Charlotte CFS/ME/FM Support Group Newsletter

for August 2,  2010

 

Hi All,

 

NOTE:  Please try to get a subscription to the Co-cure articles from which I get much of my info for the newsletters.  There may be articles of importance to you that I either missed or intentionally did not include. Just go to www.co-cure.org, look to the top of the page on the LEFT side and you'll see "free subscription" - click on that.

 

Then you have many options. Unfortunately, you'll have to read all the info to decide for yourself what you what to sign up for. They do explain the default subscription should you do nothing but include your email address, etc. If you are not happy with what you receive, there are email addresses you can email to for extra help. They understand that some of us have cognitive issues - some more than others. Everyone at co-cure is a volunteer and is also sick so are very helpful.

 

I choose the digest as I don't wish to receive every article separately. I get my digest of co-cure articles each morning and have the day  to go thru it.

 

 

 

The August luncheon will be:

 

Thursday, August 19th; 1:30PM, at Panera Bread, 7510 Pineville Matthews Rd. Charlotte.  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.

 

Correction to previous Panera location infoPanera's is not in the same shopping center with the Fresh Market. It is across 51 from the shopping center with the Fresh Market.  

 

 

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.

 

 

Upcoming Meetings:

 

September 16 - Speaker - Dr. Lapp; Topic:  "What's New" & Q&A

 

October 21 -      Caregivers - Hope and help for those caring for ME/CFS/FM or other disabled patients.  This is meant as a family event. Your family can be a spouse, any family member, or a good friend.

 

November 18 - Nutritionist Susan Chandler, Chiropractor, an expert on nutrition and familiar and sympathetic to CFS/FM patients and their special dietary needs.

 

December 16th - Christmas Party

 

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Who's In and Who's Out at the International XMRV Workshop? 

by Cort Johnson; Published on July 23rd, 2010 02:58 PM

 

International XMRV Workshop Lineup - Conference and Workshop lineups can tell you a lot about who's in and who's out. To read on:   http://www.forums.aboutmecfs.org/content.php?4

 

 

Mission: dispelling the myths and providing the facts about CFS and fibromyalgia

http://cfs-facts.blogspot.com/

 

Beginners Guide to XMRV - Facebook

http://www.facebook.com/l/72d59DH8vzGdnd76g3JeSVgJk6g;http://www.facebook.com/l/e6c9b3CEMbfih4Ho5KAY2Dqth2w;sofaandthecity.blogspot.com/2010/07/beginners-guide-to-xmrv.html

ProHealth E-Newsletter (Formerly ImmuneSupport) July 28, 2010

http://www.prohealth.com/eg/EG072810B/index.cfm?slvor=10411.1012002.0.1.0.86766&eid=nmhenson@aol.com

Topics Include:

- New Drug May Turn Off Chronic Pain

- News on Natural Depression Aids

- Proof IBS Symptoms are Real

 

News from ProHealth - "Maybe Its Fibro" Webinar August 12th, 2010

http://www.prohealth.com/me-cfs/blog/boardDetail.cfm?id=1399376


Cold cereal might beat a hot breakfast

Last Updated: 2010-07-01 14:04:36 -0400 (Reuters Health), by Rachael Myers Lowe

NEW YORK (Reuters Health) - You needn't feel guilty if you don't cook hot breakfasts for your kids. In a recent large study of children that compared breakfast-skippers, cereal eaters, and kids who had "other" breakfasts, the cereal-eaters came out on top for healthiest diets. For more:

   http://www.reutershealth.com/archive/2010/07/01/eline/links/20100701elin005.html

 

 

 

From Dr. Lapp:

 

Dear Friend of Hunter-Hopkins,

Hunter-Hopkins Center is evaluating an experimental medication for the treatment of Orthostatic Hypotension (low blood pressure) and Neurally Mediated Hypotension (fainting) in persons with Chronic Fatigue Syndrome.

Persons with CFS and either very low blood pressure or fainting may be candidates for this study and
should contact Wendy Fallick, Research Coordinator, at 704 543 9692.

