Hunter-Hopkins ME-letter

December 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

Contents

            XMRV Update

   Summary

   New study

   Ampligen and XMRV

Review Courses for Persons with CFS/ME and FM

Research Opportunities

Dear ME Letters

Hunter-Hopkins Is On Facebook  

Best Wishes for a Happy, Healthy, and Successful New Year!

*              *              *

XMRV Update

Xenotropic Murine leukemia virus-Related Virus (XMRV) is an authentic and novel retrovirus that was first discovered in men with hereditary prostate cancer, but was subsequently described in up to 97% of individuals with CFS as well (Lombardi VC, Science, 23 Oct 2009). It is not clear, however, if XMRV causes CFS or is just associated with CFS (that is, it likes to settle in persons with CFS). 

Controversy has developed because four subsequent studies from the UK (2), the Netherlands, and the US ((Switzer W, Retrovirology) failed to confirm the presence of XMRV in persons with CFS or in healthy controls.  An elegant review of the subject (Silverman RH, Nature Reviews, June 2010) pointed out that this was not unexpected since these three groups used a variety of different techniques and human subjects. In October 2010, however, scientists at the FDA and NIH concluded from their research that an XMRV-like virus is found in CFS patients (Lombardi and Alter, Proceedings of the National Academy of Sciences). 

Based on findings by Drs. Lombardi and Alter, the American Association of Blood Banks has recommended that CFS patients be discouraged from donating blood.  [Note:  Hunter-Hopkins has always cautioned against this, as well as organ donation.]

On 12/20 the journal,  Retrovirology,  published four studies and one editorial possibly linking WPIâs XMRV findings to laboratory contamination.  This possibility had already been addressed by Dr. Mikovits in her original Science article, and has mostly been dismissed by knowledgeable scientists. 

Although many antiviral drugs have been considered for treatment of this virus, only four are currently considered Îpossibly effective.â  So  at this time there is no known treatment.  However, Hemispherx Biopharma reported some promising news at the First International Workshop in XMRV (Bethesda, MD, September 2010).  Blood samples from an Ampligen trial performed from 1988 until 1992,  demonstrated that 33.7% of the subjects were positive for XMRV. Testing was provided by the Whittemore-Peterson Institute. Those who were XMRV negative had more severe illness based on  activity monitoring, their ability to maintain daily living skills, and a self-rated performance scale (KPS).  Those subjects who were XMRV positive and received Ampligen showed a greater improvement than those who were negative or did not receive Ampligen. This suggests that Ampligen therapy might be helpful in persons with XMRV, or that Ampligen works best in persons who are XMRV positive.  

Hemispherx medical director, Dr. David Strayer, told Dr. Lapp that the company is strongly considering a new study of Ampligen in persons with XMRV, and possibly using previously stored serum samples to see if XMRV is suppressed or disappears in persons treated with Ampligen.  

Courses Offer A Review of Management Tactics for CFS/ME and FM

While you are pondering your 2011 New Year Resolutions, consider a review of how well you are managing your CFS or FM.   Here are two simple ways to approach this.

First, Dr. Lapp provided an overview of the Hunter-Hopkins management plan (The Stepwise Approach) in his September webinar for the CFIDS Association.  Slides (with written summary) are available in PDF format  at http://cfids.org/webinar/lapp-slides.pdf .  Or, if you prefer to listen and watch, the whole webinar is available at http://www.youtube.com/user/SolveCFS#p/a/u/1/sw5HcimeSOY .

The second option is the combined project of Dr. Bruce Campbell and Dr. Lapp at www.TreatCFSFM.org. This website was designed to provide a self-instruction course for individuals who have CFS/ME or FM and cannot find a knowledgeable medical provider.  The course teaches you --- step-by-step --- how to assess and then manage your illness.  The ãSelf Appraisalä section is ideal for formulating those New Year Resolutions!  Once you identify areas of weakness, then you can Îwalk throughâ the rest of the program and learn how to cope better.  

Good luck, good health and much happiness in 2011!

Research Opportunities

 We have two research opportunities currently available at Hunter-Hopkins:

 The Ampligen open label cost basis program continues to attract new participants. We currently have five PWCs actively receiving Ampligen (check out the ãNew Ampligen Diariesä blog !), several awaiting approval,  and one on temporary holiday, but the program is accepting new applicants on a regular basis.   If you are interested, go to our website, click on  ãResearch,ä then  ãAmpligen,ä or just click here.

 There are a limited number of successful therapies for the orthostatic issues so common in CFS/ME. One of them ö midodrine or ProAmatineú has been widely used by persons with Neurally Mediated Hypotension, but is being challenged by the FDA.  It will likely be removed from the market.   A new drug for the treatment of Neurally Mediated Hypotension in persons with CFS is currently being studied at HHC.  We will be enlisting new subjects in 2011.  If interested, details can be found at the Clinical Trials site (http://www.clinicaltrials.gov/ct2/show/NCT00977171?term=droxidopa&rank=6)

Dear ME Letters

Have you ever wanted to just vent and tell others how CFS/ME or FM has impacted your life?  One of our HHC friends has developed a Facebook site for fellow suffers to ãunload.ä   Itâs a cathartic experience!   Others can participate also --  perhaps your child, spouse, or significant other.  (And you can remain anonymous if you wish.)   If you have a counselor or therapist, share this page with them as well so they can pass it along to other patients.  Even if you write a comment or short letter, there are 3 easy ways to post your missive:

• á         Post it on the DearME community page on Facebook

• á         Privately email your comments to dearme_cfs@yahoo.com

• á         Or surface mail to Dear Me, 17330 Tamarack Drive, Williamsport MD 21795.

Weâll look for you on ãDearMEä !

Hunter-Hopkins Facebook Page

Donât forget to bookmark the Hunter-Hopkins site on Facebook.  This media source is updated by Dr. Laura Black and not only provides ways to meet others with CFS/ME/FM, but Dr. Black tries to keep you up-to-date with the latest information!  Find us by logging on to Facebook, then searching ãHunter-Hopkins Center.ä   See you there!

Happy Holidays!

Best Wishes for a Happy, Healthy, and Successful New Year

from the Doctors and Staff at Hunter-Hopkins!

This newsletter is published periodically by Hunter-Hopkins Center, P.A., 7421 Carmel Executive Park,  Charlotte, North Carolina 28226, USA..  Telephone (704) 543 9692, Fax (704) 543 8547. 

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