Charlotte CFS/ME/FM Support Group Newsletter

for January 24, 2008

Hi Everyone,

 
I want to emphasize again how much we need volunteers to help with the Charlotte ME/CFS/FMS Support Group. We need greeters, people who are willing to get involved either in making copies, or managing the information table.  We'd also like to offer those people who are unable to receive emails, a short newsletter periodically so they at least know what meetings are coming up for the coming months.
 
We will be having a committee meeting on February 28th - anyone interested in becoming involved and volunteering with out group, please contact me or talk with Kebbie or I at the next support group meeting which will be February 21st.
 
Upcoming Meetings (subject to change)
February 21 (Possible rescheduling of Joe Parisi - or scheduling speaker on Tai Chi/Yoga/Rolfing - stay tuned)
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 - 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
 
 
The Hopekeepers of Charlotte is continuing to meet at the Pineville Church of the Nazarene every Tuesday at 7PM.  For the next 3 months we will be meeting in room 310. This is NOT in the Family Life Center.  It is in the building that faces Hwy 51, (Pineville-Matthews Rd).  The entrance is to the right as you face the building and is marked Church Office.  For more information, contact Renae Savage at hopekeepers@carolina.rr.com or 704-341-0959.
 
 
New York Times Article on Fibro
 
http://www.nytimes.com/2008/01/14/health/14pain.html?pagewanted=1&_r=2&ei=5087&em&en=bac45d5aff5a17d7&ex=1200459600
 
 
Below is Lynne Matallana's (President & Founder, National Fibromyalgia Association) comments:
 
http://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind0801c&L=co-cure&T=0&P=1358
 
 
 
Fibromyalgia Network Comments to NY Times Article on Fibromyalgia
http://www.fmnetnews.com/basics-news.php
 
 
National Fibromyalgia Association to Host Press Conference at National Press Club on January 24, 2008
http://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind0801c&L=co-cure&T=0&P=7181
 
 
 
January CFIDSLink E-Newsletter from the CFIDS Association
http://www.cfids.org/cfidslink/2008/010906.asp




Forest and Cypress Announce Submission of New Drug Application for Milnacipran for the Treatment of Fibromyalgia Syndrome

 

NEW YORK and SAN DIEGO, Dec. 31 /PRNewswire-FirstCall/ -- Forest Laboratories, Inc. (NYSE: FRX) and Cypress Bioscience, Inc. (Nasdaq: CYPB) a

http://www.frx.com/news/PressRelease.aspx?ID=1090283

 

Disability Story on CBS (The delay in getting benefits):

http://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind0801c&L=co-cure&T=0&P=2882

 
 
 
ProHealth Wellness Newsletter 
Take a look at their first newsletter.  These are the people who bring you all the good info on ImmuneSupport.com and they are looking for suggestions for topics for this new e-newsletter. They want to know what areas people need information on most. You'll notice ProHealth products advertised but you should know that a portion of the sales of those products go to help fund research for ME/CFS and Fibromyalgia. And they've been doing this for a very long time as the founder Rich Carson has ME/CFS/FM. The sales also support the efforts of ImmuneSupport.com. I include many links to their wonderful articles and information.
 
Rich and others are spearheading the effort to rename CFS to ME and to finally define a clinical definition for ME modeling it after the Canadian Clinical Case Definition that came out a few years ago. I refer to this a lot in my newsletters. I use some of their products as do many people. So take a look and if there's information you'd like them to provide, let them know.
 
 http://prohealth.com/eg/EG011608/index.cfm
 
This was the preceding announcement of this new e-newsletter:
http://www.immunesupport.com/em/EM010208C/index.cfm
 
 
Dr. Lapp on ImmuneSupport.com Chat February 1st - Mark your calendar for the next Live Chat Event on Friday, February 1, with Dr. Charles Lapp, MD - a CFS pioneer, researcher, and clinician. Dr. Lapp is director of the Hunter-Hopkins Center in Charlotte, North Carolina - one of a few medical offices in the United states that concentrates on the evaluation, management, and care of ME/CFS/FM patients.
 
 
Check out Abstracts on ImmuneSupport:  http://www.immunesupport.com/articles/pastabstracts.cfm
 
 
The Invest in ME Web site from the UK offers a very interesting E-Newsletter. To subscribe, go to:
www.investinme.org
 
 
National Healthcare
This is a big topic during an election year. Some physicians have answered many of the questions we have about this issue:
http://www.muhcc.org/index.php?id=28
 

Crisis Assistance Ministry

Assistance and Advocacy for People in Financial Crisis - Emergency Financial Assistanc

500-A Spratt Street
Charlotte, NC 28206
704-371-3001 (P)
 

How Crisis Assistance can help you

Rent:
If you have been evicted, padlocked or face possible eviction, we may be able to assist you. In order to receive help, you must be at least five days late with your rent and have received written notification from your landlord.

Our mortgage assistance is provided for people facing foreclosure through our Credit Counseling Partners. If you need help with paying your mortgage, please contact the Consumer Credit Counseling program at United Family Services.

