Charlotte CFS/ME/FM Support Group Newsletter

for February 3, 2013

 

Happy February,

 

And the little furry guy says we'll have an early spring - lets hope so.   Anyway, our meeting this month on February 21st will be for a time of sharing and open discussion. We hope we'll get some ideas for future speakers, etc. as our Board Meeting had to be cancelled due to icy weather.  Watch for the meeting reminder that will come to you a few days before the Feb 21 meeting.  Please come to share your ideas, ask questions, or just listen to discussion.

 

Following are a few articles that may be of interest:

 

These are sometimes overwhelming so just scan thru the whole thing once, checking out the titles, then go back to the beginning after you've decided which ones you are interested in reading.

 

 

ME/CFS Advocate Begins Hunger Strike For Ampligen Approval

By Cort Johnson on January 31, 2013

Bob Miller has been to the Vice President’s office, he’s had one and one meetings with the Director of the NIH, he’s canvassed politicians on the Hill – he’s thrown everything he can into the fight to get this disorder recognition – but this time, the issue – the probable FDA rejection of Ampligen – is too personal, too fraught with ugly implications that he is taking advocacy to a next, very personal level; Bob Miller – longtime ME/CFS patient is going on a hunger strike to emphasize the need for Ampligen approval.

To read the rest of this article:

 

http://www.cortjohnson.org/blog/2013/01/31/chronic-fatigue-syndrome-patient-goes-on-hunger-strike-ampligen-approval/

 

 

Check out hunger strike on Facebook:

 

https://www.facebook.com/HungerStrikeForAmpligen?fref=ts=

 

 

Date: Fri, 1 Feb 2013 18:04:28 -0500
From: White House Chronicle <
whchronicle@GMAIL.COM>
Subject: Re: Llewellyn King TV Commentary on Robert Miller

Dear Co-Cure Listserv Coordinator,

I wanted to let you know that Llewellyn King, who hosts the mecfsalert
YouTube Channel, has commented on CFS sufferer Robert Miller's hunger
strike on his weekly PBS television program, "White House Chronicle." Mr.
King opens the program with his commentary on Mr. Miller.

This "White House Chronicle" episode will air beginning this weekend on PBS
stations in Washington --Sunday, Feb. 3 at 9 a.m. on WETA, Channel 26;
Sunday at 11:30 a.m. and 6:30 p.m. on WHUT, Channel 32. It will air
throughout the week on some 200 PBS and public, educational and
governmental cable TV stations and worldwide on Voice of America Television.

An audio version of the episode will air Saturday, Feb. 2 at 9:30 a.m.,
3:30 p.m. and 9:30 p.m. on Sirius XM Radio's POTUS (Politics of the United
States) Channel 124.

The episode will be posted on the "White House Chronicle" Web site,
whchronicle.com, on Monday, Feb. 4.

Thank you for your attention to this.

Best,

Linda Gasparello
Co-host and General Manager
White House Chronicle TV

 

 

Action Alert: FDA Opens Discussion on Chronic Opioid Therapy

The FDA has announced a public hearing and has requested comments on the subject of the use of opioid drugs in the treatment of chronic pain. The public hearing will be held on February 7 and 8, 2013 from 9 a.m. to 4 p.m. in Bethesda, Maryland. There will be a live Web cast of the hearing. Information on how to view the live Web cast will be located at: http://www.fda.gov/Drugs/NewsEvents/ucm326450.htm. In addition to the public hearing, the FDA is requesting electronic or written comments on the subject. Comments will be accepted until April 8, 2013. This is our chance to have our voices heard by the people who are making the decisions! Some of the issues they will be considering include: Should ...

You can read the rest of this SharePost by Karen Lee Richards by visiting:
http://www.healthcentral.com/chronic-pain/c/5949/158891/discussion

 

MSG May Make Fibromyalgia Symptoms Worse

A study published in the November-December 2012 issue of Clinical and Experimental Rheumatology found that monosodium glutamate (MSG) contributed to worsening symptoms in some fibromyalgia patients. MSG is a flavor enhancer used in many of the packaged and processed foods we eat. It is the sodium salt of glutamic acid, which is in a class of chemicals known as excitotoxins.

