Thursday, June 2, 2011


You look like a perfect fit
For a girl in need of a tourniquet

Today Forbes' Dr. Steven Salzberg joined the XMRV naysayers, penning the piece "Chronic fatigue syndrome: virus hypothesis collapses further."  Salzberg took a step further, labeling Dr. Judy Mikovits a "pseudoscientist." He's the same Steven Salzberg who doesn't believe there's an autism epidemic but does believe that acupuncture is nonsense. Surely a front-runner for columnist Keith Olbermann's Worst Person in the World award, Salzberg is not exactly an outside-the-box thinker. 

Below is my letter to the editor:

As a science reporter and blogger, I was disappointed to read Steven Salzberg’s article. Dr. Salzberg, if you’d sit down and read all the “replications” of the 2009 Science study in their entirety, you’d realize they’re not replications. 

The essence of the scientific method is reproducing precisely the methods and patient cohort of the original study, something most of us learn in 9th grade science. 

None of these so-called replications meet that standard. The Levy study didn’t replicate the methods of the 2009 Science study.  The Centers for Disease Control's study and the British XMRV studies examined patients with idiopathic fatigue and depression, not CFS, which is a neuroimmune disease that causes acquired immune abnormalities, including natural killer cell dysfunction--the CFS counterpart to HIV’s T-cell depletion.

CFS also causes seizures, abnormal brain scans, rare cancers and autonomic dysfunction, leading to abrupt drops in blood pressure upon sitting or standing.

Both the CDC’s study and the British studies weeded out anyone with neuroimmune or autonomic dysfunction. The work of Dr. Leonard Jason at DePaul University has established that the CDC and the British scientists are studying the wrong cohorts. 

Moving on, the Mikovits study found antibody reactions to XMRV in patients. You don't get an antibody reaction to a contaminant.  Morever, only 4 percent of controls in the Mikovits study tested positive for XMRV, while 67 percent of patients tested positive. If XMRV were contamination, one would expect an equal distribution. 

Science seems hell bent on consensus, but as Harvard-educated physician and medical thriller writer Dr. Michael Crichton once pronounced: “Let’s be clear: The work of science has nothing whatever to do with consensus. Consensus is the business of politics. Science, on the contrary, requires only one investigator who happens to be right....”

Sadly, the history of science is replete with investigators who were discredited by the status quo but who were eventually proved right:  Galileo, Semmelweis, Pasteur, Ohm, Nott, Zweig and Rous, to name a few.

In 1982, Drs. Barry Marshall and Robin Warren discovered that H. pylori was the cause of stomach ulcers. In the early 20th century, there had been interest in an ulcer link to the spiral-shaped bacterium until a large 1954 U.S. study failed to find it in stomach biopsies, delaying the discovery for 28 years.

Whether Dr. Mikovits is right is anyone’s guess. But asking her to withdraw her paper before the truth is known is the antithesis of science.  Doing “replications” that aren’t bona fide replications is the antithesis of science. 

As far as patients taking anti-retrovirals, all drugs have risks, but several CFS patients I’ve interviewed have been helped by these medications.  Their natural killer cell numbers, for instance, have normalized and a few have largely recovered. Patients responding to anti-retrovirals would put a serious kink in the XMRV contamination theory, which is one reason some believe that these researchers are determined to get patients off them.

Given that physicians are now prescribing anti-retrovirals to healthy HIV-negative people in high-risk groups, I find it particularly unsettling that the researchers who’ve conducted these non-replication XMRV studies are admonishing desperate and dying CFS patients that they have to be wait for treatment. In fact, CFS patients have been waiting for decades; many have died waiting. There is not one approved drug for CFS--and none in the offing.  The government spends only $6 million a year on CFS, a million more than it spends on hay fever. 

Approximately one-third of the parents with CFS whom I’ve interviewed have children with autism. This is not chimera; there is a connection here.

Twenty years ago, the first evidence of a retrovirus in CFS patients surfaced at the Wistar Institute at the University of Pennsylvania.  Back then, the CDC refused to replicate the methods of Wistar’s Dr. Elaine DeFreitas. When the CDC couldn’t replicate her findings, the research died. Two decades later, it’s deja vu all over again.

I believe, Dr. Salzberg, that you’d do your readers a greater service if you would read the studies in their entirety and learn about the history of this disease, instead of spinning misinformation.


  1. Thanks for such a well written letter!

    I find you statement regarding CFS parents having autistic children interesting. I have both autism and CFS. My mother and sister are also autistic but show no signs of CFS or any other illness. I've found an extreme overlap of symptoms between my autism and CFS. Unfortunately, many still view autism as an abstract phenomenon with physiological connotations often scoffed at. Sadly, the autistic community that exists has been largely put off any sort of medical/scientific study fearing a cure would deprive them of their unique personalities.

  2. Thank you so much Mindy. The truth is something so many are afraid to speak and even less will listen to. You do both.

  3. I'm one of those kinks . My seizures are down by 75 % and I'm getting better every day . I've been on ARV's since February of last year .