Utilities: If your utilities are about to be, or have already been disconnected, we may be able to assist you with utility payments (electricity, gas, water or oil).

How you qualify for assistance
If you are experiencing an emergency situation with your housing and/or utilities and cannot pay your bills, Crisis Assistance Ministry may be able to help. There are many different ways that a person can qualify to receive assistance. 

We place no limit on the number of visits for emergency financial assistance. Each visit is carefully evaluated to determine our ability to assist.

A person may be turned away from the agency for lack of proper documentation or other reasons. If this happens to you, we will explain the reason so that you will know the best way to receive help in the future.

If you do not live in Mecklenburg County, please contact the Department of Social Services or your local United Way.

How to apply for help

As soon as you know you will be unable to pay your rent or utilities, you may come to Crisis Assistance Ministry for help. Our hours are Monday-Friday from 8 am-5 pm. An arrival time of 7:45 am is suggested. We take every effort to minimize waiting time. Because people are seen according to the nature of emergency they are experiencing, it is difficult to know how long you can expect to wait. 

Appointments are also available and can be made in-person from 10:30 am-4:00 pm. Appointment times include several evening options. Because appointment availability varies, it is helpful to come to the agency as soon as you know you face a financial emergency.

What to bring
1. Social security documentation (card, document from the Social Security Administration, W2 form, pay stub) for all in household; non-citizens do not need a social security card to be served

2. Picture ID for all adults in household

3. Proof of any and all household income for the past 30 days

4. All disconnection, past due or late notices

5. Unemployment information if applicable

Welcome to the end of the year 'Story Edition' of Phoenix Rising. The edition, which was delayed because of computer problems, was designed to give ME/CFS patients a chance to ponder the difficulties and opportunities that millions of people across the globe face as we enter the new year. The challenges facing the CFS community  are enormous.

 

These are three remarkably different stories; one involves a Canadian now almost completely disabled but still participating as fiercely as she can, a Nevadan who's story illustrates the emotional challenges ME/CFS can pose to an entire family, and a ME/CFS patient who emerged in complete health after from many years of suffering. Plus there's a blog from me about a possible breakthrough that will provide food for thought for some chronic fatigue syndrome (ME/CFS) patients.  

 

You can access these stories at the below URL's.

 

Linda's Story - Linda writes of the ups and downs of a 20 year journey with severe ME/CFS that began in college.  
 
http://phoenix-cfs.org/StoryMacdonald's.htm

 

DM's Story DM's family, with their diagnosis by a prominent physician and their well documented immune abnormalities, demonstrate how many different facets - emotional and physical - ME/ CFS can have.
 
http://phoenix-cfs.org/StoryDM.htm

 

Diana's Story Diana's story of recovery from a chlamydiae pneumoniae infection may be familiar to some. Here she provides a recent update of her startling return to health after many years of suffering.   
 
http://phoenix-cfs.org/StoryDiana's.htm
 
Corts Blog A new trigger for CFS? A trip to the dentist has a surprising results with possibly long term results.  
 
http://phoenix-cfs.org/BlogGoldCrown.htm

 

 

As it moves into its third year the Phoenix Rising newsletter will undergo some changes. The issues will be shorter and more theme-oriented and will probably come out more frequently. The advocacy interviews will continue and an attempt will be made to interview physicians as well.

 

If you've attempted to contact me regarding the newsletter or web site and I haven't replied I apologize. About 10% of all subscriptions are automatically returned because of e-mail problems. I'd assumed that e-mail process differentiated between automatically returned messages and actual e-mails but it doesn't some e-mails have been buried in the mass of returned e-mails. Please e-mail again if you didn't receive a reply to a message.

 

The newsletter has fallen behind because of computer problems and work on upgrading the web site. Expect several newsletters to come your way soon as I catch up.   

 

Yours truly, Cort

 

How to Know When Its Time to Find a New Doctor - http://www.healthcentral.com/chronic-pain/doctors-162172-5.html?ic=6009

 
Spiritual Corner

Read the inspirational message from Rest Ministries, "Let it Go" at : http://chronicillnesssupport.typepad.com/dailydevotionals/2008/01/let-it-go-1.html 

Author Unknown

I knelt to pray but not for long,
I had too much to do.
I had to hurry and get to work
For bills would soon be due.
So I knelt and said a hurried prayer,
And jumped up off my knees.
My Christian duty was now done
My soul could rest at ease.....
All day long I had no time
To spread a word of cheer
No time to speak of Christ to friends,
They'd laugh at me I'd fear.
No time, no time, too much to do,
That was my constant cry,
No time to give to souls in need
But at last the time, the time to die.
I went before the Lord,
I came, I stood with downcast eyes.
For in his hands God! held a book;
It was the book of life.
God looked into his book and said
"Your name I cannot find
I once was going to write it down...
But never found the time"
 

Nancy Henson
Charlotte Area ME/CFS/FMS, Charlotte, NC