Patients leapt for joy at the news suggesting that the WPI’s findings have been validated by two major institutions in the US but not everybody was happy that the information had been released in a way it was. The Whittemore Peterson Institute’s Facebook site posted a link to Dr. Raccienllo’s blog but refused to discuss the press release otherwise, citing the need for a prepublication embargo of scientific findings. The CFIDS Association didn’t post a link anywhere as they cited the same need. Both organizations either fund or produce research and need to maintain strict standards regarding scientific mores.
ESME – an Alliance of European professional researchers, felt no such compunctions, immediately sending a link out to all their subscribers and posting the press release on their website. Dr. Racienello immediately posted it on his blog but neither the ME Association nor MERUK nor Invest in ME, however, have reported on it nor does it appear that other news services have. It’s hard to imagine that the ‘scoop’ could imperil publication of an important paper but the episode does underscore the antagonistic relationship between a press that wants to expose everything and a research community for whom prepublication exposure can have dire consequences. Did the Dutch Journalists do us a favor?
Red Cross Report At the Zagreb Conference – Meanwhile other reports from the Zagreb Conference popped up. Roger Dodd, an official at the American Red Cross also gave a lecture on XMRV there in late May. Some of his points could presage a shift that may occur in how CFS is viewed in the future. For instance, after noting that CFS patients often have an acute infectious onset his outline states that outbreaks in the disease do occur – a well accepted findings amongst patients but something that’s quite controversial in the traditional research circles.
He also provided a list of infections that are putatively associated with CFS. What was impressive about Dr. Dodd’s list was it’s size; it contained enteroviruses, Epstein-Barr virus, cytomegalovirus, HHV-6 and 7, B-19 parvovirus, hepatitis C virus, HTLV (DeFrietas), spumavirus, Chlamydia pneumoniae, Coxiella Burnetti, Brucella and Toxoplasma.
He also several times noted the involvement of CFS support groups and the effects of patient advocacy going so far as to highlight a plea from what appears to be a person with CFS that people with CFS be banned from giving blood in the US.
Dr. Dodd’s assessment of the different possible outcomes for XMRV ranged from it being irrelevant (due to it being a contaminant) to a ‘Doomsday’scenario, at least from the aspect of the Red Cross. In the Doomsday scenario, researchers find that the virus
· does indeed cause dread diseases such as CFS and cancer
· that it has an extended incubation period; – this presumably refers to its ability, like HIV, to apparently be present for a long period of time before its effects are seen, making it difficult to easily spot an infected person and stop the transmission
· that it spreads rapidly
· that it’s, in fact, already present in much of the population
In the Doomsday scenario the cat is either already out of the bag or very difficult to keep in the bag because the virus spreads so easily and usually undetectably. From an official standpoint this would make the virus difficult to control.
He then noted that the Red Cross still needs much information; in particular, a Gold Standard test that can reliably detect XMRV and information on rates of prevalence in its donor population and determining what its risk factors are (i.e. is it just found in CFS patients or people with other diseases, or healthy controls?).
The Blood Study : Then Dr. Dodd provides some information on the National Heart Lung And Blood Institute (NHLBI) XMRV study . The study is using whole blood and plasma to look for XMRV in 400 samples from Reno (BSRI?) and 25 positive samples from the WPI and 25 controls. They are validating their PCR results using antibody tests
Was the Past Prologue?– If this report proves true one can look back in hindsight and see evidence that it was on its way given a uptick of positive reports over the last month. Several weeks ago Dr. Klimas reported a positive paper was on the way; a finding a Phoenix Rising Forum member reported was originally from Dr. Suzanne Vernon. Today, Hillary Johnson reported in a blog that two researchers have contacted her in the last few weeks stating that a major research paper confirming the Science paper will be published shortly and that it could push positivity rates in ME/CFS even higher.
It’s possible that the recent AABB announcement recommending that blood collection groups aggressively discourage blood donation by CFS patients, was prompted by these findings as well. Before the Fat Lady sings, however, about the association between XMRV and CFS, we need to see that research in print.