Charlotte CFS/ME/FM Support Group Newsletter

for JMarch 17, 2014

 

Happy St. Patricks Day!

Our meeting this month, this week Thursday, March 20, 7:00-8:30(9:00) will feature Nancy Waring, Ph.D, a licensed psychologist, speaking on "Learning to Live With Chronic Illness."  Dr. Waring has been with us many times and has been practicing in this area for 20 years.  She currently works for Carmel Counseling Center and has a general adult practice.  One of her specialties is working with those with chronic illness and she also has ME/CFS and Fibromyalgia.

She plans to speak, offering her comments, and afterwards there will be time for questions and comments. People often want to ask a question during the presentation but if you can, please write down your questions and if possible wait until the end to ask questions. 

Please note that we try to start wrapping up around 8:30-9:45 as another group uses the same room for a meeting at 9PM.  The room needs to be vacated by 9:00  prompt.

 

Directions:  As always, our meetings are at 7:00 PM at Sharon Presbyterian Church ( 7-9 PM), located 0.8 miles south of SouthPark Mall at 5201 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.  We have a new meeting room - Classroom 6.  When you come into the building, go past the door to the Parlor where we used to meet and walk into the gym and immediately turn left. You come to a door marked "6" where we meet.

Remember no perfumes so as not to make those with MCS ill and no smoking anywhere on the church grounds.

 

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Upcoming Meetings

 

April 17 - Dr. Charles Lapp - Sharing some of the proceedings of a recent ME/CFS Conference as well as taking questions on any ME/CFS or Fibromyalgia topic.

May 15 - Gloria Smith -  Coordinator of the SolveCFS BioBank & Patient Registry.  More volunteers are needed for this project.  We will have Gloria speak to answer your questions. And, you can go to BioBank@CFIDS.org or call her at 704-362-2343!  Read the short article I've included below.

June 19 - TBA

July and August - No regular daytime meetings.  We meet in the afternoon for luncheons and Panera Bread.  More details about this in forthcoming newsletters.

 

Note:  Always check the latest newsletter - there are 2 per month - to be aware of any last minute changes.

 

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New Sign for a Stroke

https://www.evernote.com/shard/s283/sh/b49d0649-fe98-49a1-94de-8305402fcbd0/aee41700c06abf059d1883616f1abc77

 

 

 

A Thank you From the CFIDS Association

 

February 11, 2014 

Dear Ms. Vann & friends at the Charlotte Area Support Group,

I wanted to express our deep appreciation for your gift of $50.00 in memory of Margaret E. Canon. Your generosity is helping us lead innovative research initiatives and catalytic collaborations globally speeding the process of discovering safe and effective treatments for ME/CFS!

Through you participation and support of the cause, you are making a difference in the lives of millions! Recently, a poster on the wall reminded me of the difference one person can make. It stated simply:

     "I am only one...But I Am One. I can't do everything, but I can do something. And, with everything in me, I will do my something well!"

Many times we get overwhelmed with the enormity of the challenges ahead. We Begin to feel alone in the struggle and think that our resources aren't making much of a difference. I want you to know that you have made a difference!

Thanks to you...we are filling gaps in our understanding of ME/CFS through targeted research projects. Thanks to you...we are leveraging our research investments through proactive global collaboration resulting in an additional investment of tens of millions of dollars being spent to advance more and better treatment options. Thanks to you...we are creating an innovative, one-of-a-kind data platform to expand and extend our Research Institute Without Walls, making it the most unique and innovative ME/CFS research program in the world. Thanks to YOU!

Additionally, I want to extend an invitation to contact us if you have questions about the ME/CFS research landscape, our organizational initiatives, and/or progress toward our collective vision of a world without ME/CFS. Our small, dedicated staff will do our best to respond to your questions. Our email address is cfids@cfids.org

Thank you again for your generosity! Let us never underestimate the awesome Power of ONE!

Best regards,

Carol E. Head

President & CEO

The DFIDS Association of America

 

Levaquin Side Effects

 

I recently rejected using the drug levaquin for a UTI since I had read about possible side effects that included the possibility of it causing neuropathy.   Since I already have neuropathy, I asked my PCP if he could prescribe something else.  My doctor was very agreeable to prescribing something else. because he understands the idiosyncracies of having CFS.  He said he has never had a patient that acquired any side effects.  When I asked him if any of those patients also had CFS, he said no.  I just wanted you to be aware because I know how sensitive we "can be" to just about anything.

https://www.youtube.com/watch?v=S6JyAPd5PXY

 

 

Big Antiviral Trial Could Usher in New Treatment Era for Fibromyalgia

By Cort Johnson • www.ProHealth.com • March 8, 2014

Reprinted with the kind permission of Cort Johnson and Simmaron Research.

