Charlotte CFS/ME/FM Support Group Newsletter

for February 17, 2008

In this Issue:

-Charlotte Committee Meeting 2/28
-Meeting Notices for 2/19 and 2/21
-Whittemore Institute
-More on Signing the Petition for Changing the Name
-Articles on Pain, How Pain Can Damage the Brain, and Is Fibro a Disease of the Brain?
-And...much, much more
 
Volunteers Needed - Again, we need volunteers to help as greeters, making copies, setting up the information table, or whatever you see that needs being done and you think you can help. Please talk with Kebbie or Dr. Lapp if you wish to commit to volunteering with the group.
 
Committee Meeting Feb. 28 - The committee that administrates the group will be meeting on February 28th to discuss issues of importance. If you are interested in committing to help in some way, talk with Kebbie or Dr. Lapp about attending that meeting. 
 
 
Charlotte Area ME/CFS/FM Support Group Meeting
This month's meeting will have Joe Parisi, who was to have been with us last month but we had to cancel due to bad weather, discussing stress management and Frances D'Amato discussing and demonstrating Tai Chi.  We are meeting, Thursday, February 21st, 7:00 - 9:00PM, Sharon Presbyterian Church, 5201 Sharon Rd. Use the north parking lot (closest to the mall) and the meeting will be held in a brick building at the rear of that lot.  It is called the Charles Little Activity Building, or CLAB. Follow the signs.
 
Note: Always remember to bring a cushion if you are very sensitive in the lower region (:o) as I am. There are a few soft chairs and a couch you can sit on (if we are in the parlor - sometimes we have to move to a different room. Always feel free to get up and walk around if you need to. The door to the right of where the speaker stands will take you to restrooms and drinking fountain. Take advantage of refreshments also as an opportunity to stretch your legs.
 
Membership:  Membership to this support group is free but when asked, we suggest a $12 "donation" per year to cover the cost of materials. But we understand that some folks are financially "challenged."
 
Upcoming Meetings (subject to change)
March 20 - Dr. Jeffrey Ewert - Managing Cognition
April 17 - Overlapping Symptoms
May 15 - Picnic at Strawberry Acres
June 19 - Caregivers
July 17 - Lunch (this is a new idea - let us know what you think)
August - No meeting
September - November - Dr. Lapp will begin series of talks based on Bruce Campbell's book "The CFIDS and Fibromyalgia Self-Help Book."  This series will run through November.
December 20 - Christmas Party
January 16, 2009 - Planning Meeting
 
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HopeKeepers of Charlotte This weekly faith-based group meets Tuesdays at 7:00 PM. The next meeting is, Tuesday, February 19th, 7:00 - 8:30 PM, at Pineville Church of the Nazarene, Room 310. Parking is at the front of the building facing Hwy 51. For more information Contact Renae Savage at 704-341-0959 or hopekeepers@carolina.rr.com
 
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Gastonia CFIDS/Fibromyalgia Support Group Meeting - February 21, 1:15, the topic will be Tai Chi.  If you have questions contact Victoria Bonner at vbonner2@lycos.com.
 
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Whittemore  Institute For CFS, FM, GWS, etc. - How to Make Donations
Note from Nancy:  I would just like to ask, why is there not more attention to this wonderful new institute? Why are there not fund raisers by large companies, others with deep pockets to create similar Institutes around the country? http://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind0802b&L=co-cure&T=0&P=277
 
 
To Sign Petition to Change the Name
http://www.afairname.org/petition.cfm
 
 
Latest Prohealth (ImmuneSupport.com) E-Newsletter - A lot of great articles
http://prohealth.com/eg/EG021308/index.cfm
 
 
Chronic Pain Can Harm the Brain
http://www.medscape.com/viewarticle/569851_print
Helpful Hint:  Medscape requires the use of a userid and password. Its easy to register. I use the same userid and password for all these types of registrations so I don't have a problem remembering. But I still have a rolodex on my desk just in case the ol' brain goes blank.
 