High levels of excitotoxins have been shown in animal studies to cause damage to certain areas of the brain. Scientists disagree as to just how dangerous excitotoxins are to humans. Some feel that humans are not as susceptible to excitotoxins as rodents, therefore we should not be concerned about using them as a food additive. Other scientists believe th...

You can read the rest of this SharePost by Karen Lee Richards by visiting:
http://www.healthcentral.com/chronic-pain/c/5949/158889/fibromyalgia

 

 

The CFS Knowledge Center is a Font of Information

 

As it is with most site, you will need to register to read articles. It is well worth registering for.  The following article on Dr. De Meirleir lecture is one example:

 

Partial summary of Dr. Kenneth De Meirleir WPI lecture

 

Dr. Kenneth De Meirleir recently spoke at the WPI. Below is a portion of the WPI summary of his lecture from the Wings of Hope blogspot:

 

This review is not meant to be a summary of the underlying science but rather a summary of the practical application of this work. A recording of this talk will be placed on the WPI website: www.wpinstitute.org, as soon as possible.

 

To read the entire article, go to:

 

http://cfsknowledgecenter.ning.com/page/inthenews-5

 

 

 

See our Dr. Lapp on the CDC MedScape Web Site

 

http://www.medscape.org/viewarticle/759095

 

 

From Co-Cure

Date: Mon, 14 Jan 2013 09:54:39 -0500
From: Cort Johnson <
phoenixcfs@GMAIL.COM>
Subject: RES, MED: 2013: The Year Ahead in ME/CFS

We’re stuck in the doldrums as the federal level with little funding and little support but that doesn’t mean stagnation. With several major studies wrapping up 2013 will be a very important year for this disorder.  We're going to learn a lot about what kinds of pathogens are present or not present, about new treatment options, about subsets and more. Check it out in The Year Ahead in Chronic Fatigue Syndrome here:

http://www.cortjohnson.org/blog/2013/01/13/the-year-ahead-in-chronic-fatigue-syndrome-mecfs/

 

 

Coping with ME/CFS & FM Pain: The Chinese Menu - Co-Cure Digest

To: nmhenson@aol.com
Sent: 1/31/2013 2:40:35 A.M. Eastern Standard Time

Note from Nancy: I read parts of this and scanned thru the rest and I highly recommend this to anyone who is newly diagnosed and looking for answers. Its also good for those of us who have been deal with pain for many years as a refresher.

 

This article is from ProHealth.com and written by Bruce Campbell, PhD, April 4, 2012

Dr. Bruce Campbell directs the educational CFIDS and Fibromyalgia Self-Help website (www.cfidsselfhelp.com), and online self-help group discussion courses. These focus on sharing practical ways to cope with the daily challenges of life with ME/CFS/FM.

This article is part of
a series on coping with the four major symptoms of CFS and fibromyalgia. Two cardinal rules are to use multiple strategies and experiment. As patients continue to find, the coping bonus is that pain, poor sleep, fatigue, and cognitive problems share so many causes that finding relief for one can have a multiplied effect.



Strategies for Pain

Pain is usually the central symptom in fibromyalgia and is often a problem for CFS patients as well.

For people with FM, pain is generally felt all over the body, though it can start in one region and spread or move from one area to another. It may be accompanied by neurological problems such as tingling and burning or numbness in the hands, arms, feet, legs or face.

For people with CFS, pain may be experienced in the joints or, more commonly, as an overall body pain ("I feel like I've been run over by a truck.")

To read the rest of this article, go to:

http://www.prohealth.com/ME-CFS/library/showArticle.cfm?libid=16905&B1=EM013013C&utm_source=EM013013C&utm_medium=em&utm_campaign=MECFS&slvor=11039.1087745.0.1.0.86766&eid=nmhenson@aol.com

 

 

 

Destress your day a little bit with this:

 

http://www.vitality101.com/fun/Fun-stress-free-day-2013-01-31

 

 

Our Support Group Leader and Board Members:

-  Kebbie Cannon is our Support Group Leader 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. 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

- Visit our web site at www.CharlotteCFS.org

 

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