Dr. Michael Snyderman, XMRV Positive and on Anti-retrovirals for Chronic Fatigue Syndrome

Graph showing the sharp decline in white blood cell count for Dr. Snyderman after taking Anti-retrovirals (AZT) and then later Tenofovir. Graph courtesy: Dr. Snyderman

Dr. Michael C. Snyderman is taking anti-retrovirals for a very simple reason – they work for him.  His elevation of cytokines and chemokines, which are considered by some Chronic Fatigue Syndrome (CFS) experts as classic for subgroups of CFS patients, improved as did his symptoms of CFS and leukemia. Yes, Dr. Snyderman is taking Anti-retrovirals (drugs commonly used to treat HIV/AIDS) to treat Chronic Fatigue Syndrome (read earlier post on use of such drugs for CFS)

A Hematologist-Oncologist and assistant professor of Medicine, Dr. Snyderman believes that where there is smoke there is fire.  “There is no plausible explanation for my results other than that treatment of a retrovirus improved my leukemia and my CFS. There is nothing about my clinical picture to say this is an unusual phenomenon.”

Dr. Snyderman’s blood was originally tested for XMRV by Dr. Judy Mikovits, formerly with the Whittemore Peterson Institute for Neuro-Immune Disease (and the researcher at the center of the XMRV-CFS controversy) and came back positive. His blood is now being reanalyzed at laboratories that can do deep sequencing and integration studies.  Dr. Snyderman says, “Preliminary data is in favor of my having a unique virus, not classical XMRV.”

Another study in the field is pending and is expected to be published soon.

Dr. Snyderman said he had struggled with fatigue for years, but had never characterized it more specifically.  Then in 2007 he was diagnosed with chronic lymphocytic leukemia (CLL) although he says in retrospect the process had been there for a year.

It wasn’t until 2009 when he read about the possible association of a murine related retrovirus in CFS patients that things began to click.

He realized that he met the Canadian Consensus criteria, the same criteria used by Lombardi et al in addition to the 1994 Fukuda definition, to define the cohort of CFS patients they tested.

However the connection that stood out for him was the murine viral connection.  Dr. Snyderman had initially wondered if his exposures had led to a DNA virus infection.  When he reviewed the literature for a connection between DNA viruses with CLL and cancer in general, he ran into a problem that also plagues the CFS literature – the literature was highly conflicted.

However, he also unearthed what were for him tantalizing leads – studies from the 1970s from three separate and well regarded labs (Sol Spiegelman’s lab at Columbia University; Robert Gallo’s NIH lab and another at UC San Diego) linking MuLVs to cancer.  The researchers in the studies found MuLVs (which they compared to the Rauscher murine leukemia virus).

The route since then has had ups and downs, but Dr. Snyderman remains focused.  He said that by May of 2010 his leukemia cells were increasing at a rate that prognosticated a survival of only 36-months and pain and fatigue were taking a toll. Treatment of CLL is both toxic and expensive, but has never been proven to prolong survival according to Dr. Snyderman.

“As a Hematologist-Oncologist I felt that I was qualified to decide my treatment,” he said. Paying for the drugs out from his private funds, Dr. Snyderman began using anti-retroviral drugs and responded for nearly 10-months. He said he then relapsed, added another drug, tenofir to which he is once again responding. See the sharp decrease in the Absolute Lymphoyte (white blood cell) count after taking AZT and then Tenofovir (both anti-retrovirals) in the figure above (top right corner)

Dr. Snyderman presented his data at the original XMRV workshop and also at a peer reviewed conference at MD Anderson Cancer Hospital.  “A leading figure in CLL research, Dr. Kanti Rai, thought my data presentation was valuable and we were going to collaborate with his research laboratory,” said Dr. Snyderman.

My position is that further scientifically designed study of other patients with CFS and cancer is indicated,” said Dr. Snyderman who hopes to have his results published.  “My results are a starting point.”

From the entire team at TrialX/CureTalk, we would like to thank Dr. Snyderman for taking the time to talk about his experience and to share his personal health data. We salute such heroes who are helping push the boundaries of medical knowledge.

*A Swedish study was published October 13 which did not find either XMRV or HGRV in patients with myalgic encephalomyelitis.

The authors of the study, “Murine Gammaretrovirus Group G3 was not found in Swedish patients with Myalgic Encephaloymyelitis/Chronic Fatigue Syndrome and Fibromyalgia” concluded, “We controlled for presence and amplifiability of nucleic acid and for mouse DNA contamination. To score as positive, a sample had to react with several of the XMRV/HMRV PCRs. None of the samples gave PCR reactions which fulfilled the positivity criteria….XMRV/HMRV like proviruses occur in the third murine gammaretrovirus group, characterized here. PCRs developed by us, and others, approximately cover this group, except for the INT RTQPCR, which is rather strictly XMRV specific. Using such PCRs, XMRV/HMRV could not be detected in PBMC and plasma samples from Swedish patients suffering from ME/CFS/FM, and in sera from Swedish blood donors.”