 

 

IOM Admits Lack of Expertise in GWI Report

Posted on by Jeannette Burmeister

Apparently, Kenneth Shine, former president of the Institute of Medicine (IOM) and chair of the IOM committee that was tasked by the VA with the development of a case definition for Gulf War Illness, had a gut feeling about the outcome of the study.  Shine stated last year that he “could not recall when the IOM was last charged with defining a disease.” Guess what:  The IOM hadn’t developed a case definition then and–even though the report was released today–it still hasn’t! Wait! What? Well, at the price tag of $850,000, the IOM was “unable to develop a new consensus definition of CMI given the lack of uniform symptoms, the variety of symptoms, and the long onset and duration,” according to the  report. That’s a big taxpayer “oops,” wouldn’t you say?

To continue reading, go to:  http://thoughtsaboutme.com/

 

EBV I: A Deficient Immune Response, Increased Levels of Epstein-Barr Virus Opens Up EBV Question in Chronic Fatigue Syndrome Again

Cort Johnson; March 10, 2014

 

A Long History

Although altered EBV-specific antibody titers have been repeatedly demonstrated in CFS, no clear evidence for chronic EBV replication has been obtained so far.

 

Perhaps the most common viral trigger for chronic fatigue syndrome (infectious mononucleosis, aka glandular fever) or Epstein Barr Virus (EBV) is a herpesvirus almost all adults have been exposed to and carry, usually in latent form in their cells.

 

EBV infection was proposed as the cause of chronic fatigue syndrome not long after the disorder became prominent in the 1980s, but inconsistent study results in the 1980s and 1990s followed by Straus’s 2000 paper (which suggested the search for herpesvirus infections in ME/CFS was over) put a damper on EBV research efforts.

- See more at:

http://simmaronresearch.com/2014/03/1591/#sthash.JCUkibXe.dpuf

 

 

An Interview with Andrea Whittemore-Goad by Cort Johnson

 

Andrea Whittemore-Goad  ”I have been given three new gifts this year.  The gift of time, the gift of letting go and a willingness in my soul to share my laughter and tears wherever my life may lead. I have had ups and downs, bumps and bruises, scrapes and deep wounds this year, yet I have survived it all“ AWG. Andrea Goad Whittemore came down with ME/CFS after surgery to remove her tonsils when she was ten years old.  Since then she’s had viral meningitis, Influenza A, and co-infections of hemophilus B, salmonella, babesia, cryptosporidium, and mycoplasma pneumonia, reactivated viral herpetic infections of HSV-1, EBV, hhv-6a, and hhv-7.

Read more: Persisting Without Exception: An Interview with Andrea Whittemore-Goad 
http://www.cortjohnson.org/blog/2014/03/16/persist-without-exception-interview-andrea-whittemore/

 

 

Research1st

 

FDA Releases New Draft Guidance for Industry “CFS/ME: Developing Drug Products for Treatment”

Posted: 13 Mar 2014 11:34 AM PDT

http://solvecfs.org/wp-content/uploads/2014/03/FDA.jpgOn March 11, 2014, FDA released a draft guidance for industry entitled “Chronic Fatigue Syndrome/Myalgic Encephalomyelitis: Developing Drug Products for Treatment.”  The purpose of this guidance is to assist sponsors in the development of drug products for the treatment of CFS/ME.

The guidance has been posted online and can be found:

 

http://www.fda.gov/downloads/Drugs/GuidanceComplianceRegulatoryInformation/Guidances/UCM388568.pdf

 



A New Approach to Fibromyalgia

Infections are a common trigger for fibromyalgia (FM), and fibromyalgia patients experience many ‘sickness behavior’ symptoms, but we haven’t usually associated FM with viruses or immune system problems.

 

To continue reading this article, go to:  http://www.prohealth.com/fibromyalgia/library/showArticle.cfm?libid=18809&B1=EM031114F&utm_source=EM031114F&utm_medium=em&utm_campaign=FM&slvor=11613.1147229.0.1.0.86766&eid=nmhenson@aol.com

 

 

Support Group Leader, Board Members, and Sources of Info for Doctors and Patients:

Kebbie Cannon - Support Group Leader (704) 843-1193 at kebbie1@windstream.net 

Treasurer -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

- Facilitator - Bethanie Massey at bethanieann@gmail.com

- Medical Advisor Dr. Charles Lapp, Hunter Hopkins Clinic in Charlotte. You can visit Dr. Lapp's Web Site at www.drlapp.com where there is ample info about his clinic and making an appointment if you need. It offers many links to other sources of information.

 

- Visit our web site at www.CharlotteCFS.org

- www.DrLapp.net - Going thru Dr. Lapp's site you'll find links to various sorts of help, one of the best self help sites on the Internet is Bruce Campbell's self-help site at www.cfidsselfhelp.org (Dr. Lapp was involved in this).

- Treatment - Another site, which is primarily directed toward helping your doctors treat these disorders but that info is quite beneficial for patients to be aware of, is: http://www.cfstreatment.info/

- Valuable Site for ME/CFS/FM Information by Cort Johnson http://www.cortjohnson.org/

- Long Time Source of Help for ME/CFS/FM and related disorders along with supplements with proceeds of sales going to help ME/CFS/FM  http://www.prohealth.com/index.cfm