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01/21/2010 02:56 PM

1-22, 2 pm PST, Mikovits XMRV Presentation Online

Bettyg
 
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Join the Mikovits XMRV Presentation Online at 2 pm Pacific, Jan 22

LOOKS LIKE A MUST TO LISTEN TO TOMORROW OR LATER !!

Check out the link at www.prohealth.com/xmrv

ProHealth and the HHV-6 Foundation are honored to be hosting this globally webcasted presentation & Q&A session by XMRV researcher Judy Mikovits, PhD.

This Santa Barbara-based event will be Dr. Mikovits' first presentation to patients since publication of the groundbreaking XMRV paper in October 2009.

She will take questions from the audience, and has made a special effort to address many that patients and researchers from all over the world have submitted in advance[/u].

Annette Whittemore, Founder and President of the Whittemore-Peterson Institute, will kick off the event.

TIME:

2 to 4 pm Pacific Time, Friday Jan 22

For the time of the event where you live, check the World Clock Time Converter -

www.timeanddate.com/worldclock/converter.html - and convert from U.S.A. California to your time zone.

TO JOIN THE EVENT AS IT IS STREAMED ONLINE

A link to the Mikovits Presentation Page is featured on www.ProHealth.com. You can go there now to check whether you have the latest version of Flash Player, download it free if you don't - and take a virtual seat Friday when the event begins!

[u]A VIDEO RECORD OF THE EVENT WILL BE POSTED LATER ON PROHEALTH.COM

* * * *

We hope that you will be able to participate tomorrow in this historic event with Dr. Mikovits and WPI Founder Annette Whittemore, and look forward to joining you there.

Sincerely,

HHV6 Foundation (http://www.hhv-6foundation.org)

ProHealth, Inc. (http://www.prohealth.com)

Reply

01/22/2010 12:01 AM
Bettyg
 
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up; this will be LIVE TODAY AT 2 PM PST to learn more about HHV-6 and the NEWEST discovery! Smile

01/23/2010 12:49 AM
Bettyg
 
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did anyone watch this? i heard elsewhere it went down so ALL was not heard but will be available next wk. on prohealth board. thx Smile

01/23/2010 03:29 PM
Bettyg
 
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from my friend, bugg, who listened to this ....

Hey Guys-

I hope many of you were able to watch the presentation on the web on ProHealth given by Dr. Judy Mikovits regarding the XMRV retrovirus and it's role in CFS and (lyme).

(Thanks to the lymeposters on Lymenet who told us about this presentation!!!!)

The presentation was extremely informative and fascinating.

Unfortunately, part of the live video feed was interrupted. So I only saw the beginning and the end (question and answer session).

For those wanting to see the entire presentation, it will be available in-full, on-line next week at ProHealth...I encourage you to watch it.

Anyway, now to what may interest the "chronic lyme-post-lyme" patients (whatever label you prefer)

Dr. Mikovits says they are actually looking and currently studying a "chronic lyme cohort group".

This is a group of patients who have treated for some time with antibiotics but are still ill.

It is her theory that a subset of lyme patients WHO DO NOT RECOVER WITH REPEATED ANTIBIOTIC TREATMENT may be infected with the retrovirus, XMRV.

She theorizes that the immune system in these patients has neuro-immune dysfunction. These patients cannot get well because their immune systems are dysfunctional due to the added burden of XMRV.

It is her theory that treating some of these chronic lyme patients with an anti-retroviral may help them finally beat the lyme and recover their lives.

She said retroviruses don't infect people differently. However, some people's immune systems can control the retrovirus and keep it down whereas others cannot.

There may be additional environmental factors, other viruses, genetics that come into play....

They are currently studying the "inflammatory markers" as well the cytokines anc chemokines and how they cluster in infected persons but the data has not yet been analyzed.

Apparently the results can fluctuate based on when the test is taken and the activity of the white blood cells at the time the test is drawn.

The key in the treatment of the retrovirus is to cut down on the transcription (replication) of the retrovirus (when the virus replicates, it rewrites the DNA). Reverse transcriptatse is ONLY found in retroviruses.

A retrovius IS NOT UBIQUITOUS like EBV, for ex., where 90% of the population carries EBV.

