Charlotte CFS/ME/FM Support Group Newsletter

for June 18, 2012

 

 Happy Summer Everyone,

This month's meeting, Thursday, June 21st, at 7:00 PM, with George Piemonte , the Action Advocate, will discuss disability issues & answer your questions. His web site is:  http://www.lawyer.com/george-piemonte.html .  

 Since our speaker will be focusing on disability and how to obtain benefits and many other issues arising from that process, here is a link to some information you may find helpful or at least interesting given your current status:

Disability and Chronic Fatigue Syndrome

http://www.cdc.gov/cfs/news/features/disability.html

Centers for Disease Control and Prevention

http://www.cdc.gov/cfs/

***********For Fibro***********

Social Security Disability and Fibromyalgia

http://www.allsup.com/about-ssdi/ssdi-guidelines-by-disability/fibromyalgia.aspx

or

 How to get Social Security Disability or SSI for fibromyalgia.

www.ultimatedisabilityguide.com/fibromyalgia_disability.html

 If you look on Google, for example, there are many confusing web sites for SS & Fibro , so this will be my first question to Mr. Piemonte!  Where is the best info?

**************** 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.

 Note:  Summer Luncheons are held at 1:30 on the same day of the month but not at 7:00 PM.  See below for more info.

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

And if you need further directions, you can call me at 704-563-0657.

 

 

Upcoming Meetings/Luncheons (Subject to Change)

 ·  NOTE:  During the summer we have daytime luncheons instead of night-time meetings. 

 ·  July 19, 1:30PM -- Luncheon at Panera's Pineville -- 7510 Pineville Matthews Road, Charlotte, NC 28226; Phone: 704-540-0309, near Dr. Lapp's office. It is across the street (Rt. 51) from the Carmel Commons shopping center where the Fresh Market is.  It is also very close to Dr. Lapp's office.

If you are coming from Matthews on Hwy 51 - you pass the intersection where Dr. Lapp's office is and keep going - Panera Bread is at the end of that little strip shopping center.   Just past it on the right, you turn for parking after you pass Panera bread on the right. Be sure to look for the blue and purple balloons to find other members of the group.

August 16, 1:30PM-- Luncheon at Panera's, Matthews -- 1904 Matthews  Township Parkway, Matthews, NC 28105; Phone:  704-846-4003.  This is located in parking area of the strip mall where Target is located across from another mall (forget the name).  This is not too far from and near the hospital and very near the intersection of Independence (Rt. 74) and Matthews Township Parkway (Rt 51). Be sure to look for the blue and purple balloons to find other members of the group.

·  September 20 - Charles W. Lapp, M.D. - Our very own medical director will be here to share with us. We'll be back at our usual meeting place at 7PM.

Also, Its that time again when we need to have another board meeting to discuss our fall schedule.  Anyone interested in becoming more involved with the support group, please consider coming to the next board meeting We'll announce the date once its confirmed.  We can always use help with bringing refreshments, getting to the meeting early to open up if necessary, suggesting/arranging for a special speaker, and so forth.

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

Subject: Announcing "Ask the Doctor" at CFIDS/FM Self-Help
From Co-Cure
Date:    Tue, 5 Jun 2012 07:26:49 -0700
From:    Bruce Campbell bruce.campbell@flash.net


We are pleased to announce another new feature on our CFIDS/FM Self-Help website: “Ask the Doctor,” a joint project with Dr. Charles Lapp, well known CFS/FM physician and the director of the Hunter-Hopkins Center in Charlotte.

Ask the Doctor provides an opportunity to get questions about Chronic Fatigue Syndrome and Fibromyalgia answered by an authority on the two conditions. Dr. Lapp has treated CFS and FM patients for over 25 years. The clinic he directs is one of the few medical practices in the United States to specialize in CFS and FM.

For more info and some of Dr. Lapp’s recent posts, see

http://www.cfidsselfhelp.org/ask-doctor

Bruce Campbell, Ph.D., Executive Director
CFIDS & Fibromyalgia Self-Help Program

 

May 2012 E-News from Fibromyalgia Network

I highly recommend subscribing to Fibromyalgia Network if you can. Their news is excellent and some of it overlaps with ME/CFS.  Many with primary fibro also have ME/CFS and are not aware reason being that doctors just don't know about the reality of ME/CFS.

http://www.fmnetnews.com/pages/enews/e-alert-5-12.html

For anyone who think they may also have ME/CFS as well as Fibromyalgia, here's a link to the new ME/CFS Guide for Physicians that might be helpful: 

http://www.fmnetnews.com/pages/enews/e-alert-5-12.html

 

Medication Changes to Consider During the Summer

Chronic pain usually feels less intense, less debilitating when winter releases its cold grip.  You might be able to do more with less pain now. And you might also want to consider making some medication changes now that you are feeling better.

