she retorted, *I think
the politics will go away shortly.* Period. All she
said. There was a gasp in the room, and she moved
on as if she had just said *please pass me a glass of
water.*
This leads me to believe there is a research paper on
its way to being published that will close the case on
the contamination theories, the replication theories,
and hopefully the cause/effect query.
Just my take, but she seemed pretty darn
comfortable making that statement…:
*I think the politics will go away shortly.*
All I can say to that is, let's sure hope so!
````
**Please note, Lannie is not a scientist, doctor or
treating physician. She is a patient that has taken an
interest in her own health and while doing so is
attempting to share her learnings for the larger
patient community.
These are only her opinions and take-aways. If you
feel a piece of science has been incorrectly reported,
feel free to contact Lannie with a suggested change
– via the comments section or at
lannieinthelymelight@gmail.com – Thanks!
``````````
~jan van roijen - Attention:
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Stop
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The link you requested has been identified by bit.ly
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1) Bit.ly suggests that you
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* Close your browser window
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2) Or, continue at your own risk to:
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You can click then on the long URL without any
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~~~~
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dinsdag 18 januari 2011
XMRV presentation -Dr. Mikovits & Annette Whittemore
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Lannie in the Lymelight
Actively pursuing a new title. Soon to read:
"The girl who healed herself of CFS and Lyme"
Monday, January 17, 2011
PART 1: 1/17/11
XMRV presentation by
Dr. Judy Mikovits and
Annette Whittemore
[Please note all slides have been temporarily
removed, awaiting approval from the WPI.
Thank you for your patience. Please come back to
visit soon!]
Today I attended
*Chronic Fatigue Syndrome, the XMRV Retrovirus,
and the Human MLV-related Viruses: The latest on
testing, treatments and research into XMRV and its
relationship to chronic inflammatory neuroimmune
disease, including Chronic Fatigue Syndrome,
Multiple Sclerosis, Fibromyalgia, Chronic Lyme
Disease and Cancer*
organized and hosted by Gordon Medical Associates
in Santa Rosa, CA.
Presenters were Dr. Judy Mikovits, Director of
Research, Whittemore Peterson Institute and
Annette Whittemore, President and Founder,
Whittemore Peterson Institute.
I would be curious the final headcount, but if I had
to estimate I’d guess approximately 150 people were
in attendance. Gordon Medical Associates did a
fantastic job organizing the event. It started off a
little shaky as Dr. Mikovits was stuck on a plane en
route from Reno.
However, highlighting the collaborative nature of the
WPI, Annette Whittemore took to the stage and
presented a large part of Judy’s presentation
eloquently and thoroughly – saving only the scientific
diagrams for when Dr. Mikovits arrived.
The presentation started with a bit of background on
the Whittemore Peterson Institute (WPI), including
the building itself.
The building came to be simply out of the need for
visibility and collaboration. Whittemore knew the
disease ailing her daughter was multi-systemed, and
there were many different types of specialists
required to address the research needs of CFS.
She saw many of these different types of specialists
were housed in buildings throughout the University
of Nevada-Reno.
Instinctively she knew the only way to effectively
collaborate was to be among them. That is where
the vision took hold.
She spoke of lobbying efforts to Carson City in 2005
and 2007 for funding – noting funding could only be
secured every two years.
The first WPI fundraiser was organized in 2005, this
coming year they’ll hold their 7th annual. And finally
the Whittemore family themselves made a financial
commitment. Through this three pronged approach
the Whittemore Peterson Institute, in concept and
bricks and mortar, was in fact a reality.
She talked about how in early days, when naming
the WPI as well as discussing the issue in
fundraising, she had to *lose CFS.*
She remembered to back when she used the term
CFS, it caused more confusion and doubt. This was
where the name Whittemore Peterson Institute for
Neuro-Immune Disease was born.
Taking it a step further she, along with her WPI
cohorts thought, *how could 20 different viruses
cause this one disease?*
There *must be one underlying cause.* In the
research she had performed, simply trying to help her
daughter, she saw the glaring similarities amongst
CFS, Fibromyalgia, Gulf War Syndrome, Autism,
Multiple Sclerosis, Parkinsons.
These neuro-immune dysfuctions were common in
families and in geographical cohorts. They knew they
had something very important on their hands, and
they’ve been committed to the neuro-immune cause
ever since.
Enter the detection of a brand new retrovirus, XMRV.
(Science 2009 Slide,
http://www.ncbi.nlm.nih.gov/pubmed/19815723)
As most of you know, the detection of XMRV in blood
cells of patients with CFS was first published in
Science, October of 2009.
At the time XMRV RNA/DNA was detected in 67% of
patients with CFS, XMRV protein was detected in
greater than 85% stimulated/dividing T and B cells,
and an antibody to XMRV Envelope was detected in
over 50% of CFS patients.
Exactly one year later Mikovits was published again,
after improving on original testing techniques to find
XMRV infection in 98% of the original cohort.
And then… there were critics. Some suggested
false positives due to mouse DNA contaminations.
Others suggested it wasn’t replicable, and
therefore claiming false positives.
(Disparity Slide)
Both Whittemore and Mikovits addressed the
skeptics – confidently, calmly and articulately.
Whittemore put it best when sharing what Mikovits
has many times reminded her:
*positive papers take forever – months or even
years to publish. Negative papers only take a few
weeks (to publish).*
Reasons for disparity in published results include a
high level of sequence diversity in XMRV. A simple
PCR would not recognized all the strains. And
unfortunately many labs performing the research are
not running the exhaustive 5 different tests to
confirm XMRV.
They have been found to be only running a PCR,
which is not exhaustive enough of a test.
Whittemore quotes Mikovits here again as saying:
*Not one virus has ever been discovered through
PRC,*
basically communicating the frustration - why would
they think they could easily find a brand new
retrovirus this way all of a sudden?