  4. Excellent letter!!!! Thank you again for speaking for all of us out here in our beds.

  5. All I can say is wow! wow! wow! Great work.

  6. I'd rate this letter as another home run, Mindy!

  7. Wonderful piece ---much needed during these trying times. Thanks for all you do for the patient community!

  8. Excellent letter!!!! Thanks!!!!

  9. There was once a scientific consensus that human retroviruses simply did not exist. (See Table 1.)

  10. Fabulous find, Anonymous. Here's Table 1 from that study:

    Factors that led to consensus that human retroviruses did not exist

    1. Failure to discover them after an extensive survey by many investigators in the 1950s, 1960s, and 1970s.

    2. Ease of detection in animal models because of extensive virema.

    3. Difficulties in growing primary human cells.

    4. Results showing human sera with complement lysed animal retroviruses.

  11. no one has used the primer combinations magnesium concentration oligonucleotide concentration buffer composition salt concentration and annealing times and temperatures used in the Reverse transcription nested PCR assay used by Lombardi et al in discovering a polytropic xenotropic hybrid murine related oncovirus in 67 % of objectively diagnosed ME patients.Changing any one of these variables would account for the failure of a PCR assay to detect such a virus or a virus of the same family in the activated T and B cells of a sufferer of ME

    if so called scientists dont know this then they should really go back to school

    people like this idiot think that adhering to the scientific method is pseudoscience! That about says it all.He must have fresh air inside his head in the place of a neocortex

  12. I started reading Salzberg's blog and soon enough realized it was all rubbish. I have to remember to go to Forbes for finance, and never for science.

    I never did finish reading the article.

    ps. Shouldn't they retract the "human retroviruses don't exist" article? Just kidding, they shouldn't retract anything. The publications are the paper trail of science.

  13. Wonderful letter, Mindy.
    I agree almost with everything inside it.
    The jury is still out on this one, but many people are trying to mislead us to think that they have already stated their verdict - which is not true.

  14. Thanks for doing this for us Mindy - we are so lucky to have you fighting our corner.

    We desperately need the WPI to continue its research and I urge anyone reading this to find out about the Vivint charitable giving contest, in which the Whittemore Peterson Institute is a strong contender to win $250,000 if enough people vote for it on Facebook.

    A big effort is being coordinated internationally to support the WPI in this and every vote will count. The main phase of the contest begins on 14 June and daily voting continues for 11 weeks. It's worth opening a Facebook account just for this purpose.

    No-one else is helping us - we must help ourselves! Please everyone, join in. Here's the link:

  15. That Gallo paper is fascinating. We know that Levy, DeFreitas, and no doubt Mikovits know it intimately. The fight ain't over.

  16. If you want to help then donate to the WPI

    phoenix rising would be the last place I would ever consider donating to

  17. I loved the above comment made by someone about the Vivint Contest.

    But please consider not linking to Phoenix rising as the CEO has been a big contaminationist and is constantly bashing Dr. Mikovits.

  18. I am really sick of the Phoenix Rising bashing in the comments sections of blogs covering these topics.

    Everyone is entitled to their opinion, but I personally feel that vitreol may be misdirected.

    I really don't want to engage in a debate about it here, but felt someone should at least counteract the negative sentiment expressed in those comments.

    I feel that my health has benefitted from the information I get from Mindy's site, Phoenix Rising, and from the WPI work. Why can't one be a supporter of all of them simultaneously? I understand some feel they must be mutually exclusive, but not all of us feel that way.

    Thank you, Mindy, for your continued contributions in this desperate fight for survival we patients have had the misfortune to find ourselves in. I really appreciate your commitment to that sometimes forgotten, often neglected purpose of journalism - the pursuit of the truth.

  19. If anyone wants to donate to WPI research, please go to:

    Patricia Carter

  20. "You don't get an antibody reaction to a contaminant. Morever, only 4 percent of controls in the Mikovits study tested positive for XMRV, while 67 percent of patients tested positive."

    Who says you don't get an antibody reaction to a contaminant? Some people have antibodies to gliaden, which could be considered a 'contaminant' if one has celiac or gluten intolerance.

    The second point has more validity, but could be due to the possibility that CFS samples were tested more than controls.

  21. Kelly, gliaden is not a contaminant. It's a glycoprotein found in wheat and some other grains, so I think you're confused about the definition of a contaminant. And it is a scientific fact: you can't get antibodies from a contaminant.

  22. The problem with human antibodies to pathogens is they are based on targeting relatively short amino acid sequences. Many proteins in the body, either endogenous or introduced (such as from gut bacteria) might be targets of the same antibodies. So the presence of an antibody to XMRV might not be because of XMRV at all...

  23. They say that the antibody test is picking up "another virus". Has anybody figured out what the heck virus they are talking about? It seems that no one knows. If it is indeed picking up something else, then what EXACTLY is it picking up?

  24. Patient and controls were reportedly handled the same. Give it up contaminationists.


Comments are welcome and moderated for appropriate content.