She said they think some event, trigger, stress, illness, lyme; whatever impacts the person who has XMRV and the immune system just can't handle it.

This is why people with CFS or lyme may remain sick for years and years.

She said there is an atypical form of MS, which is non-demyelating, where they are finding entire families with neuro-immmune disease. She said they are finding XMRV in many of these family members.

If you have taken the XMRV test and tested NEGATIVE through PCR, you MAY NOT BE NEGATIVE.

The best testing is the VIPDX test. For answers about questions regarding XMRV and testing, go to:

http://www.wpinstitute.org/news/news_current.html

Some of the audience members asked about things that could be taken right now by CFS patients until they have the anti-retrovirus.

Dr. Mikovits said to be very careful with supplements as they aren't regulated by the FDA and may contain things that could hurt you.

She said she would look to things like [b]non-steroidal anti-inflammatories, things that help regulate normal cortisol levels, NAcetylcysteine and glutathione which help with oxidative stress.

(She also mentioned that progesterone could upregulate the virus)....[/b]

Anyway, if anyone else has comments to add or has spoken with the Whitemore Peterson Institute regarding lyme and XMRV, I would love it if you would contribute to this thread...

Hope this helps... Bugg

more comments in this thread; so read it for others who listened to this. Smile

http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/90342


02/20/2010 10:45 AM
Bettyg
 
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Another XMRV Q&A TODAY, 2-20-10, with Dr. Cheney and Judy Mikovits

emla999/Lyme

LymeNet Contributor

Member # 12606

posted 02-19-2010 05:51 PM

For those of you that are interested in XMRV. There will be another XMRV Q&A February 20th with Dr. Paul Cheney and Judy Mikovits.

http://www.cheneyresearch.com/live? utm_source=Cheney+Research&utm_campaign=dd3ed840cb- web_broadcast_xmrv_qa_cr&utm_medium=email

"Free Live Web Broadcast:

XMRV and CFS Q&A Session with , via speaker phone, will be holding a live web broadcast to answer your questions on XMRV and CFS. This broadcast is open to anyone.

CheneyResearch.com Subscribers and Cheney Clinic Patients may submit questions for this live broadcast."

Posts: 751 | From U.S.A | Registered: Jul 2007

***********

YOU'LL HAVE TO CHECK WHAT TIME THIS OCCURS TODAY!

betty Smile


02/20/2010 09:56 PM
Bettyg
 
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Mikovits/Cheney XMRV Q&A summary

emla999/Lyme

LymeNet Contributor

Member # 12606

posted 02-20-2010 05:36 PM

------------------------------------------------------------ --------------------

A summary of the Mikovits/Cheney XMRV and CFS Q&A session can be read by clicking on the link down bellow.

http://health.groups.yahoo.com/group/infection-cortisol/ message/1320

You can also listen to an audio replay of that presentation here: http://www.divshare.com/download/10538222-efe

A few highlights:

Peptide T may be a useful treatment for XMRV

PCR testing for XMRV is INEFFECTIVE.

XMRV can cause other viruses such as EBV,CMV,HHV-6 to reactivate.

Cortisol feeds the virus.

Posts: 759 | From U.S.A | Registered: Jul 2007

emla999/Lyme

LymeNet Contributor

Member # 12606

posted 02-20-2010 07:41 PM

------------------------------------------------------------ --------------------

From the CFS forum.

http://forums.aboutmecfs.org/showthread.php?2975-Free- Mikovits-web-talk-from-Cheney-Clinic-Wednesday-Feb-10th!-1- 00-EST/page19

Message #186

Paula Carnes Notes on the talk

Paula Carnes just sent me her notes:

This is my quick summary of the interview today between Cheney and Mikovits. Please feel free to add to or correct any errors.

Treatment idea for XMRV

Peptide T may be a useful treatment for XMRV. It interacts with the monocyte in retroviral diseases.

http://en.wikipedia.org/wiki/Peptide_T

What about UK and German negative results and VIP negatives?

There is very low level of XMRV in blood. Researchers must use all techniques. PCR is ineffective. Culture also if low level in blood. We don't know where the reservoir of the virus is.

Gow et al in the UK found XMRV at 4,6 in healthy population yet found none in cfs patients. Mikovits said they used a different reagent and did not ask WPI what reagent to use.

