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 "Rare Move" to Halt Publication:  Did U.S. Health
Department Make the Right Call?


(Craig Maupin at 6-30-10)   The Wall Street Journal reported today that senior officials at the Health and Human Services Department (HHS) halted publication of two conflicting studies on XMRV and chronic fatigue syndrome (CFS).   A CDC study found no XMRV in its CFS samples, while a study led by renowned virologist Harvey Alter at the NIH and the FDA found a strong link between XMRV and CFS.   Much like the term chronic fatigue syndrome (CFS), the phrase "held from publication" certainly sounds benign.   But "held from publication" is never benign.   Here's why.

The scientific community is responsible for sorting out contradictory results, not the senior leadership at the U.S. Health Department.   The Wall Street Journal correctly called the effort to pull publication a "rare move".    Let's not mince words about the health department's "rare move".    Rare moves often occur when much is at stake.

 So, what is at stake?   The HHS is poorly positioned for an association between a virus and CFS.   Weeks earlier, the CDC CFS research program's Elizabeth Unger demonstrated no retreat from the CDC's conceptualization of CFS as a metabolic syndrome and stress disorder. For a decade, an expert on alcoholism, Eleanor Hanna, has overseen the CFS program at the NIH.   The CFS research program has dwindled to one of the lowest funding levels of any NIH-tracked illness.

Dr. Terrell Hoffeld, who oversaw peer review for CFS at the NIH, spoke candidly to The CFS Report in 2005.    Hoffeld believed that "everybody was looking for an infectious agent. A lot has moved on in terms of more palliative directions, ways in which patients can be made to feel more comfortable, experience less pain, less anxiety."  Hoffeld's conviction that evidence for a role of infectious agents role in CFS had "moved on" was evident.  What may have been less evident was that Hoffeld's panel enforced this mindset.   Few, if any, grants for immune dysfunction or viral research survived Hoffeld's tenure.   Though many applications dealing with immune or infectious topics for CFS were submitted, the drought continued for roughly 15 years.

What is the bottom line?   For years, the U.S Health Department has been steeped with a bias toward CFS.   If a large portion of CFS patients carry XMRV, a virus that may have now spread into 3-7 percent of the population, the Health Department has done little to investigate the matter.    This past year, even a conservative decision to withhold blood donations from those with CFS ---until XMRV's role in CFS was understood ---was shelved.   If XMRV is the cause of a disabling illness (and that is yet to be proven), the health department is up against it own history -- a history of blocking grants, papers, and policies to protect the public. 

Up until now, discussion on conflicting results in studies dealing with XMRV and CFS has focused on differences in testing methods. The Whittemore Peterson Institute criticized recent studies for not using the same methods as those used in their original paper finding a link between CFS and XMRV.   Differences in testing methods could provide a quick, easy answer for current (and future) conflicting results on XMRV and CFS.   It's a simple hope.   But having watched CFS research for 25 years, it's too simple.

An oceanic gulf exists between the research teams producing conflicting results on XRMV. Leadership at the Whittemore Peterson Institute (WPI) has been outspoken about their conceptualization of CFS.  Annette Whittemore hired Vince Lombardi, who had worked with the link between Rnase L dysfunction and CFS.  She also hired Judy Mikovitz, a retrovirologist.   These decisions speak volumes.  When the WPI sees someone with CFS, they see an extremely disabled person with a severe immune disorder. They base that belief on published laboratory findings, such as abnormalities Rnase L pathway, elevated viral titers, and cytokine expression.

 Contrast this view with the history of CFS research at the US Health Department.  At the CDC, William Reeves and Elizabeth Unger's beliefs, associations, and past research in CFS are also well-known. Their Wichita and Georgia samples are overweight, stressed, emotionally troubled, and highly active.   The CDC's CFS samples, understandably, demonstrate few, if any, immune abnormalities.   The samples fit Unger and Reeve's views on CFS.    Should anyone be surprised if these two research teams find different outcomes?   The attributions and beliefs of the researcher matter.   They are the very foundation of his/her research. 

Recently, several journalists implied that science in strengthened when prevailing human consensus is cemented and enforced.   But science is never synonymous with judiciously-enforced groupthink.  Science moves forward when human consensus is continually checked against physical  reality.  

   To date, there are over a thousand papers finding unique immune dysfunction and viral association in CFS.   The health department's response to CFS hasn't matched this reality. 

     The decision to block publication was a continuation of an old, tired mindset.    Alter's paper should be published.   More importantly, the tight-fisted mindset that led to the paper's blockage and years of drought for CFS grant proposals should be dealt with -- strongly, unequivocally.    One paper blocked from publication is more than a "strategic pause"; it is a cause for a concern.