Charlotte CFS/ME/FM Support Group Newsletter

for April 15, 2013

 

Hi Everyone,

Dr. Myra Preston wasn't able to speak last month due to illness but we are thrilled to have her able to speak at this month's meeting, Thursday, April 18th, 7-8:30 PM.  If you'd like to read the details of her treatment, just refer to her web site at: 

 http://www.siberimaging.com/about.html .

Our meetings are always the 3rd Thursday of the month, which means this Thursday, February 21, at 7:00 PM -- 8:30/9:00 PM.

I am awaiting news of what our May and June meetings will offer. This will be announced in a future newsletter.

 

**************** About our Meetings ***************

As always, our meetings start at 7:00 PM and wind up around 8:30-9:00 PM at Sharon Presbyterian Church, located 0.8 miles south of SouthPark Mall on Sharon Road. Use the entrance closest to the mall if you can. There is a second entrance but you'll have to weave around in order to find the parking lot to the left of the sanctuary building (left as you would be facing the building).

We meet in the Charles Little Activity Building (or CLAB), which is the brick building at the rear of the parking lot. As you come into the building you should see a sign for the meeting, then after you get inside - go into the first door on your right - the Parlor - where our group meets.

And if you need further directions or have questions, you can call me at 704-563-0657.  Remember no perfumes so as not to make those with MCS ill and "please" no smoking anywhere on the church grounds.

NOTE: We are always looking for new volunteers so if you are interested in helping in your area of interest or expertise, please see any of the members as listed at the bottom of this newsletter.

********************************************************************************************************************* 

I apologize for the few articles I gathered up for this newsletter. But circumstances prevented me. I'll have more news in a future newsletter.

 

All About M.E. (myalgic encephalomyelitis) or as defined in the US, Chronic Fatigue Syndrome

http://meresources.blogspot.com/2012/02/youtube-channel-getwellfromme.html

 

Fibromyalgia Newsletter from the NFA

In the Face of Pain

 

In the Face of Pain is
designed to empower

healthcare professionals, people with pain, caregivers, and other concerned individuals to advocate for better pain care. Additionally, the site helps pain management advocates learn to effectively share their experiences with others

to help raise awareness

of important pain

management issues.

 

To read the rest, go to:

http://campaign.r20.constantcontact.com/render?llr=d7zjvlfab&v=001RSBzIEyymuiLD06mCPVCgMsBK3opK0QjZifJhaovZoL1wnOZnS8CpZBlwByRqIS84Ivcm5LJwLBi3of4DEJ5PlH2W2tMELq1CJkELpgAFdEuSzK_cuXBXbXMzgv-yF_0McI93y_Slf5OSpAHB-EViU5pHlHDUH78sLZbM0Ki8O0I29emGJytMXLWpIHxb0kdSM40awQOQ1qAyvF85MLjm1P7HgYSfc2d6MLDOXlqmOfDZnUIi2ZNtm_IwOO-t_XuA06fYEfL09rfrZSg8KEBIg%3D%3D

 

More "In the Face of Pain" Info:

http://www.inthefaceofpain.com/be-an-advocate/?utm_source=Partners%2B&utm_medium=Link&utm_campaign=NFA%2BAware%2BEblast

 

 

From Co-Cure April 10, 2013

Date:    Tue, 9 Apr 2013 21:17:41 -0500
From:    Tate Mitchell <tatemitchell@gmail.com>
Subject: RES:
Therapeutic potential of cidofovir (HPMPC, VISTIDE) for the treatment of HHV-6 and/or CMV infections in severely ill patients diagnosed with (CFS/ME)

http://hhv-6foundation.org/research/international-conference
https://www.dropbox.com/s/9sl3v6g8kvplyvp/2013%20HHV-6%20Program%20Book.pdf


8th International Conference on HHV-6 & 7 on April 8-10, 2013 in Paris, France

Treatments
Therapeutic potential of cidofovir (HPMPC, VISTIDE) for the treatment
of HHV-6 and/or CMV infections in severely ill patients diagnosed with
chronic fatigue syndrome/myalgic encephalomyelitis

Gunnar Gottschalk1, Isabel Barao2, Daniel Peterson1
1Sierra Internal Medicine, Incline Village, NV, USA
2University of Nevada, Reno, NV, USA

Objective: Herpesvirus infections and natural killer (NK) cell
dysfunction may be important in the pathogenesis of Chronic Fatigue
Syndrome/Myalgic Encephalomyelitis (CFS/ME) in a subset of patients.
Cidofovir has broadspectrum activity against many DNA viruses
including the Beta-herpesviruses human herpesvirus 6 (HHV-6) and human
cytomegalovirus (HCMV). In this study, we proposed: 1) to determine
the effect of cidofovir treatment on physical and cognitive
functioning and NK cell function in CFS/ME patients with laboratory
results suggestive of HHV-6 and HCMV infections; and 2) to evaluate
the tolerability and safety of Cidofovir treatment.

Methods: From January 2005 to December 2012, we prospectively
evaluated 65 severely ill CFS/ME patients who underwent Cidofovir
treatment (intravenous; 5mg/Kg, every other week) in our clinic.
Patients were tested for exercise tolerance (time on treadmill and
oxygen consumption – VO2 Max) and signs of possible herpesvirus
infection in blood via polymerase chain reaction (PCR) and antigenemia
assays, before and after treatment. NK cell function was determined by
a NK cell lytic unit (LU30) assay. The tolerability of Cidofovir was
assessed by standard blood chemistry tests.

Results: 46/65 (70%) patients had a partial or full response to
treatment. Of this group 27/46 (56%) presented with a full response to
treatment and were able to return to work and/or daily activities.
Increases in VO2 and in NK cell function were observed. There were
6/65 (9%) patients who stopped taking the drug due to adverse events,
5/65 (8%) patients who were “lost to follow up,” and 8/65 individuals
(12%) who were non-responders to the drug. In general, Cidofovir was
well tolerated.

Conclusions: An expanded study is indicated to confirm these initial
results and explore new combination therapies for the treatment of
this subset of patients diagnosed with CFS/ME.

 

Our Support Group Leader and Board Members:

-  Kebbie Cannon is our Support Group Leader at kebbie1@windstream.net or Asst. Support Group Leader, Maggie Reed at Maggie_Reed@comporium.net

- Medical Advisor Dr. Charles Lapp, Hunter Hopkins Clinic in Charlotte. You can visit Dr. Lapp's Web Sites at www.drlapp.com where there is ample info about his clinic and making an appointment if you need.

- Treatment - Another site, which is primarily directed toward helping your doctors treat these disorders, is: http://www.cfstreatment.info/

- Treasurer is Leslie Vann at llvann@usa.net

- Newsletter Editor is Nancy Henson at nmhenson@aol.com

- Publicity Chairman is Howard Honeycutt at honeycutt2194@carolina.rr.com

- Visit our web site at www.CharlotteCFS.org