~~~~~~~~~~~~~~~~~~~~~
Send an Email for free membership
~:~:~:~:~:~:~:~:~:~:~:~:~:~
>>>>> Help ME Circle <<<<
>>>> 18 January 2011 <<<<
Editorship : j.van.roijen@chello.nl
~:~:~:~:~:~:~:~:~:~:~:~:~:~
http://bit.ly/g6tqzB
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
~~~~
Geen opmerkingen:
Een reactie posten