XMRV presentation -Dr. Mikovits & Annette Whittemore

[Guest guest]

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 , CA.

Presenters were Dr. Judy Mikovits, Director of

Research, Whittemore Institute and

Annette Whittemore, President and Founder,

Whittemore 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 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 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 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.

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PART 2: Biomarkers specific to XMRV, Treatment

discussion, and The Future of XMRV