Charlotte CFS/ME/FM Support Group Newsletter

for February 3, 2014

 

In Condolence to the Family of Margaret Cannon,

We grieve along with Kebbie and her family for the passing of Margaret Cannon (mother of our support group leader Kebbie Cannon).  She passed Friday, January 17th and the service was held January 21 at Candlewyck Baptist Church.  You can send an online card or email to Kebbie at kebbie1@windstream.net .

For those who were not able to get to the service and are perhaps unable to get out much, you can go to www.gaskinservices.com to leave a note of condolence for the family.  There is a lovely picture of Margaret there.

 

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

 

Our meeting this month, February 20, 7PM will be a discussion lead by our newest board member-to-be Bethanie Massey.   She would like the meeting to lead off with these suggestions:

**What strategies we've employed or are trying that sometimes help/all the time help.

**Strategies/protocols we've heard about and have tried or would like to try.

Bethanie was a teacher for 6 years and also has a BS in Psychology - I feel both of these will be extremely helpful as she leads us in discussion and hopefully can help us learn new protocols and understand other issues.

 

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.

 

Upcoming Meetings

March 20 - Nancy Waring, PhD, A licensed psychologist at Carmel Baptist Counseling Center - Dr Waring has ME/CFS and Fibro and will speak on "Learning to Live with Chronic Illness."

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.

 

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

===================================================================

Fibromyalgia & Chronic Pain Support Group

Arthritis Services offers a support group that meets on the third Wednesday of each month at the Moorehead St. office. This interactive group is for persons who suffer from fibromyalgia or other forms of chronic pain. The group is led by a Master Physical Therapist and features guest speakers as well.

Arthritis Services Char-Meck 
500 East Morehead St., Suite 320, Charlotte NC 
1:00 p.m. to 3:00 p.m.

Please call 704-331-4878 to pre-register for this group.

Private Counseling

Counseling can be helpful in dealing with the ups and downs related to chronic disease. A certified counselor can meet with you by appointment.
Small fee. Scholarship available upon a limited and need only basis.

NOTE:  They cover more than Fibro pain and since there's chronic pain from CFS as well as Fibro, I think we could learn from the experts this group brings in to speak.  Or perhaps we should ask a specific pain specialist to speak to our group.

 

ME/CFS Alerts onYouTube

 

Some of you may be aware of ME/CFS Alerts on YouTube.  If not, just go to Youtube.com and search on ME/CFS Alerts.  I forget the number of the most recent but its up into the 20s.  The gentleman who does these is asking for financial help from those you are able to help.  You can hear him speak at:

 

http://www.gofundme.com/5yhjdo

  

 

Living with Fibromyalgia: What Helps Me

From ProHealth.com's Fibromyalgia e-Newsletter

Reprinted with the kind permission of CFIDS & Fibromyalgia Self-Help.

Editor's Note: Kathy Gamble, a fibromyalgia patient from Florida and graduate of the CFIDS/Fibromyalgia Self-Help course, works full-time as a nurse.

When I was diagnosed with fibromyalgia, it felt like the last straw in my world coming apart. My divorce had been final the month before, and the year had already been filled with other emotional traumas. While I was grateful that the diagnosis explained the aches and the fatigue I had experienced for several months, having a chronic illness felt like one more loss.

My doctor reviewed with me a short list of options for treatment of fibromyalgia that included medications as well as other treatments such as heat, massage and stretching. He also advised staying as active as possible and suggested something I found amusing: "Eliminate unnecessary stress in your life."

I was taking only over-the-counter pain medications and did not want to start more medications yet. I preferred to see how I could manage on my own first. I was still working full-time as a nurse and I rarely missed work due to my symptoms. Most days I did okay, so I thought I would just continue on as I always had. I functioned at 75 on the CFS & Fibromyalgia Rating Scale.

