Charlotte CFS/ME/FM Support Group NewsletterforMarch 5, 2008
We have a new and exciting change
to announce. Dr. Lapp has graciously set up a web site
for us as part of his web site. To link to it, go to
This site contains the same information as my old one on AOL but with a much
easier name to remember. It also has another wonderful feature. You can
access old e-newsletters. Dr. Lapp has a feature for sending out
newsletters in one process instead of the way I've had to do it 20-25 at a
time. I don't know how far back we will go with the newsletters but we'll
get to that in time. I'm also not sure what all the other new features the
site will be able to offer but stay tuned! This is a great day for
our group.
Thanks so much Dr. Lapp!!!
3 Petitions
Subject:
NAME, ACT: Three petitions
MAY BE REPOSTED IN FULL:
There are now three petitions calling for action regarding the disease the
CDC named "chronic fatigue syndrome" in the United States.
1. Petition for recognizing Myalgic Encephalomyelitis (M.E.) in the United
States [code 323.9 in ICD-9-CM]:
http://www.rescindinc.org/me-petition.html
2. Campaign for a "Fair name" - an ad hoc Name Change Advisory Board chose
the name ME/CFS to replace "chronic fatigue syndrome." The committee
wrote: "Used as an umbrella term, ME/CFS will satisfy those who wish to use
Myalgic Encephalopathy, and those who prefer Myalgic Encephalomyelitis.
This is not the same thing as M.E. in petition (1), and not the same thing
as ME/CFS in petition (3).
http://www.afairname.org/cause.cfm
3. Ask the U.S. health agencies to "Adopt the international [or Canadian]
Consensus document" for Myalgic Encephalomyelitis/Chronic Fatigue syndrome.
Note: in this case M.E./CFS is not the same as in petition (2), because it
references the placement of Myalgic Encephalomyelitis and Chronic Fatigue
Syndrome in the chapter on neurology in ICD-10, coded as G93.3. .
http://www.ipetitions.com/petition/consensusdoc/index.html
Anyone who wishes can join the discussion, on any of the three petitions,
at:
http://canadaconsensus.ning.com/
The discussions can be accessed by clicking on "Forum" in the options at the
top of the page, or simply by going here:
http://canadaconsensus.ning.com/forum
Mary Schweitzer
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
To read the "Myalgic Encephalomyelitis/Chronic Fatigue
Syndrome - A Canadian Clinical Case Definition and Guidelines for Medical
Practitioners", go to:
http://www.mefmaction.net/Portals/0/docs//ME-CFS%20Overview.04-07.pdf
Now on to the news of the day regarding upcoming support group
meetings:
The Greater Charlotte Area CFS/ME/FMS Support Group will
have as its speaker at the next meeting, Thursday, March 20th, Jeffery Ewert,
Ph.D, M.D. PsychoNeurologist, speaking on Managing Cognition - He will offer
insight to the testing available that can measure loss of cognitive
function, for those who need that information for disability hearings. And
he also can offer help in learning to live with these losses in Cognition.
As always we meet at the Sharon Presbyterian Church, 7:00 - 9:00PM, in the
Parlor of the Activity Building behind the sanctuary.
There will be refreshments thanks to Lauren and Dr. Lapp and an information
table with brochures and a huge supply of materials regarding both CFS/ME
and Fibromyalgia.
HopeKeepers of Charlotte -
weekly faith-based support group for chronic, invisible illness. Pineville
Church of the Nazarene, 8614 Pineville-Matthews Rd., Charlotte, NC 28226,
Tuesdays, at 7:00 PM., Room 420 of the Family Life Center. To enter the
parking for the FLC, take the side street and you can park either on the
side or behind the FLC. For more information you can contact Renae Savage at
either
hopekeepers@carolina.rr.com or 704-341-0959.
Gastonia FM/CFS Support Group Meeting
- The 3rd Thursday of the month, meeting at Bethlehem Baptist Church, off
New Hope Rd. and 85, behind CarMax and Bojangles at 1PM until 2:30 PM. For
more information, contact Victoria Bonner at
vbonner2@lycos.com .
New Fibromyalgia Support Group in Huntersville
This women's group meets the first
Monday of each month at 1PM, with the next meeting occurring on March 3rd.
Their speaker for March is Dr. Michael Shipley who is a chiropractor. The
meetings are held at "Inches-A-Weigh", 15905 Brookway Drive, Suite 4104,
Huntersville. These meetings are organized the center's manager, Lisa
Morgan. Seating is limited so please call and make a reservation at
704-987-8840. Please note: This is a women only group.
