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

20 jan

XMRV Global Action har lagt ut link til bloggen Lannie in the Lymelight som har skrevet del 2 av denne presentasjonen HER

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

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.

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.

There are further immune cell abnormalities for those with XMRV.

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…

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.

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.

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.

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!!

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.

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.

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 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?

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!


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

18 jan

XMRV Global Action har lagt ut en link til bloggen Lannie in the Lymelight, som har lagt ut denne informasjonen: HER

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.

Les resten av blogginnlegget HER

Retrovirus Reaction: Dr. Judy Mikovits kommer med nyheter om XMRV 17.01.2011.

14 jan

Hentet fra HER

Det er mine uthevelser.


Dr. Judy Mikovits stirs up controversy in neuroimmune disease community.

«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.

Annette Whittemore and Judy Mikovits on contamination and progress at the WPI

23 des

Sam Shad, Nevada Newsmakers

XMRV Global Action’s Transcription of Sam Shad’s interview with Annette Whittemore and Dr Mikovits on Retro-contamination papers:

Klikk her


Det viktigste kommer helt på slutten av intervjuet:


I guess bottom line from this entire discussion today is for people not to panic. Things are still moving forward. Nothing has changed – it’s just that there are simply different opinions.




As one would expect (that there would be different opinions). And this is really a great time of HOPE. Because we’ve also determined in our research this year – and that will be coming out published very soon – we’re understanding WHY the (XMRV) virus hurts the immune system. We’re understanding what’s going wrong to make you sick, and that’s another step to making people well. So it’s a great time of excitement and research around the world. We expect treatments next year (2011).


2011. Can’t wait! 

XMRV Just Mouse DNA Contamination? Not so FAST!

21 des

Hentet fra

On Dec 20, the journal Retrovirology published a suite of 4 articles & a commentary(1) essentially giving the impression that studies reporting evidence of XMRV infection in ME/CFS and prostate cancer patient samples is owing to contamination by mouse DNA or RNA, and suggesting “XMRV might not be a genuine human pathogen.” The articles put some reporters into an ‘XMRV is Dead’ mode.

But not so FAST.

“What these 5 are doing to the patients is a crime against humanity,” fired back the internationally known Belgian clinician/researcher, Dr. Kenny DeMeirleir. Expect much more research to be published in the first half of 2011 that contradicts their inferences, he promised.

And as for the Whittemore Peterson Institute, which directed the first study finding evidence of XMRV infection in ME/CFS patients, «The coauthors stand by the conclusions of Lombardi et al. Nothing that has been published to date refutes our data,» wrote WPI research director Dr. Judy Mikovits in a special statement (see below).

Specifically, “You will not make an immune response to a lab contaminant,” Dr. Mikovits commented to Wall Street Journal reporter Amy Dockser-Marcus (“XMRV: Raising the Issue of Contamination”).



Dec 20, 2010:
The Lombardi et al.(2) and Lo et al. (3) studies were done using four different methods of detection.

They were not simply PCR experiments, as were the studies by McClure et al. and others who have recently reported their difficulties with contamination.

Experienced researchers such as Mikovits, Lombardi, Lo and their collaborators understand the limitations of PCR technology, especially the possibility of sample contamination.

As a result, we and Lo et al. conducted rigorous studies to prevent and rule out any possibility that the results reported were from contamination.

In addition to the use of PCR methodology, the Lombardi team used two other scientific techniques to determine whether, in fact, we had found new retroviruses in human blood samples.

We identified a human antibody response to a gamma retroviral infection and we demonstrated that live gamma retrovirus isolated from human blood could infect human cells in culture.

These scientific findings cannot be explained by contamination with mouse cells, mouse DNA or XMRV-related virus-contaminated human tumor cells.

No mouse cell lines and none of the human cell lines reported today by Hue et al. to contain XMRV were ever cultured in the WPI lab where our PCR experiments were performed.

Humans cannot make antibodies to viruses related to murine leukemia viruses unless they have been exposed to virus proteins.

Therefore, recent publications regarding PCR contamination do not change the conclusions of the Lombardi et al. and Lo et al. studies that concluded that patients with ME/CFS are infected with human gammaretroviruses.

We have never claimed that CFS was caused by XMRV, only that CFS patients possess antibodies to XMRV related proteins and harbor infectious XMRV, which integrates into human chromosomes and thus is a human infection of as yet unknown pathogenic potential

«The coauthors stand by the conclusions of Lombardi et al. Nothing that has been published to date refutes our data.»

