Topics covered in Dr. Charles Lapp’s March 30 Hunter-Hopkins Center Newsletter include the following three activities important to the ME/CFS & FM community. (To receive this and future HHC e-newsletters, send an email with NEWSLETTER SUBSCRIPTION in the subject line to firstname.lastname@example.org.)
1. Replication Study of Whittemore-Peterson XMRV Findings
“Glaxo Smith Kline, a pharmaceutical firm in Research Triangle Park, NC, has funded a new study that will evaluate CFS patients with characteristics similar to the Science paper. CFS patients known to have XMRV from the Science paper will be used as a positive control. This study is designed to estimate the prevalence of XMRV in CFS subjects (selected by the modified Fukuda criteria and the Canadian criteria) and healthy control subjects.
“Ethics board approval is pending, but we expect this study to begin shortly. GSK will obtain specimens for this study from [patients diagnosed by] Hunter-Hopkins Center (Charlotte, NC) as well as Drs. Klimas (Miami), Bateman (Salt Lake) and Gluckman (Philadelphia) in order to sample subjects from diverse geographic locations. Samples will be provided anonymously by the new SolveCFS BioBank, recently funded by the CFIDS Association…”
2. Solve CFS BioBank to Collect and Store Blood & Tissue Samples
“The SolveCFS BioBank will collect and store* a bank of biological samples (such as blood, tissue, cell, and DNA) and clinical information from individuals with CFS and healthy individuals (controls). Subjects must be aged 10 and older, from the U.S. and other countries. Specimens will be stored indefinitely at the Genetic Alliance BioBank laboratory in Washington DC. This ensures that individual privacy and confidentiality are protected and that samples are available to researchers whose research projects have been reviewed and approved by the CFIDS Association of America Medical Research Advisory Committee. Currently the SolveCFS BioBank [will collect specimens only from patients diagnosed/referred by] Hunter-Hopkins Center and three other sources (Drs. Klimas, Gluckman and Bateman) to insure that the proper diagnostic criteria have been applied, and thereby assure a heterogeneous study population.”
[* Note: The CFIDS Assoc., likely inundated by inquiries, comments: “there has been tremendous enthusiasm about the opportunity to participate in this type of ground-breaking research. However, until all the required institutional approvals are obtained by all parties required to initiate BioBank-based studies, the CFIDS Association of America is not able to share information or comment on reports initiated by others about studies being planned….” In the interim they suggest interested parties refer to their updated eligibility criteria – see “BioBank Study Requirements, current as of April 1.”]
3. Ampligen® Study Still Recruiting (Patients Cover Their Costs)
“Hunter-Hopkins Center is one of two sites in the USA currently participating in an open label study of Ampligen. Persons with CFS may qualify to receive Ampligen therapy. Details are available on the US government Clinical Trials website (ID NCT00215813). The Hunter-Hopkins program is described at www.drlapp.net/ampligen.htm. If you are interested in joining the Ampligen Study or you have more questions, contact Wendy Fallick (Research Coordinator) or Dr. Black at Hunter-Hopkins.”
Back issues of Dr. Lapp’s Hunter-Hopkins newsletters are archived at www.drlapp.net/news.htm.