 
Subject: RES: Fibromyalgia: A Disorder of the Brain?
Date:    Fri, 15 Feb 2008 12:10:31 -0500
From:    "Bernice A. Melsky" <bernice.melsky1@verizon.net>
Neuroscientist. 2008 Feb 12 [Epub ahead of print]; Schweinhardt P, Sauro KM, Bushnell MC.; Center for Research on Pain, McGill University.  PMID: 18270311

This article presents evidence that fibromyalgia patients have alterations in CNS anatomy, physiology, and chemistry that potentially contribute to the symptoms experienced by these patients. There is substantial psychophysical evidence that fibromyalgia patients perceive pain and other noxious stimuli differently than
healthy individuals and that normal pain modulatory systems, such as diffuse noxious inhibitory control mechanisms, are compromised in fibromyalgia. Furthermore, functional brain imaging studies revealing
enhanced pain-related activations corroborate the patients' reports of increased pain.

Neurotransmitter studies show that fibromyalgia patients have abnormalities in dopaminergic, opioidergic, and serotoninergic systems. Finally, studies of brain anatomy show structural differences between the brains of fibromyalgia patients and healthy individuals. The cerebral alterations offer a compelling explanation for the multiple symptoms of fibromyalgia, including widespread pain and affective disturbances.

The frequent comorbidity of fibromyalgia with stress-related disorders, such as chronic fatigue, posttraumatic stress disorder, irritable bowel syndrome, and depression, as well as the similarity of many CNS abnormalities, suggests at least a partial common substrate for these disorders. Despite the numerous cerebral alterations, fibromyalgia might not be a primary disorder of the brain but may be a consequence of early life stress or prolonged or severe stress, affecting brain modulatory circuitry of pain and emotions in genetically susceptible individuals.

 
  Heath Ledgers Death by Adrienne Dellwo, CFS/FMS Forum Guide at About.com
http://chronicfatigue.about.com/b/2008/02/06/health-ledgers-death-caused-by-pain-killers-sleep-meds.htm
 
 
 
FDA MedWatch - Antiepileptic Drugs - FDA Analysis Showed Patients Receiving Antiepileptic Drugs Had Approximately Twice The Risk of Suicidal Behavior Or Ideation - Warning includes Neurontin and Lyrica.  Note from Nancy:  Its always wise to consult your pharmacist whenever a new medication is added to your regimen. Pharmacists tend to know the latest about bad combinations and side effects. I know that from experience.
http://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind0801e&L=co-cure&T=0&P=3130
 
 
Here's the link to Dr Lapp's Chat on Proheath in case you missed it in the last newsletter:  http://www.immunesupport.com/library/showarticle.cfm?id=8666&T=CFIDS_FM&B2=EM020608F
 

March 7 Live Chat Q&A with Cort Johnson
Mark your calendar for our next Live Chat Event on Friday, March 7, with Cort Johnson a patient with multiple chemical sensitivities who has put his scientific knowledge to work on behalf of others. Cort offers understandable reports on the latest research as founder of the Phoenix Rising newsletter and website (Bringing Opportunity to ME/CFS/FM Patients"). See Cort Johnson: Making ME/CFS Research Readable and Accessible.  The Cort Johnson chat time is Friday, March 7 from 3 to 4 pm Pacific Time (PST) and 6-7 EST, but for the time where you live, see the World Clock.
New to Immunesupport (ProHealth) Chat?  If you arent already a registered chat user, you may register now http://www.immunesupport.com/chat/chat_beta.cfm. Use the scroll-down bar on the right of the chat screen to see all 12 chat rooms and to locate the Cort Johnson Chat Room on March 7.)
 
