Phoenix Rising: The State of Knowledge Workshop Excites / Singh XMRV Study Disap

[Guest guest]

It's been another busy month. The big event of the month, of course, was the two-day NIH State of the Knowledge Workshop - the first NIH sponsored research conference on ME/CFS in eight years. In contrast to the last conference this conference was packed full of CFS researchers. Overviews of the conference sessions will be coming out over the next month.

STATE OF THE KNOWLEDGE WORKSHOP

Mikovits-Coffin Debate - The first session on XMRV was - not surprisingly - the most explosive, with Dr. Mikovits firmly asserting the legitimacy of the XMRV finding and Dr. Coffin asserting just as firmly that the original finding was the result of contamination. Thankfully Dr. Harvey Alter was on board to skillfully moderate a complex and confusing subject.

Pathogens II: Enteroviruses and Epstein Barr Virus - Dr. Glazer presented his concept of a smoldering atypical herpesvirus infection, perhaps associated with stress, and Dr. Chia presented his finding suggesting that another kind of atypical enteroviral infection is present, that has spread enteroviral DNA throughout the body.

Bad Wiring? the Systems Biology Session - The Systems Biology session was perhaps the most intriguing of the Workshop, as Gordon Broderick, 'Raj', and Kelley suggested ways that large systems may have gone awry in CFS. Broderick showed that not only was he able to distinguish three different courses of ME/CFS, but he was also able to do so using just a few immune markers. Meanwhile 'Raj's' work, using different techniques, highlighted a similar area of

dysfunction. Dr. Kelley, on the other hand, suggested that bad wiring in the brain could result in even small insults being magnified in ME/CFS.

XMRV

The Singh Study Strikes Out - The year-long Singh study unfortunately failed to find XMRV in any ME/CFS or healthy controls despite using nine tests, including several used in the original Science paper and examining some patients who had repeatedly tested positive for XMRV at the WPI. The authors stated that their results indicated that XMRV was not found in CFS. The response from the WPI and the co-authors of the original Science paper is coming in the form of a letter to the journal that published the paper. Several major studies remain, including a Levy culture study that is expected to be published soon.

THE CDC

Letter to Dr. Unger- The Board of Phoenix Rising released its letter to Dr. Unger, the new chief of the CDC Research group, asking her (among other things) to change the name (to ME/CFS), abandon the Empirical Definition, collaborate with outside researchers, focus on figuring out the reasons for post-exertional relapse, and incorporate stressors into their testing protocols. Also check out an article asking just Who is Dr. Unger?

M.A.D. About ME/CFS: the May Advocacy Project

Lastly, check out the M.A.D About ME/CFS project: a series of daily suggestions on How to Make A Difference in ME/CFS in the Month of May.

The Facebook Day Childrens Day May Awareness Campaigns Day Lobby Day!

Support Phoenix Rising