This is why the WPI performs a full 45 day culture on
each sample.
Mikovits also points out that these exhaustive tests
must be run as XMRV lifecycles are not known yet. It
may show up under different testing scenarios,
depending on the stage of lifecycle it’s in.
Another reason for disparity is related to cohorts.
Depending on the criteria used for CFS, the cohorts
could include patients who do not in fact have CFS.
As we all know, the weaker criteria let patients who
suffer from issues such as severe depression fall into
the CFS cohort.
Another area that must be considered is the
likelihood of disparity in the global distribution of
CFS and XMRV. Just as there is in HTLV-1, XMRV will
most likely be more prevalent in some countries than
others.
Mouse cell contamination causing false positives is
absolutely a possibility for disparity.
However, when this concern has been raised, the
argument has never been able to confirm why CFS
patients blood comes up XMRV+ (leading skeptics to
cry contamination) while the *healthy* cohort still
not result in high positives.
If in fact, there was mouse contamination, both the
CFS as well as the healthy cohort would have similar
high results of XMRV positive.
Even with skeptics galore, hope is not lost. Enter a
second study, confirming what Lumbardi, Ruscetti,
Mikovits, et all proposed in Science, October 2009.
This paper, known as the Lo/Alter for Dr. Shyh Ching
Lo and Dr. Harvey J. Alter, found MRV, closely related
to Polytropic MLV, in 86.5% of CFS patients and
6.8% of healthy controls.
(Lo, Alter slide,
http://www.pnas.org/content/early/2010/08/16/1006901107.full.pdf+html)
Again, understanding the nay-sayers to the Science
publication, the Lo/Alter team rigorously ruled out
contamination.
They are the only other study, like that published in
Science 2009, that controlled its own samples.
If samples are not pristinely maintained (i.e. some
might be frozen and thawed),
*the results will be negative,*
confirmed Mikovits.
They took their testing a step further than had been
done before. All samples used for this research were
from a cohort of CFS patients from the east coast,
some 15 years ago.
The team tracked down 9 of the patients who were
MRV positive and retested them today. All 9 were
still positive.
The question is always raised – what does MLV or
MRV have anything to do with XMRV?
Here is a picture of the Phylogenetic Tree of XMRV(P)
and Other Gammaretroviruses.
All those strains included in the arc are identifiable
and can be considered XMRV.
Mikovits mentioned since her original study published
in 2009, she has taken 100 of the CFS samples and
retested them with more sensitive testing.
30 of the original 100 have two known sequences,
not simply one. The only way to find these is through
extensive testing and cultures.
Again, why a simple PCR run by these non-successful
XMRV replication studies aren’t practicing thorough
science.
(Phylogenic Tree of XMRV slide)
Another study, unpublished, but shared with the WPI
is from the Cheney Clinic in North Carolina.
He tested a group of 47 patients, all families, with
81% positive for XMRV.
The findings in this group are astounding. The ratio
of male to female was identical.
This is NOT a woman’s disease! Half of all family
members with a CFS case are XMRV+.
And then the list goes on and on of parent/child
correlations with CFS, XMRV and Autism.
(Cheney family slide)
The WPI followed suit in their own exercise,
performing a family study with multiple
Neuroimmune Diseases.
(WPI family study slide)
In each of the 6 clusters, the top 2 are the parents
with the children underneath them.
LIGHT BLUE = FIBROMYALGIA,
DARK BLUE = CFS,
GREEN = AUTISM.
Under each shape is their XMRV result.
V= virus found in culture,
Av = antibody test,
NT=not tested
Family 1, upper left corner – One parent XMRV + for
virus by culture and XMRV + for antibody, one parent
XMRV + for the antibody. Neither parent
symptomatic. Child with Autism, XMRV + for the
virus.
Family 2, top row, middle – One parent with CFS and
XMRV+ for antibody. Two children with Autism; one
XMRV+ for virus by culture, one XMRV+ by antibody.
Family 3, upper right corner – One parent with CFS
and XMRV+ for virus by culture. Child with Autism,
XMRV+ for virus by culture.
Family 4, bottom left corner – One parent with CFS
and XMRV + for virus by culture. Two children with
Autism, both XMRV+ for virus by culture.
Family 5, bottom row, middle – One parent with CFS,
Fibromyalgia and XMRV+ by antivody. Child with
Autism, XMRV+ for virus by culture and by antibody.
Family 6, bottom right corner – One parent with CFS
and XMRV+ by antibody. Child with Autism, not
tested for XMRV.
A quick summary provided by Dr. Mikovits regarding
families. She can confirm, there is XMRV in children
under the age of 5.
To date they have confirmed XMRV in 16 of 17
families with neuroimmune disease amongst multiple
members. Finally, that more work needs to be done
to confirm pathogenesis and transmission.
````````
PART 2: Biomarkers specific to XMRV, Treatment
discussion, and The Future of XMRV
~~~~
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maandag 17 januari 2011
Dr Mikovits interview with radio KRCB
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http://on.fb.me/gaij5P
XMRV Global Action's transcript
of Dr Mikovits' interview with radio KRCB
Jan 14, 2011
By XMRV Global Action
Saturday 15 January 2011
KRCB
The content is very familiar but here's the transcript
for those of you who just can't get enough XMRV,
and are interested in what was said....
(May also save you the time of listening to it :)
Bruce Robinson for KRCB
interviews Dr. Judy Mikovits
January 14, 2011
Link: http://krcb.org/north-bay-report/
Interviewer:
A recently discovered virus called XMRV has been
associated with two very different medical
conditions.
Dr. Mikovits:
We’ve identified a new family of human retroviruses,
known as the gammaretroviruses, of which XMRV is
the first to be isolated, which we did last year, and
those are implicated now in CFS, a neurological
disease, as well as the original discovery implicated
them as playing a role in prostate cancer.
