STEVEN SALZBERG'S PSEUDOSCIENCE

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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.

Letter in Response to WSJ Article

Last night the Wall Street Journal published Amy Marcus's article "Chronic-Fatigue Paper Called Into Question."  Here is my response:

As a science reporter and blogger, what I find most perplexing about the Science editors asking Dr. Mikovits to withdraw her study is that the jury is clearly still out. While some laboratories haven’t found XMRV in CFS patients, others have. The ones that haven’t found XMRV failed to replicate the methods and patient cohort of the original Science study, making their findings questionable. The laboratories that have found the retrovirus include a study by National Institutes of Health Lasker Award winner Dr. Harvey Alter and the FDA’s Dr. Shyh-Ching Lo. Their study found variants of XMRV in 86 percent of patients and 7 percent of apparently healthy controls. All the controls were blood donors, signaling a contamination of the blood supply.

In addition, the original Science study was coauthored by the Cleveland Clinic and the National Cancer Institute, both of which also found the retrovirus in CFS patients. Moreover, other laboratories have found the retrovirus in CFS patients but have not yet published their findings. And, finally, respected laboratories have found the retrovirus in prostate cancer patients as well, making the contamination theory less than likely.

Given that others have replicated Mikovits’ findings, given the high stakes in a population that has no treatment after 30 years of government neglect, given that many CFS patients have died from the disease and many others experience a living death, I find it problematic that Science has asked Dr. Mikovits to withdraw the paper.

Some see this move as the first step to shutting down current NIH-sponsored XMRV CFS studies, as the government did 20 years ago, when the first evidence of a retrovirus in CFS patients surfaced at the Wistar Institute at the University of Pennsylvania. Back then, the Centers for Disease Control refused to replicate the methods of Wistar’s Dr. Elaine DeFreitas. When the CDC couldn’t replicate her findings, the research died. Twenty years later, it’s deja vu all over again.

Science seems to be 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....”

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.

Round 3 for WPI and Chase; Healkick's New Features

From ME/CFS patient Justin Reilly:

There is a silver lining in winning less than $100K in that we are eligible for the $200K discretionary spending prize. (There is also an additional $300K in discretionary spending for which I believe all the charities in round 2 are eligible).

I sent the following letter in case anyone wants any ideas. Thanks to Ann from whom I borrowed some wonderful phrasing!

Dear Chase Community Giving,

I am a Chase customer. I support Whittemore Peterson Institute in the CCG contest. I am writing you to let you know how great WPI is and urge you to award them some of the discretionary contest funds.

I have had ME/CFIDS for ___ years. 17 million people worldwide have this devastating neuroimmune disease, with virtually no viable treatment options and little bona fide research.

That is, until the Whittemore Peterson Institute recently came along. One family, fighting for their daughter's life, footed the bill and opened a state of the art Institute to research neuroimmune disease. As the New York Times noted, comparing WPI to Michael J. Fox's Foundation and others, "Harvey and Annette Whittemore were not the first to start a research foundation out of desperation to find answers for an incurable disease... But few if any of the private groups have produced notable results as quickly as the Whittemore Peterson Institute has."

Unfortunately, the Whittemore family can no longer cover all of the Institute's costs alone. WPI needs help raising money that will all go toward desperately needed research for a cure. This is where you can help. Please award this most deserving of charities as much of your discretionary funding as possible!

Thank you for your consideration.

Sincerely,

http://apps.facebook.com/chasecommunitygiving/rules

(Charities awarded a Round 2 grant of $100,000 or more in the current program are not eligible to receive the $200,000 Advisory Board grant)

 ***

Healkick, the forum for ME/CFS patients under 40, has added new features:

• IM Chat (private and public). "Many patients have said it’s the first time they’ve actually talked to another patient," says Cari Lea, who co-founded Healkick with Joey Tuan. 

• Language friendly. You can choose the language of your choice to read posts. No more struggling to read the forum in English.

• Patient Map.  "Every member that joins the site enters where they live," explains Cari Lea.  "It all gets put on our Patient Map. So patients can see who lives near them, and find patients they can meet up with or at least find some local support--something that is very hard for most of us to find."

Facebook and the Government

A former high-ranking government worker has told CFS Central that in his experience what gets the government’s attention is, yes, Facebook. In his view, the government has learned to ignore phone calls, faxes and emails. But Facebook campaigns, he said, “panic” them because they’re viral, embarrassing, and leave an indelible footprint.  Ideally, a campaign could be started directly on the government's own Facebook pages.