 A critical moment in time for the Fibromyalgia patient and the NFA
Recent Media Spotlight Marks Unprecedented Coverage of Organization and Fibromyalgia - ANAHEIM,
California ---- The recent surge in media coverage of fibromyalgia coincides with an unprecedented convergence of scientific advances in public awareness of the disorder, according to Lynne Matallana, president and founder of the National Fibromyalgia Association. To read more:
http://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind0802a&L=co-cure&T=0&P=5055
 
Subject: RES: Fibromyalgia: A Disorder of the Brain?
Date:    Fri, 15 Feb 2008 12:10:31 -0500
From:    "Bernice A. Melsky" <bernice.melsky1@verizon.net>
Neuroscientist. 2008 Feb 12 [Epub ahead of print]; Schweinhardt P, Sauro KM, Bushnell MC.; Center for Research on Pain, McGill University.  PMID: 18270311

This article presents evidence that fibromyalgia patients have alterations in CNS anatomy, physiology, and chemistry that potentially contribute to the symptoms experienced by these patients. There is substantial psychophysical evidence that fibromyalgia patients perceive pain and other noxious stimuli differently than
healthy individuals and that normal pain modulatory systems, such as diffuse noxious inhibitory control mechanisms, are compromised in fibromyalgia. Furthermore, functional brain imaging studies revealing
enhanced pain-related activations corroborate the patients' reports of increased pain.

Neurotransmitter studies show that fibromyalgia patients have abnormalities in dopaminergic, opioidergic, and serotoninergic systems. Finally, studies of brain anatomy show structural differences between the brains of fibromyalgia patients and healthy individuals. The cerebral alterations offer a compelling explanation for the multiple symptoms of fibromyalgia, including widespread pain and affective disturbances.

The frequent comorbidity of fibromyalgia with stress-related disorders, such as chronic fatigue, posttraumatic stress disorder, irritable bowel syndrome, and depression, as well as the similarity of many CNS abnormalities, suggests at least a partial common substrate for these disorders. Despite the numerous cerebral alterations, fibromyalgia might not be a primary disorder of the brain but may be a consequence of early life stress or prolonged or severe stress, affecting brain modulatory circuitry of pain and emotions in genetically susceptible individuals.
 
 
Diminished Cardiopulmonary Capacity During Post-Exertional Malaise
Journal: of Chronic Fatigue Syndrome, Vol. 14, No. 2, 2007, pp. 77-85
Authors: J. Mark VanNess PhD, Christopher R. Snell PhD, Staci R. Stevens
http://www.cfids-cab.org/rc/VanNess.pdf
 
 
Epstein Barr - After Cher's story on going to German for EBV treatment, there is an extremely interesting article for anyone wanting to know more about Epstein Barr, mono and then making comparisons with ME/CFS. http://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind0802b&L=co-cure&T=0&P=1006
 
 
Fibromyalgia E-Newsletter from ImmuneSupport.com (ProHealth)
http://www.immunesupport.com/em/EM020608F/index.cfm
 
 
 FDA - 2008 Safety Alerts for Drugs, Biologics, Medical Devices, and Dietary Supplements   http://www.fda.gov/medwatch/safety/2008/safety08.htm#Chattem
 
 
ME & CFS References - Factsheet 2008
 
http://freespace.virgin.net/david.axford/melist.htm
 
 
Register for the Pat Gurnick, Lifestyle Counsellor Chat - for patients with ME/CFS, FM and MCS, Wednesday, Feb. 20th, 8PM EST at Delphi Forums: http://forums.delphiforums.com/fmsupport/start
 
 Spiritual Corner
There will be a Billy Graham TV Special the week of March 1 - 9. Check this link for times and channels when this special will air:  http://www.billygraham.org/TV_Index.asp .  And pray for the Franklin Graham Festivals being held all over the world this year including one in Knoxville, TN April 25-27 and Charleston, SC September 19-21.
 
Take Your Vitamins
http://www.alighthouse.com/prayervitamins.htm
 
 
Nancy Henson
ME/CFS
Campaign for a Fair Name
Patient Vote May 2008
http://www.afairname.org

Charlotte Area ME/CFS/FMS, Charlotte, NC