Interviewer:
That’s Judy Mikovits… she explains that this human
retrovirus, only the 3rd such virus already identified,
seems to amplify the effects of disease.
She adds that it may also come to be used as a
biological marker for the early identification of those
men most at risk for aggressive prostate cancers.
Dr. Mikovits:
The virus is present in the most aggressive types of
prostate cancer.
Right now, we take a “watch and wait” attitude
because we don’t know in which person the cancer
will kill them, and in which the cancer will be
controlled by the immune system.
But if this is a biomarker of the most aggressive
cancer, then we can have a better treatment protocol
and save millions of dollars in public health by not
treating people who don’t need treatment as early,
and really change the way we treat prostate cancer.
Association with CFS
… We have associated XMRV with a significant
portion of the cohorts throughout America, and the
group of Dr Lo and Alter at the FDA and NIH
confirmed that on the East Coast.
There have been several groups also in Spain,
Norway and Belgium where we have identified the
virus, very high numbers of CFS.
Interviewer:
… Recent research suggests that 4% or more of all
Americans may be infected with the retrovirus, which
is called that because it reverses a section of DNA.
Mikovits says those carriers can be identified with a
series of tests.
Dr. Mikovits:
We don’t know where inside the body right now is
the major reservoir of the virus, where it’s hiding.
So we test by culturing the virus out of every
patient’s blood. We also look for the immune
response, so if you’re making the antibodies to the
retrovirus, then you are infected with the retrovirus.
Interviewer:
But when there is a positive test, she adds, the
infection is there to stay.
Dr. Mikovits:
The DNA of the virus is integrated into your cells for
the life of those cells, so it is a lifelong infection.
Interviewer:
Because XMRV was only recently identified and
isolated, its possible effects and associations are
quite controversial, and they are only beginning to
be studied.
New areas of inquiry include possible associations
with Lyme Disease, breast cancer, and other cancers.
M.S.
~~~~
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zaterdag 15 januari 2011
Gluten & Gastrointestinal Symptoms -Without Celiac Disease
~~~~~~~~~~~~~~~~~~~~~
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>>>> 16 January 2011 <<<<
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~:~:~:~:~:~:~:~:~:~:~:~:~:~~
Because many ME/CFS patients suffer from *Irritable
Bowel Syndrome* (IBS), this article may be of
interest.
Personal experience:
After a strong positive H2S Urine Test [PROTEA
Biopharma - see Co-Cure: http://bit.ly/f71l6r],
a severe bowel-dysbiosis was found with a
overgrowth of H2S and d/l lactate-producing bacteria.
Also found were several intolerances: gluten,
fructose and lactose.
Immediately after the gluten-, fructose-, lactose-free
diet, I became very sick with high fever and
night sweats; which was explained as detoxification
symptoms.
I'm still busy with a long antibiotic cure.
~jan van roijen
````````
http://bit.ly/fqkJ7l
AJG
The American Journal of
GASTROENTEROLOGY
Colon/Small Bowel
(11 January 2011)
doi:10.1038/ajg.2010.487
Gluten Causes Gastrointestinal
Symptoms in Subjects Without Celiac
Disease: A Double-Blind Randomized
Placebo-Controlled Trial
Jessica R Biesiekierski, Evan D Newnham, Peter M
Irving, Jacqueline S Barrett, Melissa Haines,
James D Doecke, Susan J Shepherd, Jane G Muir
and Peter R Gibson
OBJECTIVES:
Despite increased prescription of a gluten-free diet
for gastrointestinal symptoms in individuals who do
not have celiac disease, there is minimal evidence
that suggests that gluten is a trigger.
The aims of this study were to determine whether
gluten ingestion can induce symptoms in non-celiac
individuals and to examine the mechanism.
METHODS:
A double-blind, randomized, placebo-controlled
rechallenge trial was undertaken in patients with
irritable bowel syndrome in whom celiac disease was
excluded and who were symptomatically controlled
on a gluten-free diet.
Participants received either gluten or placebo in the
form of two bread slices plus one muffin per day with
a gluten-free diet for up to 6 weeks.
Symptoms were evaluated using a visual analog
scale and markers of intestinal inflammation, injury,
and immune activation were monitored.
RESULTS:
A total of 34 patients (aged 29–59 years, 4 men)
completed the study as per protocol.
Overall, 56% had human leukocyte antigen
(HLA)-DQ2 and/or HLA-DQ8.
Adherence to diet and supplements was very high.
Of 19 patients (68%) in the gluten group, 13
reported that symptoms were not adequately
controlled compared with 6 of 15 (40%) on placebo
(P=0.0001; generalized estimating equation).
On a visual analog scale, patients were significantly
worse with gluten within 1 week for overall
symptoms (P=0.047), pain (P=0.016), bloating
(P=0.031), satisfaction with stool consistency
(P=0.024), and tiredness (P=0.001).
Anti-gliadin antibodies were not induced. There were
no significant changes in fecal lactoferrin, levels of
celiac antibodies, highly sensitive C-reactive protein,
or intestinal permeability.
There were no differences in any end point in
individuals with or without DQ2/DQ8.
CONCLUSIONS:
*Non-celiac gluten intolerance* may exist, but no
clues to the mechanism were elucidated.
``````
To read this article in full you may need to log in,
make a payment or gain access through a site
license [http://bit.ly/fqkJ7l]
~~~~
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vrijdag 14 januari 2011
Dr. Mikovits -Retrovirus Reaction
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http://bit.ly/hcYB09
bohemian.com
The Arts
01.12.11
review
Retrovirus Reaction
Dr. Judy Mikovits stirs up controversy in
neuroimmune disease community
By Leilani Clark
*If you've been sick for 10 years, 20 years, 30 years,
and you've been to all kind of doctors and you can't
seem to get well, these people are desperate to find
what might be the key to helping them,* says Tom
Klaber.