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7 thoughts on “Dr. Michael Snyderman, XMRV Positive and on Anti-retrovirals for Chronic Fatigue Syndrome

  1. Ms. Bensen,

    I am very impressed with your journalism in this and your earlier pieces on ME (“CFS”). You actually investigate rather than repeating press releases! We need more journalists like you! Pls feel free to contact me if you wish to discuss the manufactured ‘controversies’ of ME. Good luck!

  2. Thanks for a very informative article, Kate. Dr. Snyderman is highly methodical and presents a very good case.

    I wonder if anyone can go and get their blood deep-sequenced. It sounds appealing to me. I presume his “unique virus” is still a murine related retrovirus.

    Thanks again

  3. Dr Snyderman wasn’t DIAGNOSED with xmrv. Dr Mikovits is not a clinician and doesn’t diagnose. Either his blood was tested at WPI or at VIPdx and found positive for what was then thought to be xmrv, which has since been shown to be the wrong name. Ongoing research has shown “cfs” patients have several variaties of a retrovirus in the MLV (Murine Leukemia Virus) family.

    Otherwise, thank you for an overall accurate report on this very interesting find by and for Dr. Snyderman. As usual, when a “cfs” patient gets one of the many rare cancers common to “cfs” patients, the focus then turns to the cancer and the “cfs” is once again ignored.

    Here’s wishing Dr Snyderman and Dr MIkovits very healthy futures, in life and in research.

  4. The actual evidence for MuLVs in any disease is scant. As for HGRVs if the soon to be published study is about them then the science will be reported.

    To do so at this point is jumping the gun.

  5. Fascinating article. Thank you for the graph.

    It seems that CDC has a specific pattern in it’s approach to anything that correlates with a subset of CFS patients – they ask one question, “Does it CAUSE the condition?” and find a way to answer “no.”. Then any other research is deemed officially irrelevant.

    I have seen this happen with my own immune biomarkers (natural killer cell function virtually nil, presence of defective 37kDa Rnase-L, and abnormal cytokine pattern) and viruses (active for HHV-6 Variant A, HHV-7, cytomegalovirus, and Coxsackie B; recurring EBV; HHV-6 and CMV are in my spinal fluid). Now, you would think that my host of abnormal neurological symptoms would be related to that highly unusual pattern, but CDC says no. They don’t even acknowledge my abnormal SPECT scans or VO2 MAX tests (except t say that testing for any of this is inappropriate for women’s with a CFS diagnosis, which is a gift to the insurance companies.)

    So I was not surprised at the speed with which any research on XMRV and CFS had to disappear. We could call it the CDC’s own Mary Rules – if Mary has it, we deny it. And I am so sorry to have to report that Mary was in that “Science” study and was positive by serum and antibody for … XMRV. Oops. My bad.

    Personally, I think the human gamma retroviruses are going to turn out to be co-factors. As someone who worked with multivariate regressions in my professional life BC (Before CFIDS), I keep wondering when someone will design one for CFS or the more specific disease M.E. (I also fit the definitions for that).

    But my suggestion for Dr. Snyderman would be this: get in touch with the HHV-6 Foundation (www.hhv-6foundation.org) and get tested for active infections of beta herpesviruses. There is a lot of research on this. Also, many of us are infected with Coxsackie B, of the polio family of viruses (enteroviruses), for which there is almost no research money in the US.

    I personally do well on a Phase III immune modulator, but it’s difficult to get (it is given by twice-weekly infusions, so you have to live near a study site.). Patients with my profile have improved on Vistide or Valcyte.

    If anybody in the pharmaceutical industry is listening, we don’t necessarily need ARVs, but we REALLY need more antivirals, period. While our government medical watchdog slept (CDC) a lot of us have become infected long-term with viruses – to the point where I was rendered a helpless invalid, to the point where we even have young people dying. Get creative.

    There are, after all, a million of us in the US alone. That number sends chills down the spines of insurance company execs, but it out to perk the interest of Big Pharma and venture capital (and FDA needs to lighten up on venture capital firms). I think the answer lies in creative treatments, not just ARVs. Either way, patients who have been sick and invisible for three decades in the US could use some serious medical intervention.

    My thanks to Ms. Benson for this intriguing interview.

  6. great writing mary ! I watch you & others, from ‘behind the seenes’, cause i have been to sick to partisapate.
    i also am a dr judy huge fan, w/xmrv +, along with the full list of all the other viruses ,bacteria & mycoplasms !
    dr judy id being ‘set-up’ !!
    years ago i did dr nicolson’s protical, and in 8 months i was almost back to ‘MYSELF’ of 10 yrs earilier(did it on my own w/ a caring dr @ city clinic, who i educated along the way and he wrote out my doxy scrips. but i KNEW i was dealing w/ the ‘big guys’–the Viruses, stelth viruses, and i was not going to start that w/o a doctor…………………………..10 later, Still waiting
    Blessing’s to you mary, for ALL u do for our community.w/Love

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