Charlotte CFS/ME/FM Support Group Newsletter
for October 2, 2010
Hi everyone,
Our meeting with Dr. Lapp at our September meeting was fantastic. I've already sent the handout that he presented to all of us so that you have an outline of the subjects he talked about. There was some problem with opening the file and I re-sent the file modified so that most people with Word could open it now.
Our Next Meeting is October 16th with Nancy Waring, Ph.D.; Licensed Psychologist at Carmel Counseling Center facilitating a meeting on the topic of "Caregivers." More information about place and time, etc. will be in the meeting reminder that will be mailed out around October 11th.
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Hunter-Hopkins Center in Charlotte NC is embarking on a research study of an
investigational medication in adolescents with fibromyalgia.
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From Recent ProHealth Newsletter Regarding the Upcoming CFSAC Meeting
http://www.prohealth.com/me-cfs/library/showarticle.cfm?libid=15639
Next Webinar Sponsored by the CFIDS Assoc.
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Expanding Research: Building On Your Investment |
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Tuesday, October 5, 2010 1:00 PM - 2:15 PM EDT https://www1.gotomeeting.com/register/558875312
Moderator: Suzanne Vernon, PhD Scientific Director The CFIDS Association of America
Gordon Broderick, PhD; Kathleen Light, PhD and Alan Light, PhD; Dikoma Shungu, PhD
...
Cornell University's Dr. Dikoma Shungu extended his initial Association funding into an additional grant to expand his research into brain lactate levels. ...
Join us for a fascinating update of these research studies and to learn more about how research begets research, making the investment of dollars in it one of the most important ones people with CFS and those who care can make.
For more information about the above, check the CFIDS.org web site's archive for the October 1st CFIDSLink Newsletter. Subscribe to this newsletter so that you don't miss any of the CFIDSLink Newsletter's Information.
Also in the October 1 issue of CFIDSLink Newsletter, the recording and slides for the most recent webinar were posted. This webinar was on CFS & The Viral Connection. Dr. Anthony Komaroff of Harvard Medical School and Brigham and Women's Hospital explored some of the infectious agents and illnesses connected to CFS, including Epstein-Barr Virus (EBV), Human Herpesvirus (HHV)-6, Q-fever, Ross River virus, Lyme Disease, Parvovirus, Borna disease virus, Influenza A (H1N1) virus (swine flu), retroviruses, enteroviruses and mycoplasmas. You can find links to all the past webinar programs at http://www.cfids.org/webinar/series2010-past.asp. |
Next CFSAC Meeting Agenda for October 12, 2010
http://www.hhs.gov/advcomcfs/meetings/agendas/cfsac20101012_agenda.html
August E-Newsletter from Fibromyalgia Network
http://www.fmnetnews.com/pages/enews/AugustAlert2010.html
Thursday September 16, 2010; Via Adrienne Dellwo, About.com
International XMRV Conference News
The first International Workshop on XMRV earlier this month appears to be consistent with the history of chronic fatigue syndrome (ME/CFS) -- lots of arguing, inconsistency and uncertainty. At least, that's my assessment, based on the wonderful reporting of Mindy Kitei at CFS Central, who attended the Bathesda, MD conference. To read more:http://chronicfatigue.about.com/b/2010/09/16/xmrv-in-chronic-fatigue-syndrome-prostate-cancer-the-blood-supply.htm?nl=1
To read the Entire ME/CFS/FM Newsletter from Adrienne Dellwo of About.com:
http://specials.about.com/service/newsletters/chronicfatigue/1284750000.htm
XMRV Positive Survey
What do people with XMRV (and related human gamma retroviruses) have in common?http://xmrvpositivesurvey.blogspot.com/
From Co-Cure
MED, RES: XMRV, Solving CFS and Advances in FM: The OFFER Conference
Date: Tue, 28 Sep 2010 17:13:00 -0700
From: cort johnson <phoenixcfs@YAHOO.COM>
The Offer Conference just took one day in Salt Lake City but it was a packed
day. Dr. Singh talked about XMRV, Dr. Vernon took on 'Solving CFS' in 3-5 years
instead of 20 (!) and Dr. Wood had a fascinating talk on Fibromyalgia. Check it
out below in the Report from the OFFER conference on Phoenix Rising.
http://www.forums.aboutmecfs.org/content.php?235-Report-From-the-OFFER-2010-
Conference
Science day agenda for
October 12, 2010 CFSAC meeting
From: kelly <kellylatta66@GMAIL.COM>
The CFSAC site
has posted a draft of presentations to be given at the next meeting on Oct. 12,
Oct. 13, and Oct. 14. October 12 is the "unofficial" science day. Presentations
on EBV, Immunology, XMRV, Genomics, Anti-Virals, and Other Biological and
Non-Biological Measures of Change are scheduled for that day.