*For some of them, XMRV could be just the thing.*
Klaber, a principal at Santa Rosa consulting company
Bridge Medicine & Health, has been instrumental in
bringing Dr. Judy Mikovits to Sonoma County.
Mikovits is the lead author of a 2009 paper published
in Science Magazine showing that more than 70
percent of patients diagnosed with chronic fatigue
syndrome also tested positive for XMRV, a human
retrovirus discovered in 2006.
One of only three known retroviruses (HIV being
another), the discovery may hold the key to
unlocking the mysteries of many illnesses, including
prostrate cancer, fatigue, lymphoma, multiple
sclerosis and autism.
Like medical theatrics straight out of a Michael
Crichton novel, certain groups have challenged
Mikovits claim that strong associations can be made
between XMRV and cancer or other neuroimmune
diseases.
A study in England purported to find none of the
retrovirus in blood samples, a claim later discredited
when it was revealed that the researchers had used
an entirely different method of testing from the
original.
*[Mikovit's paper] really upset a lot of apple carts,*
says Klaber. *There were people with cherished
beliefs about the cause of chronic fatigue were not
happy. Ego, greed, prestige and power is as rampant
in academia as anywhere else.*
Klaber encourages anyone suffering from chronic or
debilitating illness to attend the public talk.
*Significant numbers of people have chronic illness
and just can't feel happy,* he says. *XMRV is
obviously playing a role for many of these people.*
Find out more about XMRV when Dr. Judy Mikovits
speaks on Monday, Jan. 17, at the Friedman Center.
4676 Mayette Ave. 2pm. Free. 707.396.5835.
Send a letter to the editor about this story
[http://bit.ly/i6nl7L]
~~~~
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donderdag 13 januari 2011
Dr. Mikovits dismayed about Private Conversation
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~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~
From: Jamie Deckoff-Jones
Re: [CO-CURE] med: XMRV+ve Patients & Retroviral Treatment
Dear Jan,
We all wish that this account was accurate, but
unfortunately it is not.
Here is a statement from Dr. Mikovits.
Would you please post?
Thank you,
Jamie Deckoff-Jones MD
Clinical Advsory Board
Whittemore Peterson Institute
``````
I am dismayed to read about a private conversation,
a portion of which has been taken out of context,
and disseminated on the internet.
My recollection is that the conversation was much
more measured than what is portrayed here.
In fact, the anecdotal response to antiretrovirals has
been mixed, though there have been some notable
successes.
The response to treatment, or lack thereof, is an
important piece of the puzzle.
I am not a clinician. I am a scientist. My enthusiasm
for antiretroviral drugs stems from (unpublished)
laboratory evidence that treatment with
antiretrovirals impacts the disease.
Although scientific convention generally requires not
discussing prepublication findings, the enormity of
the public health disaster ethically requires
suspension of these norms.
The WPI is committed to making any clinically
relevant information available. Our clinical advisory
board was formed to address this issue.
Our vision is to have a research group and clinical
group that interact to produce meaningful treatment
for patients as soon as possible.
We are doing everything in our power to open the
clinic to patients in the very near future. It is a
unique opportunity for true translational medicine,
bench to bedside to bench, and should further our
understanding of XMRV/HMRV infection in the most
direct way possible.
For the last year, I have been forced to respond to
clinical questions, because many patients have had
no one else to ask. We are making progress towards
providing physicians to answer questions about
treatment.
Judy A. Mikovits
``````````
Reference: Co-Cure http://bit.ly/gyC9xN
On Jan 7, 2011, at 6:15 PM, Jan van Roijen wrote:
> ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
> Send an Email for free membership
> ~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~
> >>>>> Help ME Circle <<<<
> >>>> 7 January 2011 <<<<
> Editorship : j.van.roijen@chello.nl
> ~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~
>
>
>
>
>
>
> Many thanks to Doctor Speedy from
>
> THE NICEGUIDELINES BLOG
>
> at: http://bit.ly/e8fuRn
>
>
> ~jvr
>
>
>
>
> ``
>
>
> http://on.fb.me/igjcnK
>
>
> XMRV positive patients
> respond to retroviral treatment!!
>
>
>
> by Jan Maverick
>
>
> Fryday 7 January 2011
>
>
>
>
> Xinnian a UK sufferer from Foggy Friends
> has given permission for me to post the
> following:
>
>
>
> *....I also spoke to Dr Mikovits for quite some time
> this evening regarding M.E patients that are
currently
> being treated for X.M.R.V.
>
>
>
> Here's roughly what she had to say:
>
>
> She knows of approx 20 human subjects tested
> positive for X.M.R.V being treated with
> anti-retrovirals and the results are astonishingly
> positive:
>
>
> 4 Patients, some from bedbound state - Now well
> and considering themselves FULLY recovered!
>
>
> 6 Patients 50% recovered - so far!
>
>
> 6-8 Patients 3-4 good days per week - so far!
>
>
> 2 Patients non-responsive (likely down to
> complications with Lymes)
>
>
>
>
> Dr Mikovits added that those recovering will just
> need extra time on the treatment until fully
> recovered.
>
>
>
> This is good news for all of us and it has left me
> trembling to think that one day, perhaps not in
> distant future, that I might be well again....*
>
>
> Amazing results and great news in my opinion, I
> hope you all agree!
>
>
>
> Jan x
>
>
>
>
>
> N.B. Please note than none of these
> patients are being treated by the WPI.
>
>
~~~~
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maandag 10 januari 2011
a Reminder -Lost Voices....
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From: Gurli Bagnall
A REMINDER
Gurli Bagnall
Some months ago, I was given a precious gift. It
was a copy of:
*Lost Voices: from a hidden illness*
The book is beautifully presented and was collated
and published by Invest in ME.