Judy A. Mikovits






Forurensede prøver førte til ME-tabbe

21 des

Hentet fra

En ny britisk undersøkelse avviser at kronisk utmattelsessyndrom (ME) skyldes XMRV-viruset.

Amerikanske forskere gikk i fjor ut med det de mente kunne være årsaken til ME, nemlig et retrovirus kalt XMRV. I en studie skrev forskerne at de hadde funnet viruset hos 68 av 101 ME-pasienter, men bare hos 8 av 218 friske kontrollpersoner.

Nå viser det seg at funnet kan skyldes at laboratorieprøvene forskerne brukte var forurenset av muse-DNA.

Fire artikler på konkluderer med at laboratoriefeil førte til feilaktige konklusjoner. Etter å ha lest den amerikanske studien undersøkte engelske forskere blodprøver fra ME-pasienter med en svært sensitiv metode som kalles Polymerase Chain Reaction, som kan oppdage knøttsmå rester av virus-DNA.

– Vi er sikre på at våre resultater viser at det ikke er noen sammenheng mellom XMVR og kronisk utmattelsessyndrom, sa en av de britiske forskerne, professor Myra McClure i en pressemelding. Les mer på

I en kommentar i Aftenposten 25. november skrev divisjonsdirektøren i Helsedirektoratet, Hans Petter Aarseth, følgende:

«Norske myndigheter anerkjenner CFS/ME som en sykdom, og helseforetakene er pålagt å ha et tilbud for diagnostisering og behandling. Men det finnes ikke vitenskapelig dokumenterte årsaksforhold eller behandlingsmetoder.

Vi kan ikke utelukke at XMRV-viruset kan ha en rolle, men pr. dags dato har vi ikke grunnlag for å bruke påvisning av dette viruset som en diagnostisk test (en andel av de friske får også påvist dette viruset).

Forurensede prøver ga falskt ME-håp

21 des

Hentet fra

Kronisk utmattelsessyndrom skyldes ikke XMRV-virus, ifølge britiske forskere.

Siden 2009 har forskerne vært på sporet av en mulig forklaring på utmattelsessyndromet ME – en tilstand som er kjennetegnet av en ekstrem mangel på energi.

Retroviruset XMRV har blitt påvist hos en høy andel av ME-pasientene i to store studier.

Problemet er bare at fem andre studier ikke har klart å påvise en slik sammenheng.

– Falskt positive prøver

Nå kaster en ny britisk studie ny tvil over viruslinken, skriver BBC.

– Vår konklusjon er ganske enkel: XMRV er ikke årsaken til kronisk utmattelsessyndrom, uttaler professor Greg Towers ved University College i London (UCL).

Ifølge den nye studien, skyldes de mange positive XMRV-prøvene rett og slett forurensning av prøvene.

Kan skyldes DNA fra mus

De britiske forskerne har vist at prøver som er forurenset med DNA fra mus lett kan gi positiv XMRV-prøve, fordi musenes arvestoff inneholder et tilsvarende virus.

Forskerne vil ikke avvise at ME kan skyldes et virus, men ser det som usannsynlig at akkurat XMRV-viruset har noe med saken å gjøre.

Studien er publisert i tidsskriftet Retrovirology.

Ikke overrasket

Professor Tim Peto ved University of Oxford kommenterer studien overfor BBC, og sier det har vist seg vanskelig å bekrefte den påståtte viruslinken.

– Det kom som en overraskelse da XMRV først ble knyttet til kronisk utmattelsessyndrom, og det var tvingende nødvendig med flere tester for å se om funnene kunne gjenskapes, sier professor Tim Peto ved University of Oxford.

– Det har blitt gjort flere forsøk som ikke har lykkes i å finne dette retroviruset, og denne studien tyder på at XMRV faktisk egentlig er en forurensning av DNA fra mus, fortsetter han.

Han mener det nå virker svært usannsynlig at XMRV og ME har noen sammenheng.

Avviser at prøvene var forurenset

Whittermore Peterson-instituttet, som står bak den ene av studiene som det blir reist tvil om, avviser at prøvene deres har vært forurenset.

Instituttet skriver i en uttalelse at de har vært spesielt oppmerksom på faren for forurensning av prøvene, og at de derfor har jobbet omhyggelig for å utelukke at dette skulle være tilfellet.

I uttalelsen heter det videre at det ble brukt fire ulike testmetoder i studien fra Whittermore Peterson-instituttet, ikke bare PCR-metoden.

Forfatterne av studien presiserer at de fortsatt står ved konklusjonen.

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