Charlotte CFS/ME/FM Support Group Newsletter

for September 5, 2012


Happy Autumn!

Our September meeting will have our very own Dr. Lapp as speaker. As always he'll  review what's new in the world of ME (CFS) and Fibromyalgia in research and treatment and there will be time for questions.  He is director of the Hunter Hopkins Center and focuses on the diagnosis and treatment of ME/CFS and Fibromyalgia.

As a reminder, Dr. Lapp's web site is where his "Stepwise Approach" has been turned into a wonderful new aid for us and it can be printed.

Also he has a site with Bruce Campbell for the CFIDS Self Help Information at .


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

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

Fall 2012 Schedule

Sept 20 - Charles W. Lapp, MD, Hunter Hopkins Center

Oct 18 - TBA

Nov 15 - Dr. Bridges, Family Practitioner (Pine Lake Practice)

Dec 20 - Annual Christmas Party


Current Newsletter from Cort Johnson

If you subscribe to Cort Johnson's newsletters, then you can skip this.  But if you don't, I encourage you to skim thru the synopses of articles in the following link.  There's much going on and if you can and are interested in reading some of it, Cort provides it for you:


Thanking President Obama


Fibromyalgia E-News for August 2012


Pain Management Newsletter - August 2012


White House Responds to ME/CFS Advocate


ProHealth E-Newsletter


ProHealth News:  Why Can’t Medical Science Figure Out Chronic Fatigue Syndrome? Toni Bernhard, J.D.

It’s been a little over a year since I wrote a piece that garnered a lot of attention: “The Stigma of Chronic Fatigue Syndrome.” Since that time, little has changed for me regarding my own illness. I’ve had two more encounters with doctors like the one I shared in the earlier piece. In both instances, upon seeing the diagnosis “Chronic Fatigue Syndrome” on my chart, they changed their attitude toward me - and not in a good way. To read the article:




Chronic Pain Connection

Obama Keeps Promise to Look into Chronic Fatigue Syndrome Funding, by Karen Lee Richards

In March, I shared a video with you in which Courtney Miller, wife of ME/CFS patient Bob Miller, stood up at at Town Hall meeting in Reno, Nevada a year earlier and asked President Obama to help her family by asking the National Institutes of Health (NIH) to increase funding for chronic fatigue syndrome.   At the time, the President said, “...what I promise I will do when I get back is I will have the National Institute of Health explain to me what they’re currently doing and start seeing if they can do more on this particular ailment.” For the past 17 months, ME/CFS advocates have waged an ongoing e-mail campaign asking for a report on the result of his promise. Now we finally have that report in the form of  letter from President Obama to Courtney Miller.  To continue reading this article:

To see other articles by Karen, go to the following link and you'll see the most recent topics to the right.


Dr. Peterson Talks! On Ampligen, Autoimmunity, Pathogens and His New Partnership


FDA Issues Alert on Pain Supplement Reumofan Plus

The FDA has issued a second warning to consumers about the potential health risks of two products marketed as natural dietary supplements for the treatment of various chronic pain disorders. The products––Reumofan Plus and Reumofan Plus Premium––contain several potentially harmful active pharmaceutical ingredients that are not listed on the product labels.   The FDA has received multiple reports of adverse events associated with the use of Reumofan Plus, including stroke and even death. Other reports include liver injury, sudden worsening of glucose (sugar) control, weight gain, swelling, leg cramps and adrenal suppression (problems with kidney functioning).

To read more about this article and the rest of the information in the Pain Connection newsletter go to:

If you find these articles useful, consider subscribing to these newsletters.


The Revolutionary "Good Fat" That Promotes Heart, Brain, Bone and Joint Health  By Karen Lee Richards*

Note from Nancy:  Folks, this is excellent information you should save.  I've printed it out for easier reading and to save for future use.


 Signs and Symptoms of ME (myalgic encephalomyilitis or erroneously named CFS)

Note;  In this article be sure to note that when the symptoms are listed they are referred to  the people with "severe" ME.  The other 75% have lesser symptoms. Do keep that in mind.


Symptoms and signs of ME, all of which are exacerbated by stress, include the following at this link :



From HealthCentral:  Scientists Developing New Class of Drug for Chronic Pain

By Karen Lee Richards, Health Guide Tuesday, August 28, 2012

Scientists at the University of Liverpool and the Royal Liverpool University Hospital have been awarded £1.4 million––equivalent to approximately $2.2 million––to design a new type of drug for the treatment of chronic pain.

Chronic pain affects about 116 million Americans and more than eight million UK citizens, not to mention millions of others around the world. Unfortunately, many medications currently used to treat chronic pain are only effective for about 40% of patients. So there is no doubt that the need for a novel new class of drug for pain relief is huge.  To continue reading article:



Our Support Group Leader and Board Members:

- Our Support Group Leader is Kebbie Cannon at or Asst. Support Group Leader, Maggie Reed at

- Medical Advisor Dr. Charles Lapp, Hunter Hopkins Clinic in Charlotte. You can visit Dr. Lapp's Web Sites at where there is ample info about his clinic and making an appointment if you need.  Another site, which is primarily directed toward helping your doctors treat these disorders, is:

Also, there is the site primarily directed toward helping your primary care doctors or any other doctors who need to know this information that treat you on a regular basis.  It is

- Treasurer is Leslie Vann at

- Newsletter Editor is Nancy Henson at

- Visit our web site at