I was so impressed, I acquired two more copies and
gave one to the local MS Society since they recognize
ME as neurological disease.
I keep the second copy on a table for visitors to look
through and also to lend to those who wish to read
it.
The third, I guard jealousy for this is MY copy.
I raise the issue now because it is clear that even
with the discoveries made during the course of the
last couple of years, we cannot afford to relax.
We still need to remind the public that this is a
serious disease which causes utter devastation in
the lives of its victims and their families.
Copies of this high quality production can still be
obtained from:
Invest in ME in the UK
www.investinme.org
http://bit.ly/gyu3CO (order form)
Telephone: 02380 251719 or 07759 349743
And in Australia from:
the Alison Hunter Memorial Foundation:
www.ahmf.org
http://bit.ly/efddFe (Book Order)
Contact Christine Hunter on:
chunter@ahmf.org
Telephone and fax: +61 2 9958 6285
~~~~
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De Meirleir on Retrovirus
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
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http://bit.ly/gMONLg
Life as we know it
The newest research about living with Chronic
Fatigue Syndrome (CFS)/XMRV/HGRAD/fibromyalgia,
with personal observations (the most pertinent parts
of long articles will be highlighted for the reader)
Sunday, January 9, 2011
De Meirleir on Retrovirus
Retrovirus in European patients: De
Meirleir confirms NIH/FDA & WPI findings
(in FRENCH)
Study results will be shared at the Sept. 7
& 8 international XMRV conference
``````````
Google translation of article below
Discovery: a new virus
could cause chronic fatigue
Magazine - Health Sciences and Tues, August 24,
Researchers at the Vrije Universiteit Brussel (VUB)
and the Belgian company biotech *RED Laboratories*
are able to identify a new retrovirus in patients with
chronic fatigue syndrome, said Tuesday the VUB in a
statement.
These results corroborate a recent American
discovery.
U.S. researchers from the University of Nevada were
discovered in October 2009, the majority of patients
suffering from chronic fatigue syndrome were carriers
of a new retrovirus XMRV.
Before the Belgian study, the U.S. findings had been
confirmed by the Harvard Medical School and the
National Institute of Health (NIH).
Research conducted under the direction of Professor
De Meirleir (VUB) is a novelty because the virus has
been found in sick patients from across Europe.
Moreover, the immunological signature is comparable
to that of a patient with AIDS.
This new discovery will be presented on September 7
and 8 coming at a workshop of the National Institute
of Health in Washington.
``````````
Découverte: un nouveau virus
pourrait causer la fatigue
chronique
Magazine - Sciences et Santé mar 24 aoft
Des chercheurs de la Vrije Universiteit Brussel (VUB)
et de la société belge de biotechnologie "R.E.D.
Laboratories" sont parvenus B identifier un nouveau
rétrovirus chez les patients souffrant du syndrome de
fatigue chronique, a annoncé mardi la VUB dans un
communiqué.
Ces résultats corroborent une découverte américaine
récente.
Des chercheurs américains de l'Université du Nevada
avaient découvert, en octobre 2009, que la majorité
des patients souffrant du syndrome de fatigue
chronique étaient porteurs d'un nouveau rétrovirus
XMRV.
Avant l'étude belge, ces conclusions américaines
avaient déjB été confirmées par la Harvard Medical
School et par l'Institut national de la santé (National
Institute of Health).
La recherche menée sous la direction du professeur
De Meirleir (VUB) constitue une nouveauté car le
virus a été découvert chez des patients malades
issus de toute l'Europe.
Par ailleurs, cette signature immunologique est
comparable B celle d'un patient atteint du sida.
Cette nouvelle découverte sera présentée les 7 et 8
septembre prochains lors d'un workshop de l'Institut
national de la santé B Washington.
Source: http://bit.ly/hlv07t
Posted by CFS Facts
~~~~~~
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zondag 9 januari 2011
XMRV -Host Range and Cellular Tropism

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>>>> 9 January 2011 <<<<
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Host range and cellular tropism of the
human exogenous gammaretrovirus XMRV.
Stieler K, Schulz C, Lavanya M, Aepfelbacher M,
Stocking C, Fischer N.
Institute for Medical Microbiology and Virology,
University Medical Center Eppendorf, Martinistrasse
52, 20246 Hamburg, Germany.
Abstract
Recently, the first human infection with an
exogenous gammaretrovirus (XMRV) was reported.
In its initial description, XMRV was confined to
prostate stromal fibroblasts, although subsequent
reports demonstrated XMRV protein expression in
prostate epithelial cells.
Most recently, XMRV has been detected in blood cells
of patients with chronic fatigue syndrome.
The aim of this study was to elucidate the
transmission routes and tissue tropism of XMRV by
comparing its host range, receptor usage and LTR
functionality with other MLV isolates.
We demonstrate using pseudotype experiments that
XMRV Env mediates efficient infection of cells from
different species.
We show that replication competent XMRV infects
various human cell types, including hematopoietic
cell lines and prostate stromal fibroblasts.
XMRV-LTR activity is significantly higher in the
prostate cancer cell line LNCaP and in prostate
stromal fibroblasts, compared to other cell types
tested and could be one factor contributing to
efficient viral spread in prostate tissue.
Copyright 2009 Elsevier Inc. All rights reserved.
PMID: 20110097 [PubMed - indexed for MEDLINE]
~~~~
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vrijdag 7 januari 2011
Open Letter to Prof Simon Wessely -Without Apology
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>>>> 8 January 2011 <<<<
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Reference:
*Apolgies to Prof. Simon Wessely*
Help ME Circle, 7 January 2011
See Co-Cure: http://bit.ly/hwC4br
Or this blog: http://bit.ly/gz4FIA
~jvr
````
WITHOUT APOLOGY:
OPEN LETTER TO
PROFESSOR SIMON
WESSELY:
Gurli Bagnall
8 January, 2011
There I was, sitting in my motorized wheelchair
trying to control the pain that racks my body and all
but consumes it. To my amazement, I came across
Jan’s apology to you.