What to do if you tested negative at VIP or want to be tested?

Go to the WPI website and sign up to be in their study. They are notifying all who have signed up about upcoming studies. They hope to have all of these patients notified in the next week.

Does XMRV enter the brain, and what specific area?

It probably enters microglia cells which take it to the brain. It certainly could affect the autonomic nervous system. We do not know what particular area of the brain is affected.

How is XMRV transmitted?

Certainly use HIV universal precautions - sexual protection, never share razors or toothbrushes. Perhaps be careful about sharing glasses, exchange of saliva. We don't know.

Many cfs patients have elevated RNaseL. Would this suggest XMRV?

Yes, elevated RNaseL is a sign of an active viral infection.

NK cell function would be elevated and/or defective. NK cells clear viruses and tumor cells.

CD4 to CD8 ratio is abnormal?

Mikovits said, "We are not seeing this."

Would there be activation of herpes viruses - EBV, CMV, HHV6?

Yes, because XMRV and HIV cause immune deficiency. WE WOULD ALSO SEE THIS EFFECT IN CHRONIC LYME CASES.

Would XMRV cause neurological problems - disturbance of the vestibular system?

Yes, there would be myopathy, can't walk. This would be coming from the neurotoxicity of the XMRV infection. (I am not sure I got all of this)

Immune system changes would involved elevated cytokines and TGF beta.

Were the CFS outbreak clusters driven by a retrovirus?

We certainly think so and are investigating this.

Cheney discussed briefly the expectation of recovery saying that age was the key factor. People over 40 were least likely to recover and if the patient had been sick for longer than 5 years.

Severity of the illness was not an issue. You could be very sick and still recover. Degree of stress makes it much worse because of the cortisol response. Mikovits concurred on this. Cortisol feeds the virus.

[Not sure that is the way she put it, but you get the point.]

A male patient, mono like onset at age 25, years later developed testicular cancer and a heart rhythm disturbance. Could these all be related to XMRV.?

Yes.

Cheney mentioned last that heart symptoms are from right ventricular strain and diastolic dysfunction found in 97% of cfs cases. You know you have this when you cannot mall shop and heat and standing cause energy problems.

[I would describe that as feeling like you are about to pass out on the ground.] This is coming from energy problems at a cellular level.

Again, Mikovits suggested that XMRV could cause this.

--------------------------------------------------

Posts: 759 | From U.S.A | Registered: Jul 2007

http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/91358

Post edited by: Bettyg, at: 02/20/2010 09:57 PM


02/06/2011 03:13 PM
Bettyg
 
Posts: 32210
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Jan. 17, 2011 presentations!! Great info on XMRV

Blog: Lannie in the Lymelight

PART 1:

1/17/11 XMRV presentation by Dr. Judy Mikovits and Annette Whittemore

http://lannieinthelymelight.blogspot.com/2011/01/part-1- 11711-xmrv-presentation-by-dr.html

betty note: SEE THE SITE ABOVE FOR ALL LEGIBLE GRAPHICS SHOWN!

(Note edits made in CAPS on 1/20/11 based on feedback received; also video will be available soon on http://www.gordonmedical.com/)

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 head count, 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.

graphic

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.

graphic

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.

graphic

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 REPEATEDLY (updated 1/20/11), "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.

graphic

(UPDATED 1/20/11)

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.

graphic

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.

graphic

The WPI followed suit in their own exercise, performing a family study with multiple Neuroimmune Diseases.

graphic

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.

For Part 2 CLICK HERE

**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!

21+ comments there at site you can read when you look at the graphics Smile

**********************************

POST: Part 2

Blog: Lannie in the Lymelight

PART 2: 1/17/11 XMRV presentation by Dr. Judy Mikovits and Annette Whittemore

http://lannieinthelymelight.blogspot.com/2011/01/part-2- 11711-xmrv-presentation-by-dr.html

Wednesday, January 19, 2011PART 2: 1/17/11 XMRV presentation by Dr. Judy Mikovits and Annette Whittemore

For Part 1 CLICK HERE

(Note edits made in CAPS on 1/20/11 based on feedback received; also video will be available soon on http://www.gordonmedical.com/)

And now back to the story of XMRV. What do we know about XMRV?

graphic

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.

graphic

I'm afraid I can't remember what ATL stands for, but basically it's representing a category

(ONE REPORTED BACK THINKING IT IS HTLV, ANOTHER HAS SAID ADULT T CELL LEUKEMIA/LYMPHOMA - THIS IS NOT CONFIRMED, PLEASE WAIT FOR VIDEO - 1/20/11) 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 NON-T cell white blood cells(updated 1/20/11).

graphic

There are further immune cell abnormalities for those with XMRV.

graphic

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

important graphic!