To read on:

http://www.prohealth.com/fibromyalgia/library/showArticle.cfm?libid=18589&B1=EM011514F&utm_source=EM011514F&utm_medium=em&utm_campaign=FM&slvor=11525.1139873.0.1.0.86766&eid=nmhenson@aol.com


 

 

From Co-Cure

 

Date:    Thu, 23 Jan 2014 07:50:56 -0800
From:    Bruce Campbell <bruce.campbell@flash.net>
Subject: Leadership Change at CFIDS & Fibromyalgia Self-Help

The CFIDS & Fibromyalgia Self-Help Program is pleased to announce the appointment of Kathy Gamble to succeed Bruce Campbell as Executive Director, effective July 1, 2014. Kathy, who has fibromyalgia, has participated in the program since 2001 and the program’s the senior course leader. She works in nursing administration at an academic medical center in Florida.

Jan Wolski, an occupational therapist, will continue as Associate Director, a position she has held since the organization began in 1998.

A 501(c)(3) non-profit organization, the program has conducted more than 400 self-help classes since its founding. The program's main website ( www.cfidsselfhelp.org )

contains information about its self-management courses, plus hundreds of articles on coping strategies, pacing, stress management, support and other topics. In addition, there are many patient success stories and information for family and friends.

Together with Dr. Charles Lapp, it also manages a second website: “Treating CFS and Fibromyalgia: An Integrated Approach” ¯ (www.treatcfsfm.org ) .  The site is a free self-study course, with step by step instructions for creating an individualized treatment plan.

Bruce Campbell, PhD
Executive Director
CFIDS & Fibromyalgia Self-Help Program

 

 

 

From ProHealth Researched Energy Supplement Big Hit with FM and ME/CFS Community 

By Karen Lee Richards* 

Do you ever feel like a car that has run out of gas? If so, it may be time to add some NADH to your cellular tank. NADH is the fuel our cells need to produce energy and function properly. NADH, a reduced form of nicotinamide adenine dinucleotide, is a naturally occurring coenzyme formed from Niacin (vitamin B3) that plays an essential role in the energy production of every human cell - all 100 trillion of them.  To read the entire article, go to:

http://www.prohealth.com/ep/EP012414/index.cfm?slvor=11545.1140919.0.1.0.86766&eid=nmhenson@aol.com

 

Another Article from ProHealth, this is very interesting.:

 

ProHealth’s 2013 Advocate of the Year – Jennifer Brea

By Erica Verrillo • www.ProHealth.com • January 25, 2014

 

ProHealth is proud to announce Jennifer Brea as its 2013 “Advocate of the Year.” The Advocate of the Year award goes to an individual who has made outstanding contributions to the betterment of the ME/CFS community. ProHealth’s 2012 Advocate of the Year award went to long-time patient advocates Bob and Courtney Miller.
 

Jennifer Brea contracted ME in 2011, when she was suddenly hit with a flu-like illness. A little over a year later, she became bedridden - just a few months before her wedding - when she developed complex migraines and POTS, and began having difficulty reading, writing, and speaking (aphasia). Suspecting her symptoms were neurological, she made an appointment with a neurologist, who told her she had “conversion disorder.” (Formerly known as “hysteria.”)

 

To continue reading this article:

http://www.prohealth.com/ME-CFS/library/showArticle.cfm?libid=18613&B1=EM012914C&utm_source=EM012914C&utm_medium=em&utm_campaign=MECFS&slvor=11552.1141499.0.1.0.86766&eid=nmhenson@aol.com

 

 


SolveCFS BioBank: Breaking Down Barriers Through Biomarker Discovery, Part 3 of 4  From SolveCFS.org (Previously CFIDS.org) Newsletter of 2-2-2014

Posted: 01 Feb 2014 09:29 AM PST

In the short time our SolveCFS BioBank has been in operation, it has proven to be an attractive resource drawing some of the best and brightest investigators into ME/CFS research.  In this 3rd part of our SolveCFS BioBank series we feature two investigators who are working on biomarker discovery.

Biomarkers (short for biological markers) are measurable characteristics that reflect the severity or presence of some disease states. More generally a biomarker is anything that can be used as an indicator of a particular disease state. To read this article in its entirety and use links to Parts 1 and 2, go to:

http://solvecfs.org/solvecfs-biobank-breaking-down-barriers-through-biomarker-discovery-part-3-of-4/

 

====================================================================

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

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

- 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.

- http://www.cfidsselfhelp.org/ - 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 (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

- 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