While the apology was no doubt triggered by
someone who is *well intentioned*, Jan is an
informed person and I suspect he takes comments
such as those raised – namely that you had once
again, been misjudged and maligned – with a pinch
of salt.
You appear of late, to have taken a back seat –
keeping a low profile and basically, WHEN we hear,
ALL we hear from you are denials and that
disingenuous: “Who? Me?”
In short, the manipulative behaviour with which we
have been “favoured’ for so many years, has come
home to roost. If you have one consistency, it is
your constant inconsistency. When it suits, you say
or do one thing; when it doesn’t suit, you deny
having said or done it.
You know very few of us, but most of us have known
you for years! You have ignored the scientific
findings and were sometimes foolish enough to deny
them outright.
Please do not deny that IN YOUR MIND your
opinions outrank science. Your actions speak for
themselves.
How can anyone believe a word you utter? You rely
entirely upon the equally foolish assumption that we
are all a bunch of idiots. That we can actually read
and operate a computer must have been a terrible
blow to you.
The crucial point for you now, is does anyone really
care any more about whether or not you have been
misjudged and maligned? Having been repeatedly
misjudged and maligned by you, why should they?
At this moment, my dearest wish after more than
two decades of hell, is that you were here beside me
in your own wheelchair; then you could show us
YOUR mettle – for what it is worth.
Would you bear your lot with courage and fortitude
as the rest of us have to do, or would you wail and
howl that you cannot stand the pain; that you do not
have the strength to cut up your own food and when
it is cut up, are you able to chew and swallow it?
Can you manage such things as the transfer from
chair to toilet on your own? Or...oh dear...were you
just a little too slow and now need to expend
strength on changing clothes? And how is the
breathing – a little tight perhaps? And those
arrhythmias...what a bloomin’ nuisance (and worse)
THEY are.
And if on the advice of someone like yourself, you
were incarcerated in a mental institution, I wonder if
anyone would bother to leap into the swimming pool
after throwing you in, to save you from drowning?
But then why should they? Didn’t little Ean Proctor
learn to swim by being thrown in at the deep end.
Yes....well... Hmm... That subject is taboo, isn’t it!
I’m sorry if I appear to be a little personal here, but
isn’t that what this is about? You are very personal
where sufferers are concerned.
And here is a puzzle for you – I’ve never been able to
figure it out. Why is it that my career and earning
capacity, (or anyone else’s, come to that) are of no
importance compared to yours?
According to you, I need to show I am sick so I can
gracefully retire and live a life of leisure on a
sickness benefit! (On a sickness benefit? Are you
joking?) Well, I’ll be darned! Here was I living under
the illusion that appreciation for your services to
things like the insurance industry, the MoD and oh...
You know them better than I do, showed their
appreciation by handing out a pen or two now and
then.
How could I have supposed they actually paid you
for it? Oh by the way, how was your caviar and
champagne last night? My water and boiled egg
were quite nice....thanks for asking.
Seriously, bullies and those who get their own way
through manipulative behaviour, are generally also
cowards.
I wonder how you will regard your brand of humanity
when you are on the receiving end as you are jeered
at? When your treatment package includes being
laughed at and ridiculed?
Having read Jan’s apology, a number of questions
have come to mind that I would like to put to you.
They are as follows:
* When can those who suffered as a result of your
untruths and general influence, expect an apology?
* When can the families of those who took their
own lives because you and your bleating followers
left them no other options, expect an apology?
* When can society expect an apology for false
claims of expertise?
* When can the children who were forcibly removed
from the parental home and protection to be
admitted to a mental ward and literally tortured by
staff due to your direct or indirect influence and/or
instructions, expect an apology?
* As a result, will those children and even adults,
ever be able to trust the medical profession again
throughout the course of their entire lives? When can
they expect an apology for being inflicted with a
lifetime of fear of those they are supposed to trust
with their very lives?
* Your profession in general, is in bad odour. It is
clear that major changes are needed to salvage
whatever credibility is left. You and your kind have
had a large part to play in this – you are the empty
drums that made the most noise. When can your
colleagues expect an apology from you for (a)
making utter fools of them and (b) for making the
lives of those who did their best to work within
ethical parameters, so difficult?
* A wise person once said that when everything
has been taken from you, there is nothing left to
lose. When can the multitudes you have stripped of
everything by your machinations, expect your
apology?
THESE ARE MY PERSONAL THOUGHTS AND
I HAVE NOTHING LEFT TO LOSE. YOU MAY
HAVE GATHERED THAT I FEEL VERY ANGRY
AT THIS TIME.
Gurli Bagnall
New Zealand
~~~~
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XMRV
XMRV+ve Patients & Retroviral Treatment

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Many thanks to Doctor Speedy from
THE NICEGUIDELINES BLOG
at: http://bit.ly/e8fuRn
~jvr
``
http://on.fb.me/igjcnK
XMRV positive patients
respond to retroviral treatment!!
by Jan Maverick
Fryday 7 January 2011
Xinnian a UK sufferer from Foggy Friends
has given permission for me to post the
following:
*....I also spoke to Dr Mikovits for quite some time
this evening regarding M.E patients that are currently
being treated for X.M.R.V.
Here's roughly what she had to say:
She knows of approx 20 human subjects tested
positive for X.M.R.V being treated with
anti-retrovirals and the results are astonishingly
positive:
4 Patients, some from bedbound state - Now well
and considering themselves FULLY recovered!
6 Patients 50% recovered - so far!
6-8 Patients 3-4 good days per week - so far!
2 Patients non-responsive (likely down to
complications with Lymes)
Dr Mikovits added that those recovering will just
need extra time on the treatment until fully
recovered.
