Tag Archives: Judy Mikovits

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!

Reklamer

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 Bohemian.com: 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:

Sam:

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.

Annette:

Absolutely.

Judy:

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).

Sam:

2011. Can’t wait! 

Summary of the Oslo XMRV-seminar, November 28th, 2010.

14 des

Kilde: ESME

Les foredragene til dr. Judy Mikovits og dr. Mette Johnsgaard.

Lecture by Dr. Judy Mikovits, Whittemore Peterson Institute

Dr. Mikovits began by acknowledging several other famous researchers and telling about her collaborations with them, including several researchers at the National Cancer Institute, the Cleveland Clinic, the SAIC and, of course, the Whittemore Peterson Institute.

Dr. Mikovits proceeded by explaining how the novel retrovirus was found in prostate cancer patients in 2006 and 2007, and named XMRV Xenotropic Murine Leukemia virus-Related Virus. She showed how the infectious clone was constructed and sequenced and found to be a novel human gammaretrovirus. Dr. Mikovits then showed how ME/CFS patients have several inflammatory sequelae including antiviral enzyme dysfunction (RNase L), decreased NK cell number and function, increase in activated T cells and increases in inflammatory cytokines/chemokines. She believes that these dysfunctions might be explained by an ongoing retroviral infection and proposed that these patients could be infected with XMRV.

Les resten av foredraget: Klikk her

Lecturer of Dr. Mette Johnsgaard, Lillestrom Helseklinikk, Center for Treatment of Chronic Diseases:

Dr Mette Sophie Johnsgaard opened her speech by introducing Lillestrøm Helseklinikk, Center for Treatment of Chronic Diseases, where she is medical director. They see approximately 600 patients per month, most Norwegian patients, but also some Danish and Swedish patients visit the clinic, and lately patients have been contacting them also from the Continent. Today 3 physicians work at Lillestrøm, mainly with ME/CFS patients.

Dr Johnsgaard showed the audience the impressive list of her support group. Together with the two other physicians at the clinic, she has traveled extensively the last year, visiting several well known ME/CFS experts in order to learn as much as possible on diagnosis and treatment in patients with ME/CFS. This has enabled the doctors to find the best possible treatment plan for every individual patient.

Les resten av foredraget: Klikk her

BREAKING NEWS: Dr. Judy Mikovits foredrag på NJCFSA 17. oktober 2010, XMRV positives notater

18 okt

SKREVET OG PUBLISERT kl. 01.40 I NATT –  av XMRV GLOBAL ACTION

XMRV Glabal Action skrev og publiserte kl. 01.40 i natt notater fra Dr. Judy Mikovits foredrag på NJCFSA 17. oktober 2010.

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For å se originalteksten fra XMRV Global Action sine notater, klikk her

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Hele teksten oversatt til norsk:

Jeg vil starte med å si at jeg hadde ikke sovet nok, og jeg kan ha oppfattet  noen av disse punktene galt. Jeg glemte også å få et konferansehefte med Judy’s lysbilder, så jeg skriver fra minnet. Jeg ble ikke så lenge at jeg fikk med meg Q & A (spørsmål- og svarrunden), så dette er bare notater fra hennes foredrag.

– Judy gjentok at det er ingen bevis på forurensning, og fremhevet at Bill Switzers mtDNA test ble brukt til å utelukke dette som en ekstra sjekk, foruten alle de andre verifikasjonene som ble gjort for Science-paper’et.

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– Bevis for at HMRVs er forbundet med CFS/ME er mye sterkere enn sammenhengen med prostatakreft, fordi de har isolert viruset – noe ingen av prostatakreft-studiene har gjort.

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– En av de negative studiene (Groom et. Al) brukte en metode for å påvise monoklonale antistoffer mot MLV Env proteiner (levert av Chesebro/ Evans). Denne testen gjenkjenner alle PMRVs unntatt XMRV.  Oops.

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– Frank Ruscetti og Rachel Bagni isolerte virus fra Lo/Alter-pasienter (jeg tror det var de som tok en ny blodbrøve – der det var 8 av 9 av de som på nytt ble testet som testet positivt), og det de fant var XMRV.   DETTE ER STORT!!!

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– Over 70 arter av mus ble testet av Coffin, og ingen av dem hadde XMRV. Dette er klart et nytt menneskelig retrovirus.

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– Lo/Alter kjørte WPI UK-prøvene gjennom sine sonder og plukket opp et par flere positive enn det WPI hadde funnet.

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– WPI familie- studiene ble utdypet. Judy viste slektstrær av noen generasjoner. Noen har CFS, noen Fibro, enkelte lymfomer,  ASD,  et hjerteinfarkt (11 år gammel gutt), noen er ikke smittet, noen er smittet men asymptomatiske. Samlet viste det en sterk familiær kobling.

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– De har funnet HMRVs i mennesker så unge som ett år gamle barn, og i så gamle som 88 år gamle eldre.

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– Judy estimerer utbredelsen til at mellom 10-20 millioner amerikanere er smittet. Jeg tror hun sa at dette var basert på data fra Blood Working Group.

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– Viktig å merke seg er den tyske studien som fant XMRV via nasale vattpinner hos immunsupprimerte pasienter. Dette tyder på at smitte gjennom sekret fra luftveiene, er svært sannsynlig. Hun nevnte også blod, urin, og avføring  igjen som sannsynlige smittekilder.

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Jeg må nevne at det var mange av våre mest kjente og kjære til stede, inkludert Hillary Johnson, Annette Whittemore, Marly Silverman, Donnica Moore, og Cairns familien (Peter tok en ny video av Judy utenfor før konferansen startet.)

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Jeg komtil å tenke på et annet punkt. Den siste negative autisme-studien brukte Cooperative Diagnostic sin » drop o’ blod on paper’ «- test.  De har prøvd å få den publisert siden i fjor høst, men først etter at WPI presenterte sin autisme-poster på XMRV-workshop’en fikk de endelig publisert denne ‘crap’-studien. Hennes ord, ikke mine.