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.

graphic

The top half shows the original process performed for the Science, 2009 published research.

Mikovits spoke of step 1 was PRC(updated 1/20/11).

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.

graphic

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.

graphic

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!!

graphics

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.

graphic

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.

graphic

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.

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 AND B12 (updated 1/20/11), and specifically mentioned supplements called Deplin and Cerefolin NAC.

THIS OF COURSE SHOULD BE DISCUSSED WITH A MEDICAL PROFESSIONAL BEFORE TAKING.

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?

graphic

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!

28 comments on this one can be read at site when you look at all the graphics! betty

[/size]

if you read lannie's detailed posts & saw photos she took on her camera, PLEASE SEND HER AN EMAIL TO THANK HER FOR ALL SHE DID FOR ALL OF US NOT THERE!

i've been so impressed reading and breaking up her super long paragraphs so i could comprehend it.

bettyg, leader Smile

Post edited by: Bettyg, at: 02/10/2011 01:01 AM

Post edited by: Bettyg, at: 06/23/2012 09:00 AM


02/10/2011 01:03 AM
Bettyg
 
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walktheline and others,

i've now copied/pasted/broke up lannie's lengthy paragraphs into short comprehendable ones for us all; really interesting things here.

you'll have to go to the site to READ ALL COMMMENTS ON HER NOTES/CONFERENCE & TO SEE THE 50-75 PHOTO SLIDES SHE TOOK.

betty


02/08/2012 03:39 AM
Bettyg
 
Posts: 32210
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Fallout From Fatigue Syndrome Retraction Is Wide

David Calvert/AP Images, via Associated Press

DASHED HOPES Before a legal showdown, a finding from Dr. Judy Mikovits at the Whittemore Peterson Institute for Neuro-Immune Disease in Reno, Nev., gave hope to desperate patients. Above, a culture in her lab there.

By DAVID TULLER

Published: February 6, 2012

When scientists reported in 2009 that a little-known mouse retrovirus was present in a large number of people with chronic fatigue syndrome, suggesting a possible cause of the condition, the news made international headlines.

For patients desperate for answers, many of them severely disabled for years, the finding from an obscure research center, the Whittemore Peterson Institute for Neuro-Immune Disease in Reno, Nev., seemed a godsend.

Podcast: Science Times

Enlarge This Image

David Calvert/Associated Press

Dr. Judy A. Mikovits outside the Whittemore Peterson Institute for Neuro-Immune Disease last year in Reno, Nev.

“I remember reading it and going, ‘Bingo, this is it!' ” said Heidi Bauer, 42, a mother of triplets in Huntington, Md., who has had chronic fatigue syndrome since her 20s. “I thought it was going to mean treatment, that I was going to be able to play with my kids and be the kind of mom I wanted to be.”

Patients showered praise on the lead researcher, Dr. Judy Mikovits, a former scientist at the National Cancer Institute.

They sent donations large and small to the institute, founded by Harvey and Annette Whittemore, a wealthy and politically well-connected Nevada couple seeking to help their daughter, who had the illness.

In hopes of treating their condition, some patients even began taking antiretroviral drugs used to treat H.I.V., a retrovirus related to the murine leukemia viruses suddenly suspected of involvement in chronic fatigue syndrome.

More recently, however, the hopes of these patients have suffered an extraordinary battering.

In a scientific reversal as dramatic and strange as any in recent memory, the finding has been officially discredited; a string of subsequent studies failed to confirm it, and most scientists have attributed the initial results to laboratory contamination.

In late December, the original paper, published in the journal Science, and one other study that appeared to support it were retracted within days of each other.

As the published evidence for the hypothesis fell apart, a legal melodrama erupted, dismaying and demoralizing patients and many members of the scientific community.