This is good news for all of us and it has left me
trembling to think that one day, perhaps not in
distant future, that I might be well again....*
Amazing results and great news in my opinion, I
hope you all agree!
Jan x
N.B. Please note than none of these
patients are being treated by the WPI.
~~~~
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Apologies to Prof. Simon Wessely

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Reference:
*ME/CFS -Familys Nightmarish Experience*
Help ME Circle, 3 January 2011
I posted the horrible story about the young boy Ryan
Baldwin, a severe ME/CFS patient.
*....Although he was declared medically disabled by
the Social Services Administration; the Buncombe
County Department of Social Services took custody
of Ryan, who spent 10 months in three separate
foster placements....*
See:
````````
Writing from memory I added the
following introduction to the article
above:
The story below reminds me of a UK Prof, who
created a terrible climate for ME patients all over
the world. (he also dictates the strategy of the CDC,
with the result (by formulating endless stretching
criteria), that the prevalence figures in the USA are
now the same as with the flawed Oxford standards.
(Because of brainfog the name of this UK Prof has
slipped me at the moment).
What I remember is, that he is a member
of the supervisory board of a company
named PRISMA.
This same company is being paid many millions of
pounds to supply *rehabilitation* programs (such as
CBT and GET) to the NHS for use on *CFS* patients.
He is also an officer of the insurance company
UNUM. Insurance companies save a huge amount
of money in payments if illnesses can be viewed as
mental and not physical.
Anyhow this Prof was involved in a case where a
severely ill, virtually paralysed young boy with
ME/CFS was subjected to horrific psychiatric
*treatment* including throwing him into a
swimming pool:
i.e swim or drown....
He couldn't swim......!
```````````````````
I received the following reply from reader XXXX:
Dear Jan,
I am sure you would want to be accurate otherwise
anyone publishing your posting will also be
publishing misinformation.
Wessely confirmed, earlier this year, that he was
not involved with the Board of PRISMA beyond
around 2001 and that he has not been an "officer
of UNUM".
Here is a copy of his clarification:
http://bit.ly/goQePD
Clarification from Prof Wessely
on interests in PRISMA Health
OK, someone I know asked SW about his
involvement with PRISMA and he responded, asking
that his entire email be posted without edit, if it is
posted. So, here it is:
From: Wessely, Simon
Subject: RE: PRISMA
Date: 25/04/2010 02:26 PM
My interactions with PRISMA already are a
matter of record.
But to answer your questions
*I understand that in 2001 you were still listed
in PRISMA Health literature as a member of the
company's Supervisory Board and that according
to the financial disclosure in a September 2001
paper in the Journal of the American Medical
Association, you served as an advisor for
treatment programs and research opportunities
for PRISMA*
Indeed so.
This is what happened. I had a brief
association with PRISMA when i was
invited to join their supervisory board
specifically because they were interested
in research. This is like being a non
executive director in an English company,
and is not a salaried role. I attended two
board meetings in germany, for which i
received expenses
After a while it became clear that they
were not really interested in research and
we went our separate ways. I can't
remember exactly when i formally resigned,
but it would be when I stopped reporting it
as a possible COI so around 2002 i guess
Since then I have had no contact with
PRISMA at all. In any shape or form. None.
Zero. Indeed, i don't even know if they are
still trading. At no time have I ever been a
share holder in PRISMA, indeed i have
never been a share holder in anything.
I do get a little fed up with this
obsession with me in general, and my links
with PRISMA in particular. The facts are
that my involvement with PRISMA was
brief, did not make me any money, was
declared appropriately at that time, ended
many years ago, and that since then I have
had absolutely no contact with them
whatsoever.
I have made this clear before, but of
course that is rarely gets circulated in
certain circles, so the rumours, innuendos
and slurs continue.
I hope this puts your mind at rest.
Kind regards
Simon Wessely
````````````````
Reader XXXX continued:
and from this post here:
http://bit.ly/ftykeD
Originally Posted by Holmsey
Simon, you made reference in an earlier mail
about others profiting from the XMRV research,
by the supply of testing etc. inferring in the
process that as an NHS employee your
motivations were above suspicion, but obviously,
as this isn't a personal attack, I'd like to here your
comments on this posting:
Wessely is a member of the supervisory board of a
company named PRISMA. This same company is
being paid many millions of pounds to supply
'rehabilitation' programs (such as CBT and GET) to
the NHS for use on 'CFS' patients (Mar 2004,
[Online]). Wessely is also an officer of UNUM (large
insurance company)."
UNUM is a huge disability insurer, and its policies
typically exclude disability coverage for functional
(psychiatric) illness. They have a vested interest in
seeing that CFS/ME stays solely in the realm of
psychiatry, and have bought SW on board as a
gatekeeper for CFS patients. This is conflict of
interest and bias of the highest order, since a finding
of an organic cause of CFS/ME is directly against his
financial interests. Same goes for his relationship to
PRISMA.
Any truth in any of it?
````````
The reply was:
Originally Posted by Holmsey
[Wessely's reply]
Was a non exec of prisma. (Ie unpaid) for
about 18 months cos they said they
wanted to do research. Resigned when it
was clear they weren't going to.
This was god knows when but perhaps 10
years ago. Never ever worked for Unum.
Done one perhaps 2 talks at unum
sponsored meetings. Not about cfs as far
as I recall
````````
So, he has clarified (in November 09 and April 10 this
year) that he was no longer a Board member of
PRISMA beyond around 2001 and that he was not
and is not an "officer" of UNUM.
XXXX
##########
Apolgies to Prof. Simon Wessely
Of course I want to be accurate in *Help ME Circle* -
Although this is not always possible, because in most
cases I'm just the *messenger*.
Because of a severe writing-aphasia (caused by
*ME*), it is a hell of a job for me to write such a
long introduction.
