HUNTER-HOPKINS |
CENTER |
Hunter-Hopkins ME-letter
March 2010
Hunter-Hopkins Center, P.A.
7421 Carmel Executive Park Drive, Suite 320
Charlotte, North Carolina 28226
Tel. (704) 543 9692 á Fax. (704) 543 8547
You have probably already heard that Dr. Dan Peterson and the Whittemore-Peterson Institute reported in Science ( Oct 2009 ) that 97% of blood specimens stored since the CFS outbreaks of 1984-1986 were positive for a new retrovirus called XMRV. This finding raised several questions: (1) Is this for real? (2) Does XMRV just like people with CFS or does it cause the illness? (3) And if it causes CFS, what drugs can treat it?
Sadly, subsequent studies have failed to confirm the association of XMRV with CFS (Erlwein, 2010; Groom, 2010, van Kuppeveld, 2010). Many argue that follow-up studies are tainted by the patient population studied and the methodologies used. For example, XMRV may only occur in a subgroup of severe CFS patients. . Subjects from the Science paper had disabling fatigue, cognitive deficits, and reproducible immunological abnormalities (such as abnormalities of RNase L, low natural killer cell cytotoxicity, and elevated cytokines).
XMRV may also have a distinct geographical distribution. For example, in prostate cancer patients, XMRV has been detected in North America while not detected in European subjects. Two of the negative CFS studies were performed in the United Kingdom (Erlwein, 2010; Groom, 2010), where patient selection is different than in the USA.
Finally, the negative papers may have used diagnostic methods to detect XMRV that were either different or deficient.
To help resolve this quandary, 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 Hunter-Hopkins Center 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 (see next article).
So far no one has been able to corroborate the Whittemore-Peterson results, but we remain hopeful that by choosing the right subjects and the right techniques, GSK will be able to confirm Dr. Petersonâs findings. Then work can begin to understand how XMRV affects PWCs, and how we could possibly treat it.
Stay tuned ·
SolveCFS BioBank
For many years patients have asked us if they could donate blood or other body parts to CFS science; and many researchers have sought easy access to specimens from persons with CFS. Until now there was no such repository of clinical material. The CFIDS Association of America, recently voted to establish and fund the SolveCFS BioBank. 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 is receiving specimens from only 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.
If you are willing to support CFIDS science and provide a sample here are the requirements:
á You must have been diagnosed with classical CFS by Dr. Lapp or Dr. Black
á The onset must have been abrupt or semi-acute (over a few weeks), not lifelong or slow in onset
á Ages 10 and up
á You must have classical post-exertional malaise and significant cognitive deficits
á You may not have bipolar or severe depression
á And Dr. Lapp is discouraging samples from patients who currently use Ampligen, Kutapressin, Nexavir, Isoprinosine, antivirals or immunosuppressant drugs, because these could affect the final results.
If you have questions or believe that you qualify, contact :
Gloria Smith, BioBank Coordinator
The CFIDS Association of America
Phone: 704-365-2343
Email: biobank@cfids.org
Mailing address: PO Box 220398, Charlotte, NC 28222-0398
She will provide a questionnaire and then a sample kit that you can bring to the Hunter-Hopkins Center, your local physician, or a commercial lab to have drawn. Please note that your physician or a commercial lab might charge a small fee for drawing the sample, and there is no reimbursement to you from the BioBank. This is strictly a gift that you provide so that CFS science can proceed.
Please help us Solve CFS !
We Are Now on Facebook!
Dr.
Black is heading up a new initiative to involve the patients and friends of
Hunter-Hopkins on Facebook, the highly rated social media site. If you are
interested in joining us in regular conversation, go to
www.facebook.com and register today. Then search for ãHunter-Hopkins
Centerä and join the fun!
Calling For Patients: Ampligen Study Is Still Recruiting
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 at: http://www.clinicaltrials.gov/ct2/show/NCT00215813?term=00215813&rank=1
The Hunter-Hopkins program is described at http://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.
Tips From Other Patients
Now that the Summer heat is imminent, many of you will be looking for ways to stay cool. M.R. (Fort Mill SC) keeps Huggies Calmingú on hand. These little body wipes have a faint lavender scent and always feel cool, she explains. They can be used to cool the face or neck, and maybe even mop up a little perspiration.
This email newsletter is published periodically by Hunter-Hopkins Center, P.A., 7421 Carmel Executive Park, Suite 320, Charlotte, North Carolina 28226, USA. Telephone (704) 543 9692, Fax (704) 543 8547.
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