Monday, August 15, 2011
The International ME Association (IMEA) and patient advocate and IMEA member Keith Baker have nominated Dr. Joan Grobstein, a neonatologist with ME, to sit on the Chronic Fatigue Syndrome Advisory Committee (CFSAC). A graduate of Harvard College and University of California at Davis Medical School, Grobstein was serving as a neonatologist at Children’s Hospital of Philadelphia and the University of Pennsylvania when she became ill with ME more than a decade ago. She has testified before the CFSAC committee several times, most recently last spring (see clip at the bottom of this post).
Baker says that Grobstein’s experience both as a patient and a medical doctor is a good blend of attributes that no one else on the committee has. “And that’s a perspective that the committee needs,” he says.
Grobstein says she decided she wanted to join CFSAC because the current government response has been “inadequate. Access to care is extremely limited, and there is little funding for research into the causes and potential therapies for the disease,” Grobstein explains. “Patients have waited far too long for progress.”
The deadline for CFSAC nominations is August 17th. A former high-ranking government worker told CFS Central last spring that in his experience what gets the government’s attention is 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 endorsing Grobstein’s bid could be started today.
Posted Monday, August 15, 2011
Thursday, August 4, 2011
Blood Working Group
Results Expected in a Month
Dr. Michael P. Busch, director of the Blood Systems Research Institute, said today in a telephone interview with CFS Central that his institute began this week to break the codes for the Phase III study of the XMRV Blood Working Group. “We expect in the next month to preliminarily disseminate the findings,” Busch said. The Phase III study is evaluating the specificity and sensitivity of different assays in detecting the retrovirus XMRV, first discovered in ME/CFS patients in October 2009 by the Whittemore Peterson Institute.
How the Blood Working Group plans to publicize the results will be determined later this month, when the Blood Working Group scientists have their next phone conference. Busch offered three possible ways of publicizing the preliminary findings: in a peer-reviewed journal; at a conference; or in a press release.
“The Working Group will have to decide whether we put out a general public announcement summarizing the findings [making sure] that it would not undermine the scientific, peer-reviewed publication. Major journals are careful about embargoing findings. We’re working on a paper, pending the findings, so that we can plug them in and submit the paper.”
However, “definitive” dissemination will be through publication in a major journal, Bush clarified.
Researchers have examined whole blood, PBMC’s (peripheral blood mononuclear cells, which are cells with a nucleus, key players in the immune response), and serology (antibody testing). Several labs participated, including those at the Whittemore Peterson Institute, the Food and Drug Administration, National Cancer Institute, and Centers for Disease Control, plus the commercial labs Abbott and Gen-Probe.
The scientists examined the blood of ME/CFS patients who were positive in the Lombardi and Lo papers, as well as pedigreed negative control donor samples and spiked positives. Several samples from about 70 different subjects were tested using at least 15 different assays.
“Our Phase IV and other planned studies of donor and recipient infection are contingent on results from Phase III documenting reproducible and specific detection of virus/antibody,” Busch said.
Posted Thursday, August 04, 2011