And now I had to immerse frantically in my chaotic
archives......
These are my (absolute correct) findings:
1. Wessley has said he has NOT been
involved with PRISMA for some years
(My PRISMA documents naming him as
a Corporate Officer date from 2001).
2. Although he has definitely spoken at
UNUM-sponsored conferences (and they
were definitely about ME/CFS), SW says he
does NOT act for them.
3. Wessely was NOT directly involved with
throwing Ean Proctor into the swimming
pool (although Wessely DID sign the
letter supporting taking the child into
care).
My well-intentioned apologies to Prof. Simon
Wessely for the flaws in my introduction to an
journal article about one of the victims of the
psychiatric *CFS*-School.
~jan van roijen
~~~~
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donderdag 6 januari 2011
XMRV and Macaque Monkeys

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http://bit.ly/fKUVxf
CFIDS Watch
Thursday, January 6, 2011
Macaque monkeys and XMRV
Possibly the most significant CFS-related research
since the Whittemore-Peterson Institute's XMRV
study was published last year by a group connected
with Emory University, Abbot Labs, and the
Cleveland Clinic.
In this study, rhesus macaque monkeys were
injected with XMRV, and then their blood and organs
were tested to track the progression of the infection.
After a few weeks, XMRV was almost totally gone
from the blood. But the infection had spread to many
of the organs, including the lungs, spleen, liver,
lymphatic system, bronchial passages, gut, and the
sex organs.
When the monkeys were later injected with a bolus
of foreign peptides (which mimics an acute
infection, an immunization, or an acute mold
exposure) there was a huge reactivation of infectious
XMRV.
Stress and certain hormones also appear to be
significant reactivators.
This study is totally consistent with my observations
of the progression of my own illness over the past 16
years.
It also sheds new light on several recent studies
which failed to find XMRV in the blood of patients
with XRMV.
I believe it should provide new impetus and direction
for future XMRV and CFS-related research.
````
* XMRV: Examination of Viral Kinetics, Tissue
Tropism, and Serological Markers of Infection -
The study abstract. [~jvr: see below:
http://bit.ly/eoIxX9]
* XMRV Infection in Primates - Dr. Paul Cheney's
detailed discussion of the study http://bit.ly/f3XhyR
* Monkey Business - Political cartoons commenting
on the study: http://bit.ly/hx1Y9Y
* More Monkeys - More politics: http://bit.ly/i03IaT
###########
http://bit.ly/eoIxX9
17th Conference on Retroviruses
and Oppertunic Infection
Session 41-Oral Abstracts
Virus–Host Interaction: HIV and XMRV
Friday, 9:30 am-12 noon; Room 2011
Paper # 151
XMRV: Examination of Viral Kinetics, Tissue
Tropism, and Serological Markers of Infection
X Qiu1, P Swanson1, K-C Luk1, J Das Gupta2, N
Onlamoon3, R Silverman2, F Villinger3, S Devare1, G
Schochetman1, and John Hackett, Jr*1
1Abbott Diagnostics, Abbott Park, IL, US; 2Cleveland
Clin, OH, US; and 3Yerkes Natl Primate Res Ctr,
Emory Univ, Atlanta, GA, US
Background:
Xenotropic Murine Leukemia Virus-related Retrovirus
(XMRV) is a human retrovirus recently discovered in
familial prostate cancer tissue using DNA array based
Virochip technology.
Understanding viral replication kinetics, tissue
tropism, and the host immune response is
fundamental to establish the etiology of XMRV
infection in human disease.
Development of serologic assays to detect
XMRV-specific antibodies would facilitate
epidemiologic studies.
Methods:
Five rhesus macaques were inoculated intravenously
with XMRV.
Blood was collected throughout the course of
infection, and tissue from multiple organs was
harvested at necropsy.
Two macaques were necropsied at day 6 or 7 and
one at day 144 post infection.
The remaining 2 animals were re-inoculated with
XMRV on day 158 and necropsied on day 291.
XMRV-specific immunoreactivity was monitored by
Western blot using viral lysate.
Recombinant env gp70, p15E and gag p30 were
utilized to develop serologic assays on the
high-throughput automated ARCHITECT instrument
system (Abbott Diagnostics).
Results:
XMRV inoculation resulted in low transient plasma
viremia, although proviral DNA persisted in
circulating peripheral blood mononuclear cells for
several weeks.
Of interest, the earliest leukocyte targets were CD4+
T cells and NK cells followed by CD8+ enriched T and
CD20+ enriched B cells (50% positive); CD14+
monocytes were negative.
Animals sacrificed at the acute stage showed
evidence of viral replication in spleen, lung, lymph
nodes and liver.
In contrast, sacrifice of 2 animals at 19 weeks post
XMRV re-inoculation showed greater dissemination of
XMRV DNA and RNA in various organs including the
GI and urinary tract as well as in vaginal tissue of
the one female.
By Western blot analysis, all 3 chronically infected
macaques developed antibody responses to env and
gag proteins.
The serologic assays demonstrated 100% sensitivity
by detecting all Western blot positive serial bleeds
from the XMRV-infected macaques.
Preliminary results showed evidence of detectable
reactivity to all 3 antigens in a low proportion
(~0.1%) of US blood donors.
Conclusions:
These data suggest that lymphocytes are a primary
target for replication persistence (low grade
replication) of XMRV in the absence of detectable
plasma viremia.
This study identified specific serological markers
useful for detection of antibodies induced by XMRV
infection. The prototype antibody assays will
facilitate large-scale epidemiological studies.
``````
The 17th Conference on Retroviruses
and Oppertunic Infection
Session 41-Oral Abstracts
Virus–Host Interaction: HIV and XMRV
Friday, 9:30 am-12 noon; Room 2011
can be found at: http://bit.ly/ijzyPo
~~~~
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