The full agenda can be found at:
http://www.hhs.gov/advcomcfs/meetings/agendas/cfsac20101012_agenda.html
From Co-Cure 9-22-2010
The Awful Disease Washington Forgot
Date: Tue, 21 Sep 2010 17:13:31 -0500
From: kelly <kellylatta66@GMAIL.COM>
By Llewellyn King; Published September 21, 2010 =96 11:32 am
In the end, as with so much else, the fight against disease leads to Washington.
There are big diseases with big lobbies, like AIDS, Alzheimers, cancer, diabetes
and heart. Their millions of sufferers have associations and lobbies to push for
federal research money and to shape its expenditure. Most have their celebrity
backers, like Elizabeth Taylor for AIDS, Jerry Lewis for muscular dystrophy, and
Mary Tyler Moore for diabetes.
To read more:
http://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind1009c&L=co-cure&T=0&F=&S=&P=6465
If we always do what we’ve always done, we will get what we’ve always gotten
By John Herd; September 28, 2010
The CFS Advisory Committee (CFSAC) is impotent.
For the better part of two decades I’ve consistently voiced this sentiment and will do so again.
People have said we must attend the meetings and submit our testimonies, if for no other reason than to show we are watching and that we care. I too have attended such meetings and submitted testimonies; it is an exercise in futility.
To read the article in its entirety, go to: http://johnherd.wordpress.com/
New Feature Articles at CFIDS/FM Self-Help
Date: Wed, 29 Sep 2010 07:47:20 -0700
From: Bruce Campbell <bruce.campbell@FLASH.NET>
The CFIDS & Fibromyalgia Self-Help Program has two new feature articles on its
website (
www.cfidsselfhelp.org ):
A Free Down Load for Word File Compatibility
Following is the link for downloading the update which allows Word 2003 to open Word 2007 AND 2010 documents. Just click on "Download" to get it started. I didn't have to use it so I'm not sure if its a quick download or not.
My son provided this for us so that whenever someone receives a Word file, they no long have to deal with not being able to open the file if there is some incompatibility.
From HEALTH CENTRAL - Pain Connection - September 14, 2010
According to a new study in the journal Addiction, people who are most vulnerable to painkiller addiction share four primary risk factors. To read more: http://www.healthcentral.com/chronic-pain/news-536327-98.html?ic=6009
by Annette Whittemore ; Molecular Interventions
(This is a very interesting article with more detail in one place about the process of the establishment of this Institute whose physical location was just recently opened. It is lengthy, so you may want to print it for reading.)
http://molinterv.aspetjournals.org/content/10/3/120.long#boxed-text-1
ProHealth Wellness Newsletter 9-22-2010
http://www.prohealth.com/eg/EG092210C/index.cfm?slvor=10476.1015972.0.1.0.86766&eid=nmhenson@aol.com
Note from Nancy: I've fallen behind in these newsletters myself but to keep up-to-date, subscribe at www.prohealth.com .
CFIDSLink E-News - September 24, 2010
1st International XMRV Workshop Report
XMRV has
been discussed at numerous scientific sessions since its discovery in 2006, but
the 1st International XMRV Workshop was the first scientific conference
dedicated solely to presentations about the family of gammaretroviruses that
includes XMRV and polytropic murine leukemia viruses (MLVs) associated with
prostate cancer and chronic fatigue syndrome (CFS).
To read moe that was presented at this meeting:
http://www.cfids.org/archives/2006-2010-cfidslink/september-2010.asp
Q&A at XMRV Conference
http://videocast.nih.gov/Summary.asp?File=16098
D-ficient? Health Risks You Need to Know About; By Karen Lee Richards*
http://www.prohealth.com/ep/EP092410/index.cfm?slvor=10479.1016290.0.1.0.86766&eid=nmhenson@aol.com
Note from Nancy: My husband and I both are deficient in D and Dr. Lapp recently put me on a heavy short-term regimen to try to boost my levels.
Helping Others
You can go to the following link to receive a daily reminder to CLICK and help many other such as the Humane Societies, Breast Cancer, Feeding Children and others.
Nancy Henson, Editor