Charlotte CFS/ME/FM Support Group Newsletter

for September 2, 2013

 

 

Hi everyone,

 

HAPPY LABOR DAY

 

This month's speaker September 15th, 7-9PM is one of our favorite speakers, Dr. Charles Lapp.  He's working on a special topic to discuss with us that sounds very interesting.  Come prepared with questions for the Q&A time that we always enjoy.

 

DirectionsAs 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 will be meeting.

 

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

 

 

Upcoming Meetings/Luncheons:

 

October 17 - TBA

November 21 - Chrys Kub, Physical Therapist/Yoga Instructor

December 19 - Annual Christmas Party

 

January - Planning Meeting of the Board Members- And, if you think  you might like to volunteer and help with our group, please come to this meeting. We always need help.  Therefore, there will be NO REGULAR MEETING in January.

 

NOTE:  Dr. Nancy Waring was scheduled for October but due to health issues (she has CFS & Fibro also), she's rescheduled for spring.

 

 

Articles in this Newsletter

Illness and Housekeeping (from CFIDSFM Self Help)

ADVOCATE VOICE - Monthly FM Newsletter for August 2013

A National Cclinical Trials Network for ME/CFS

The Simmaron ME/CFS Physicians roundtable Part 2

2 Therapists - A CFS Chronicle #11 from Cort Johnson's Blog*

The Fibromyalgia Diet

The Interplay Between FM and SSA, and others

Study Found Nearly Half of FM Patients Have Nerve Damage

Gaining Traction Through Distraction

 

* Please note that I include many articles from Cort Johnson's Blog. If you like his articles be sure to go to his blogsite and sign up to receive notices of his articles and newsletters.  I just don't have the energy or time to review them or include them.

 

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Illness and Housekeeping

 

Anyone who knows me realizes I've gone thru a REALLY, REALLY rough patch in my life.  I am overwhelmed most of the time. When I'm not feeling overwhelmed, its because I'm either asleep, totally engrossed in a movie or TV program, or I'm not home.  Because of some other articles I sorted thru, I stumbled upon this one and think its really perfect for me.  Perhaps someone out there will also find it helpful.  It is by the way, from Bruce Campbell's book/web site and from which Dr. Lapp presented many presentations to our support group a few years ago.

 

http://www.cfidsselfhelp.org/library/illness-and-housekeeping

 

 

National FM and Chronic Pain Assoc - ADVOCATE VOICE - Monthly Newsletter for August 2013

 

http://www.benchmarkemail.com/c/v?e=343910&c=2508E&l=1C204E0&email=pIBEwpaS5hMLPHWc2pYS%2FjciHg%2FVbFy1&relid=4C4A98BD

 

 

 

From Cort Johnson's Health Rising Blog

A National Clinical Trials Network For ME/CFS

If there's anything the chronic fatigue syndrome community could use right now is a break with clinical trials. Read on at:

http://www.cortjohnson.org/blog/2013/08/18/building-a-national-clinical-trials-network-chronic-fatigue-syndrome/

 

 

The Simmaron ME/CFS Physicians Roundtable Pt. II: Talking Treatments 

 

Round-Table

Simmaron Research likes to get people talking. At the FDA Workshop earlier this year, they booked a room, invited patients and physicians and then held a physicians round-table with some of the field’s top doctors.

Part II of a three-part series focuses on Dr. Peterson of Sierra Internal Medicine /Simmaron Research Institute, Dr. Klimas  - the director of the Center for Neuroimmune Studies at Nova Southeastern University, and Dr. Enlander, the Director of the

 Mt. Sinai ME/CFS Research Center talking about chronic fatigue syndrome treatment.

Dr. Peterson – Simmaron Research Institute

Dr. Peterson started off the treatment section with some hopeful news. Powerful new immune drugs such as immune modulators and cytokine blockers), he said, that have been and are being developed, can have dramatic effects in the right patients.