To read the rest of this article and many others, go to:

http://www.healthcentral.com/utils/newsweb/chronic-pain/news-sp.html

 Simple Remedies to Common Medication Side Effects

 From HealthCentral Newsletter by Christina Lasich, 4/30/12

http://www.healthcentral.com/chronic-pain/c/23153/152461/medication/?ic=6042

 

Risky Business

A paper titled “CFS and subsequent risk of cancer among elderly US adults” was published online on May 30, 2012 in the journal Cancer. (1) The authors of the paper, Cindy M. Chang, Joan L. Warren and Eric A. Engels, are from the division of cancer epidemiology and genetics at the National Cancer Institute (NCI), part of the National Institutes of Health in Rockville, Maryland. These investigators state that they conducted this important study because of the parallels they saw between CFS and cancer. That is, both are associated with immune abnormalities and infection. Over the past 20 years, other studies have hinted at a possible link between CFS and cancer. However, these studies involved relatively few patients and their findings were inconsistent. In contrast, for this study the NCI team linked nearly 1.2 million records from the NCI’s Surveillance, Epidemiology and End Results (SEER) registry with 100,000 Medicare records.

To read the entire article, go to:

http://www.research1st.com/2012/06/03/risky-business/

Similar Article from Health Central by Karen Lee Richards, Health Guide, Tuesday, June 5, 2012

Chronic Fatigue Syndrome Linked to Certain Types of Cancer

By Karen Lee Richards, Health Guide Tuesday, June 05, 2012

 

A new study, published online last week by the journal Cancer, found that patients with ME/CFS (myalgic encephalomyelitis aka chronic fatigue syndrome) have an increased risk of developing certain types of cancer later in life – most notably non-Hodgkin lymphoma.

Study Design and Results

Because ME/CFS is thought to be associated with immune abnormalities or infection and cancer can arise from similar conditions, associations between the two were examined in a population-based case-control study among the elderly in the U.S.  To continue:

http://www.healthcentral.com/chronic-pain/c/5949/153550/syndrome

 

Cognitive Dysfunction Finding in Fibromyalgia aka FibroFog

By Adrienne Dellwo, About.com Guide, May 30, 2012

http://chronicfatigue.about.com/b/2012/05/30/cognitive-dysfunction-finding-in-fibromyalgia.htm?nl=1

 

"In Praise of Small Steps" Lisa's Latest Entry,  June 4, 2012, from her "Living with CFS and Fibromyalgia" Blog

Note from Nancy:  The following is an excerpt from Lisa's article that was meaningful to me.  And if you go on to read the whole article, be sure to listen to the song at the end. I suspect its by a family member such as her sister. 

"... You don’t need to fix everything in your life right now. You don’t even need to fix one thing. You just need to do one little, miniscule, almost nothing thing.”

To read the article:

 http://livingwithcfs.com/in-praise-of-small-steps/?utm_source=Living+With+CFS+%26+Fibromyalgia+Newsletter&utm_campaign=ceaa65df58-May_11th_Update_Catalyst_for_Hope5_11_2012&utm_medium=email

 

ProHealth ME/CFS & Fibromyalgia E-Newsletter June 6, 2012

There are topics of every imaginable issue - far too many to try to list.  Take a look and browse thru it to see what might be of interest to you.

http://www.prohealth.com/em/EM060612C/index.cfm?slvor=10862.1065822.0.1.0.86766&eid=nmhenson@aol.com

 

Finding Your Way to Some CFS Cartoons

You may want to read the information found on that page when you go to the following link, but be sure to go all the way to the bottom where you'll find a list of links and you'll find the last link is to some cartoons.  The other links may lead you to some helpful information however.

http://sh1.webring.com/people/fc/cfsdays/index.htm

 

And Some Helpful Senior (or feeling like a Senior) Hints

For those of us who are not adept at texting but are looking into getting a gadget and maybe attempting to text to friends, etc., here's a list of senior texting abbreviations:

http://www.cartalk.com/content/texting-abbreviations-elderly

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

Our Support Group Leader and Board Members:

- Our Support Group Leader is Kebbie Cannon 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.  His other site, which is primarily director toward helping your doctors treat these disorders, is  http://www.cfstreatment.info/

 

- Our Treasurer is Leslie Vann at llvann@usa.net

 

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

 

- Visit our web site at www.CharlotteCFS.org