Arthritis Services
This group offers a Fibromyalgia support group with monthly meetings the
third Wednesday of each month. The meetings are held at Arthritis
Services, 500 E. Morehead Street, Suite 320 at 1PM.
Also, they are offering relaxation series (has already begun) by certified
rehabilitation counselor Joseph Pope. The dates are March 5 and March 12
from 9:30 - 10:30 AM at Arthritis Services.
If you need more
information, you can contact Arthritis Services at 704-331-4878.
Mike Munoz and the Rocky
Mountain CFIDS and FMS Association: Empowerment Through Education
The Rocky Mountain CFIDS/FMS Support Group;
Treatment & Research News - ME/CFS Edition 02-27-08 - To read
more articles:
Date: Fri, 29 Feb 2008 13:14:09 -0800
From: "DFW CFIDS <dfwcfids58@tx.rr.com>............via Co-Cure
Moderators"
<cocuremoderator@CHARTER.NET>
Subject: Dr. Paul Cheney speaking in CA in May (and in Germany in
August)
Dr. Paul Cheney will be the opening speaker at the 15th International
Symposium of Functional Medicine in Carlsbad, CA on Thursday May, 22. He was
given the privilege of speaking for the entire morning session of the first
day. This is a high profile meeting with 800 to 1,000 attendees gathering
from
around the world for the four-day conference.
A 10-person program committee questioned Dr. Cheney at length for two hours
via conference call before offering him this opportunity. He will be
presenting his current diagnostic and therapeutic model for CFS. This is
rather amazing in that the symposium topic this year is pain, but it was
felt
that Dr. Cheney's work not only offers groundbreaking info on CFS, but also
has such profound implications for a great many chronic conditions that his
work needs to be presented now.
Here is the description of his presentation from the IFM's web site:
"Chronic Fatigue Syndrome, Oxidative Stress, and Pain: A Physician's
Personal
and Professional Journey Through the Functional Medicine Model"
"Dr. Cheney has been involved in research and treatment of chronic fatigue
syndrome (CFS) for over 15 years. His persistent and thoughtful evaluation
of
these phenomena clearly demonstrates the functional medicine model. Dr.
Cheney
has painstakingly developed the hypothesis that low cardiac output is a
significant underlying dysfunction in CFS patients. He posits that CFS
patients have a diminished threshold for oxygen toxicity, suggesting that
fatigue is an adaptive consequence. In this sense, CFS patients' energy
decline may be viewed as a protective strategy against the effects of oxygen
metabolism, which they are unable to handle. He suggests that therapy be
directed to protect the brain from oxidative stress and to improve energy
production."
Brochure for the Institute of Functional Medicine Conference in May,
featuring
Dr. Cheney:
http://www.functionalmedicine.org/content_management/files/15thSympBrochureWeb.pdf
Main site:
http://www.functionalmedicine.org/eduprog/symp_next.asp
Unfortunately for the majority of the patient community, the cost and
seminar
content are intended for professional healthcare practitioners. (It's $250
just to attend the first day, when Dr. Cheney will be speaking.) The
Institute
for Functional Medicine does sell DVDs and other media formats of
presentations, however. Currently, only products from previous symposiums
are
listed in their store, but you can get an idea of their prices.
Hopefully Dr. Cheney will be presenting a patient seminar within the next
year
that will produce a DVD set, although that is only a hope at this point. If
a
patient seminar materializes, it will certainly be announced here.
In addition, Dr. Cheney will also be speaking in August to the annual
American
Biologics Symposium in Germany. This is a smaller
(100-200 participants) but influential stage with a predominantly European
audience (Germany, Italy, France, the UK and Eastern Europe).
Diagnosing rheumatoid arthritis
People who have symptoms of arthritis should have a complete medical
evaluation (see "Diagnosing arthritis"). The symptoms and physical examination
are the most important parts of the diagnostic process. The early joint
symptoms of other conditions, such as lupus, are sometimes indistinguishable
from those of rheumatoid arthritis, making a definitive diagnosis difficult
soon after symptoms start. Blood and imaging tests are often ordered to help
with diagnosis. For more of this article, go to:
Spiritual Corner
Listen to Joni Eareckson on the radio:
Joni also has a daily devotional service - here's a collection on the
subject of "hope" :