HUNTER-HOPKINS |
CENTER |
Hunter-Hopkins ME-letter
December 2008
Hunter-Hopkins Center, P.A.
10344 Park Road, Suite 300
Charlotte, North Carolina 28210
Tel. (704) 543 9692 á Fax. (704) 543 8547
Happy Hanukkah, Merry Christmas, and best wishes for a happier, healthier New Year!
Sherry, Wendy, Tracy, Dr. Black, Dr. Lapp, Danielle, and Pam
It has been a while since the last newsletter went out (for which we apologize!), but until recently there has been very little to report.
We hope that you will find something of interest in the following articles.
Please Help Support Research!
FDA Approves Cymbalta
A New Dietary Research Study For Female Patients With CFS/ME
Montoyaâs Valcyte study
Drug Trials to Begin at HHC
Resources for Your Primary Physician
A New Test to Diagnose Persons with CFS/ME and FM
A Moment of Hope
Note To Subscribers
Please Help Support Research!
Past research on CFS/ME has been mostly government-funded and government-driven. So far studies have focused more on epidemiology and etiology, while patients and providers have been more interested in treatment and a biomarker. The CFIDS Association has offered grants to researchers in the past, and has launched a new initiative to raise $1-million for CFS/ME research. The Association has hired an incredibly empathetic and effective researcher, Dr. Suzanne Vernon, to oversee future research grants. No other agency or group has expended as much time and energy in support of persons with CFS/ME (PWCs) than the CFIDS Association. It is clear that government funds have not and will not sponsor the kinds of studies that you and I would like, so wonât you please join me in giving whatever you can afford -- $5 or $10 or $25 or $200 ö to the CFIDS Association Campaign to Accelerate Research?
For more information click on http://www.cfids.org/about/eblast08-lapp.asp .
Remember, it doesnât matter how much you can give. Monetary gifts ö large or small ö from many people will add up. Letâs show the CFIDS Association that friends of Hunter-Hopkins can make a difference!
FDA Approves Cymbalta (duloxetine) for Fibromyalgia:
Our office participated in a Lilly research study on the drug Cymbalta (duloxetine). This study subsequently led to the approval of Cymbalta for the treatment of FM. Cymbalta is also helpful when depression is present. More details are available at ProHealth.com (click here), but in summary, Cymbalta increases serotonin and norepinephrine in the central nervous system, which is thought to reduce pain as well as depression and anxiety. It provides another treatment option for the pervasive pain of FM.
Hunter-Hopkins participates in these studies in order to provide the most advanced therapies for our patients and to collaborate with world leaders in the study of FM and CFS/ME.
Staci R. Stevens is the Founding Executive Director of the Pacific Fatigue Laboratory in California. She recently contacted Dr. Black about a CFS/ME research study that is seeking participants. If you are willing to participate in this study please contact Alexandra Caspero, who is a graduate student at the University of Pacific. Her study is entitled ãUsual Dietary Intake among Chronic Fatigue Syndrome Patients,ä which she assesses nutritional intake. She is in need of female CFS/ME patients between the ages of 18 and 65.
If interested in participating, contact Alexandra at cfsstudy@pacific.edu, or (209) 946 7606, or fax (209) 846 3902.
HHV6 has long been suspected to be involved in CFS/ME, but is it a cause, a contributor (perpetuator) of illness, or an innocent bystander? Dr. Jose Montoya (Stanford University School of Medicine) has researched and studied valgancyclovir, otherwise known as Valcyteú. He studied 12 persons with virally induced fatigue and cognitive dysfunction. In this study, each person was monitored and treated with Valcyteú over a 6-month period. One individual participated for three months only. What he found was that 9 of those 12 individuals showed significant improvement in fatigue and cognition. ãFive of these had elevated EBV titers (VCA-IgG, EBNA, or EBV-EA), 3 had both elevated EBV and HHV-6 serologies, and one had neither. None had HHV-6 elevations alone.ä (Note: it was not certain if any of these patients did indeed have CFS/ME.)
To settle the CFS/ME issue, Roche Pharmaceuticals sponsored a formal double blind placebo controlled study to be managed by Montoya at Stanford. The formal study was disappointing. While Valcyte modestly improved cognition, there is little evidence of improved energy, fatigue, pain or other parameters in persons with CFS/ME. Details at http://www.hhv-6foundation.org/
or http://www.hhv-6foundation.org/Baltimore-CFS-Lay.pdf
We strive constantly to be at the forefront of therapy in hopes that our patients will benefit first! If you have an interest in any of these studies talk to Dr. Lapp or Dr. Black at your next visit, or contact Wendy, our research coordinator.
Many of our patients complain that their local or primary providers know very little about CFS/ME/Fibromyalgia. There are now two current sources for them to learn about these illnesses, so make your doctor aware of these websites:
Dr. Lapp has been working together with Dr. Bruce Campbell to develop a program that will provide a basic approach to the diagnosis and treatment of CFS/ME. The goal is to provide a brief but adequate resource for doctors who are not familiar with CFS/ME, and a basic treatment plan for persons with CFS/ME who do not have access to a CFS/ME specialist. The doctorâs guide has been approved by the International Association for CFS/ME and appears on the IACFS website (http://www.iacfsme.org/ ). This effort is ongoing, but our ãfirst draftä website is now available at www.CFStreatment.info. Doctors should click on ãQUICK START GUIDE,ä and patients should click on ãSELF HELP PROGRAM.ä The latter is a medical guide designed to go hand-in-hand with Dr. Bruce Campbellâs existing CFIDS and FM Self Help Program at www.CFIDSselfhelp.org.
More recently, Dr. Lapp co-authored an introductory continuing education course for a nationally-recognized website, MedScape. The project was sponsored by the CFIDS Association, and within the first month of publishing (November) over 5500 providers had taken the course! Have your provider go to http://cme.medscape.com/viewprogram/17442 .
One of most frustrating aspects of CFS/ME/FM for primary care physicians is the lack of a blood test. Without laboratory confirmation, many are unwilling to diagnose or treat CFS/ME or FM. The search for such a test, however, has been akin to the search for the Holy Grail ö not very fruitful!
Estabaliz Olano and other researchers at Progenika BioPharma (Barcelona, Spain) recently applied for international patents on ãA Diagnostic Method for FM or CFSä. Progenika researchers have identified specific genetic markers (positions of single nucleotide polymorphism, or SNPs) that can be used for reliably determining FM and CFS phenotypes.
This process was discussed two years ago at the IACFS Scientific Conference in Fort Lauderdale. From a pool of 2000 subjects they assessed 186 women with FM and 217 women with CFS/ME. These subjects were stratified by special questionnaires into ãsevereä or ãmild-to-moderateä cases. SNP profiling was able to discriminate the severe cases from less severe cases of CFS/ME. Also 15 SNPs were identified that separated PWCs from persons with FM with 53% sensitivity and 95% specificity. So perhaps now we have a marker for these conditions! (See www.tinyurl.com/54u2g3 for more details).
ãIf you cannot do great things, do small things in a great way.ä
If you havenât been to our main website recently (www.drlapp.net) , be sure to check out new changes in ãNewsä and ãResearchä !
The Hunter-Hopkins ME-letter is published periodically -- but not regularly -- as pertinent information becomes available. Subscribers will also receive urgent bulletins of interest to persons with CFS/ME and FM.
If you wish to unsubscribe, send an email to drlapp@drlapp.net with the word ãunsubscribeä in the subject box.