Dr. Mikovits was even briefly jailed in California on charges of theft made by the institute.

“I'm stunned that it's come to this point,” said Fred Friedberg, a professor at Stony Brook University Medical Center and president of the International Association for C.F.S./M.E., a scientific organization.

“This is a really sad unraveling of something that was perhaps going to generate a whole new direction in this illness.”

Despite the controversy, Dr. Mikovits is now supervising some lab work as part of a large government-sponsored study being spearheaded by Dr. Ian Lipkin, a leading Columbia University [b]virologist.

The study was established before the two retractions to examine the possible link between chronic fatigue syndrome and mouse retroviruses.

Dr. Mikovits still hopes to replicate her original results, and many patients continue to believe fervently in her hypothesis; study results are expected early this year. [/b]

She did not respond to requests for comment.

An estimated one million people in the United States suffer from chronic fatigue syndrome, which is characterized by profound exhaustion, a prolonged loss of energy following minimal exertion, swollen lymph nodes, sore throat, cognitive dysfunction and other symptoms.

Experts now generally believe that one or more infectious agents, or perhaps exposure to toxins, set off a persistent, hyperactive immune response — the likely cause of many of the symptoms.

Although the Centers for Disease Control and Prevention first investigated the illness in the mid-1980s, the agency has not been able to find a cause, identify any biomarkers or diagnostic tests, or develop effective treatments.

Patients have long accused the mainstream medical and scientific community of neglect and abandonment. Many say that the C.D.C. has largely treated their disease as a psychological or stress-related condition.

A 2010 paper from the agency, for example, galled patients with the conclusion that they suffer disproportionately from “paranoid, schizoid, avoidant, obsessive-compulsive and depressive personality disorders.”

Dr. Mikovits's research, done with collaborators from such prestigious organizations as the National Cancer Institute and the Cleveland Clinic, seemed to vindicate the concerns of many with the condition.

The scientists said they had found that 67 percent of patients sampled were infected with a mouse virus called XMRV, compared with 4 percent of the controls.

“If for years you've been told that your illness is all in your head and then you're being told, ‘Look, we found something concrete and very substantial,' then of course there will be rallying behind that,” said Rivka Solomon, 49, a Massachusetts playwright who has been largely homebound with the syndrome for more than 20 years.

The publication of Dr. Mikovits's work brought immediate attention, much of it unflattering.

Other scientists soon published studies challenging the findings, and Science issued first a statement of concern and then a partial retraction of the original study.

Even as her work was publicly debated, the blunt and feisty Dr. Mikovits raised eyebrows among other scientists for stating at conferences that murine leukemia viruses could be related to autism.

Perhaps more disconcerting, a commercial lab associated with the Whittemore Peterson Institute began marketing screening tests for XMRV, the hypothesized cause of chronic fatigue syndrome, costing hundreds of dollars.

The business enraged many patients once they realized the results might be meaningless.

Next Page » page 2

A version of this article appeared in print on February 7, 2012, on page D5 of the New York edition with the headline: Fallout From Fatigue

Syndrome Retraction Is Wide.

Published: February 6, 2012

Amid mounting concerns, Dr. Mikovits left her position as research director at the institute in a dispute over management practices and control over research materials.

The institute sued her, accusing her of stealing notebooks and other proprietary items.

Dr. Mikovits was arrested in Southern California, where she lives, and jailed for several days, charged with being a fugitive from justice.

After her split with the institute, Dr. Mikovits denied having the missing laboratory materials.

But a lab employee, Max Pfost, said in an affidavit that he took items at her request, stashing notebooks in his mother's garage in Sparks, Nev., before turning them over to Dr. Mikovits.

At one point, “Mikovits informed me that she was hiding out on a boat to avoid being served with papers from W.P.I.,” Mr. Pfost said in the affidavit. Some lab items have since been returned.

In December, a judge ruled against her in the civil case.

The criminal case is pending; another hearing in the civil case is in late February.

But in late January, the Whittemores were themselves accused of embezzling millions of dollars in a lawsuit filed by partners in Mr. Whittemore's real estate business.

The Whittemores, who have countersued, maintain their innocence of the embezzling charges, and Annette Whittemore stated in an e-mail that institute research continues.