(Rituximab is an example of a new approach that paid off. The first of its class of drugs (monoclonal antibodies), Rituximab (Rituxan) opened up a new arena of drug development. Similarly, Ampligen and other Toll-like receptor affecting drugs offer new approaches to immune modulation. Drug repurposing efforts that are finding new uses for old drugs present some intriguing possibilities. An abortifacent, mifepristone, for instance, boosts natural killer cell functioning.

Breakthroughs in other fields are providing other opportunities. Studies documenting the role natural killer (NK) cells and the innate immune system play in preventing cancer have piqued drug developers interest enough the  several NK cell boosting drugs are in development.   See more at:

http://simmaronresearch.com/2013/07/mecfs-physicians-roundtable-ii-talking-treatments/#sthash.U2o9kP3A.dpuf

 

Another Anectodal Account of One Woman's Journey from CFS to FM to POTS to Success

http://www.cortjohnson.org/blog/2013/08/20/from-chronic-fatigue-syndrome-to-fibromyalgia-to-pots-to-success-one-womans-journey-through-the-medical-profession/

 

Two Therapists: ‘A Chronic Fatigue Syndrome Chronicle” #11 From Cort Johnson's Blog

By Carol Lefelt on August 24, 2013

 

I have been lucky to locate compassionate, smart therapists who, unlike many of my medical doctors, are good listeners without complicating preconceptions that get in the way of real help. I’ve read that Cognitive Behavior Therapy is most successful with ME/CFS patients, but I’ve found that personality and a willingness to be eclectic matters more than strict professional orientation or ideology.  To continue:

 

http://www.cortjohnson.org/blog/2013/08/24/two-therapists-a-chronic-fatigue-syndrome-chronicle-11/

 

 

 


The Fibromyalgia Diet: HELP! I Don't Know What to Eat!

 

From the Fibromyalgia HealthWatch Newsletter, August 28, 2013

One of the most frequently asked questions about fibromyalgia is whether there is a diet that would help. A certified holistic health care practitioner answers that question with tips on which foods are best and which foods may cause problems for people with fibromyalgia. To read more of this article and others such as:

 
 

The Interplay Between Fibromyalgia and Social Security Disability, and others:

 

http://www.prohealth.com/em/EM082813F/index.cfm?slvor=11240.1110471.0.1.0.86766&eid=nmhenson@aol.com

 

 

Study Found Nearly Half of Fibromyalgia Patients Had Nerve Damage by Karen Lee Richards, August 28, 2013

A study from the journal Pain, published in June 2013, reports that almost half of the small group of fibromyalgia patients they tested were found to have damage to nerve fibers in their skin and other evidence of a disease called small-fiber polyneuropathy (SFPN).   Small-fiber polyneuropathy is a type of peripheral neuropathy (nerve pain) that occurs from damage to the small unmyelinated peripheral nerve fibers.

Although it is characterized by severe pain attacks that typically begin in the hands and/or feet, some people initially experience a more generalized, whole-body pain. The pain has been described as stabbing, shooting or burning. SFPN can also result in hyperalgesia (increased sensitivity to pain) or allodynia   (experiencing pain from stimulation that is not normally painful).

Additionally, patients may have abnormal skin sensations such as tingling or itchiness. For some, the pain is more severe during times of rest or at night. If you want to read more about this study, go to the following link:

http://www.healthcentral.com/chronic-pain/c/5949/162682/fibromyalgia-patients

 

Gaining Traction (Through Distraction): A Chronic Fatigue Syndrome Chronicle #12

 

 

How do you handle a disorder doctors can't explain, mostly don't know anything about, and few can treat very well? Recognizing that mulling on those rather stark facts could be a recipe for disaster, Carol began to cultivate distractions - things that would allow her to gain traction outside of the world of ME/CFS.

In this blog she looks at the distractions in her life, both positive and negative, that have gotten her outside of ME/CFS, at least for awhile.

http://www.cortjohnson.org/blog/2013/08/31/gaining-traction-through-distraction-a-chronic-fatigue-syndrome-chronicle-12/

 

Our Support Group Leader and Board Members:

-  Kebbie Cannon is our Support Group Leader (704) 843-1193 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