Details of the study can be found at the Clinical Trials website:
http://clinicaltrials.gov/ct2/show/NCT00977171?term=droxidopa&rank=6

 

 

Medicare Watch Report Examines Efforts to Increase Enrollment in Low-Income Programs

 http://www.medicarerights.org/issues-actions/medicare-watch.php

 

 

CURRENTS - Pain Management News and Research - July 2010

http://www.aapainmanage.org/pain_management_news/NEW_newsletter/email/currents0710.html

 

 

 

Hunter-Hopkins Center in Charlotte NC is embarking on a research study of
an investigational medication in adolescents with fibromyalgia
.

We need your help.  

If your adolescent (age 12-16) has fibromyalgia and is interested, please contact the research coordinator, Wendy, at 704 543 9692.
 
For more information you can go to the Clinical Trials website:     
 
http://clinicaltrials.gov/ct2/show/NCT01020474?term=01020474&rank=1

 

 

HEALTH CENTRAL:  The Pain Connection

July 20, 2010

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

 

 

 

US Department of Veterans Affairs - GWS Update: New Research

 http://www1.va.gov/opa/pressrel/pressrelease.cfm?id=3D1925

 

 

UK Scientists Find Promising New Treatment for CRPS - by Karen Lee Richards

In a small but important study, scientists at the University of Liverpool discovered that treating the immune system of patients with Complex Regional Pain Syndrome (formerly called Reflex Sympathetic Dystrophy) can lead to a significant reduction in pain.  The study, published in the February 2010 issue of the journal Annals of Internal Medicine, found that a single, low dose infusion of intravenous immunoglobulin (IVIG) significantly reduced pain in just under 50 percent of patients treated, with few adverse effects.  To read more: http://www.healthcentral.com/chronic-pain/c/5949/116019/uk-scientists/?ic=6042

 

About.com CFS/FM E-Newsletter from Adrienne Delwo

http://specials.about.com/service/newsletters/chronicfatigue/1279911600.htm

 

Adrienne reports on many important issues for us. One very important article in this issue is regarding getting payment for your treatment.

http://chronicfatigue.about.com/b/2010/07/21/paying-for-treatment-with-fibromyalgia-chronic-fatigue-syndrome.htm?nl=1

 

 

 

Don't Miss Opportunity For the Latest Surveys 

ME-CFSCommunity.com

Join the ME-CFS Community at: 

http://cfsknowledgecenter.ning.com/

 

Then you can particpate in surveys such as those mentioned below and take advantage of all the latest information.

A message to all members of ME-CFSCommunity.com

Two items of particular interest have been added to the ME-CFSCommunity.
  • A new ME/CFS & FM Patient Survey is now online on the Main page. It joins the Case Definition Survey the results of which go to the CFS research team at the University of Miami under the direction of Dr. Nancy Klimas.

If you have not yet taken both surveys, you are encouraged to do so at your earliest convenience to help advance research into this terrible affliction which has so dramatically affected all of our lives.

  • After much discussion and planning, we are pleased to announce that the UK Group has been opened for membership. The group has been developed to facilitate direct communication between those from the United Kingdom no matter where in the world they may currently live.

Kieran Hall, of Surrey, spearheaded development of the group and has laid the foundation for lively interaction between its members. More than a few interesting and exciting innovations are in the works as membership grows.


Lastly, let me thank each of you for your continuing interest and participation in the ME-CFSCommunity as well as the ME-CFSKnowledgeCenter. I am pleased to inform you that in the last 30 days alone, we had over 14,500 unique visitors from 54 countries.

We still have much to do to reach the millions afflicted with ME/CFS, let alone change the attitudes and opinions of the public and our governmental agencies, but we are gathering strength and together we can, and will, change the world we live in.

Dan Moricoli

Visit ME-CFSCommunity.com at: http://cfsknowledgecenter.ning.com/?xg_source=msg_mes_network


 Inspiration Corner 

 

 3-Minute Film on How a Young Man Inspired an entire Store

http://www.stservicemovie.com/miami?cm_mmc=MIAMI-_-NL-_-06.22.2010-_-STSRmov

 

 

Nancy Henson, Editor