Tuesday, May 31, 2011

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.

Monday, May 30, 2011

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.


(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."

Wednesday, May 25, 2011

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.

Thursday, May 19, 2011


Ailing biologist Dr. Alfred Kinsey pleaded to A & P supermarket heir George Huntington Hartford II in the 1950s for a research grant to cover his groundbreaking research into human sexuality. “We need money,” Kinsey told Hartford in the film Kinsey.  “We need someone to give us money.  You have no idea what I’ve had to endure just to obtain the same rights other scientists take for granted.  My funding has been slashed, my name has been dragged through the mud in every newspaper and magazine across this country…. We’re broke.  I’m not sure how much time I have left.  Help me.  I have to get it all on the record.”

Hartford refused to give Kinsey the grant:  He found the subject matter too scandalous and controversial.

Sound familiar?

If enough ME/CFS patients vote in round two of the Chase Community Giving contest, they can help ensure that WPI gets the money it needs for ME/CFS research.  

1. Go to facebook: http://www.facebook.com
2. Copy and paste this URL: http://www.facebook.com/ChaseCommunityGiving?ref=ts
3. Click the "like" button (to the right of "Chase Community Giving" at the top. If you’ve  already "liked" Chase Community Giving, you won’t see the “like” button, and you can skip to the next step.
4. Copy and paste this URL: http://tinyurl.com/wpiround2  Click the big green "Vote & Share" button to cast your vote.