The events of the past couple of years, though disheartening to chronic fatigue syndrome patients, may have a silver lining:

Research into the disease, much of it privately financed, is ratcheting up.

A new research and treatment center has been created at Mount Sinai Hospital in New York.

The Hutchins Family Foundation is investing $10 million in the Chronic Fatigue Initiative, an effort to find causes and treatments that has recruited top researchers from Columbia, Harvard, Duke and other institutions.

“The disease had languished in the background at N.I.H. and C.D.C., and other scientists had not been paying much attention to it,” said John Coffin, a professor of molecular biology at Tufts University. “This has brought it back into attention.”

Dr. Coffin, who at first supported the mouse retrovirus theory but later disputed it, noted that the illness “does seem to have characteristics that would suggest infectious origins” and that other retroviruses could be involved.

Despite the personal and professional setbacks for Dr. Mikovits, many patients, like Ms. Solomon, continue to believe that a retrovirus is causing their illness.

But even if the retroviral research does not pan out, her work, and the publicity it has brought to our illness, has forever changed the landscape,” said Ms. Solomon.

A version of this article appeared in print on February 7, 2012, on page D5 of the New York edition with the headline: Fallout From Fatigue Syndrome Retraction Is Wide.

http://www.nytimes.com/2012/02/07/health/fallout-from- fatigue-syndrome-retraction-is-far-and-wide.html? pagewanted=2&_r=1

© 2012 The New York Times Company

Post edited by: Bettyg, at: 02/08/2012 03:42 AM

Post edited by: Bettyg, at: 02/08/2012 03:58 AM

Post edited by: Bettyg, at: 02/08/2012 04:08 AM


06/23/2012 09:03 AM
Bettyg
 
Posts: 32210
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Charges Against Chronic Fatigue Researcher Dropped

By Cole Petrochko, Associate Staff Writer, MedPage Today

Published: June 14, 2012

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Criminal charges filed against the lead researcher of now-retracted studies linking a mouse virus to chronic fatigue syndrome have been dropped.

The charges against Judy Mikovits, PhD, involved lab notebooks and a computer she is alleged to have taken from her former employer, Whittemore Peterson Institute in Reno, Nev. The institute and director Annette Whittemore also filed a civil suit against Mikovits.

An assistant district attorney for Washoe County, Nev., told Science magazine that the charges were dropped on Monday because of "witness issues" with the case and complications surrounding institute co-founder Harvey Whittemore's alleged illegal campaign donations.

The charges were dropped "without prejudice" -- meaning the charges can be revisited at a later date -- and the civil case against Mikovits remains.

Mikovits was jailed briefly after turning herself in last year but was freed on her own recognizance.

Troubles related to Mikovits' research began in 2009, when her team published a study in the journal Science that claimed a mouse virus known as XMRV was a cause of chronic fatigue syndrome.

Most researchers were unable to replicate her results, which caused many to believe the findings were due to laboratory contamination, including one study that suggested the virus was not seen in the wild but carried on in lab results through genetic recombination in cell lines.

Mikovits was fired from the institute in late September 2011 after a paper she co-authored cast further doubt on the XMRV-chronic fatigue syndrome link.

Director Whittemore alleged Mikovits' termination was due to insubordination, and the allegation was corroborated in letters exchanged between the two over Mikovits' refusal to share a cell line with Vincent Lombardi, PhD, a former collaborator on the original 2009 research.

The original study as well as a second one -- the only other study to corroborate Mikovits' findings -- were both retracted due to a lack of confidence in the studies' validity, according to statements in Science and the Proceedings of the National Academy of Sciences published in December 2011.

Cole Petrochko

Associate Staff Writer

Cole Petrochko started his journalism career at MedPage Today in 2009, after graduating from New York University with B.A.s in Journalism and Psychology.

When not writing for MedPage Today, he blogs about nerd culture, designs websites, and buys and sells collectible card game cards. He is based out of MedPage Today's Little Falls, N.J. Headquarters.

http://www.medpagetoday.com/PublicHealthPolicy/Ethics/33282? utm_content=&utm_medium=email&utm_campaign=DailyHeadlines& utm_source=

© 2012 Everyday Health, Inc. All rights reserved

Post edited by: Bettyg, at: 06/23/2012 09:08 AM

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