Charlotte CFS/ME/FM Support Group Newsletterfor October
1, 2008
Hi Everyone!
Due to some technical difficulties - AOL does not offer a data base program so
I have to "punt" with this newsletter, you may be receiving 2 copies this
month. Please do let me know and I'll delete one of the names. Secondly, there
may be a couple of you who asked to be removed and find yourself receiving the
newsletter again. Please let me know, and I'll correct that. If you wish to
be removed, just send me a quick email and I'll delete you from distribution.
Nancy Henson
September's meeting featured Lynn Bishop,
Disability Attorney. Lynn discussed many of the hurdles in
applying for long term disability benefits. We do have some handouts from Ms.
Bishop that you can pick up when you attend a future meeting. You can also
subscribe to her newsletter at
www.lynnbishop.net .
October - Caregivers -
This has always been a popular topic. I don't have the names of the individuals
who will be presenting at October's meeting so be on the alert for the next
newsletter that will have those names.
November - Social Security Benefits
- Mr. John Heath will discuss social security disability and medicare issues.
December - Annual Christmas Party with our very own
Chuck Lapp at the piano. For any of you who are new, we
take this evening to kick back and enjoy some social time together. We bring
finger foods or whatever you'd like to bring. Anything is fine. Or if you
decide to come at the last minute and don't have anything to bring, that's OK
to. Just come!
This E-Newsletter Topics
- CFIDSLink Announcements
- New Chemical Sensitivity Resource Guide
- Disability Guide
- Pepperoni Study

- Importance of Rest!
- Angel Food Ministries
- Understanding Fibromyalgia
- How Biological Abnormalities Separate CFS from Depression
- New Fibromyalgia Research Organization
- Neurotransmitters in FM and CFS
- Timeline for Surviving the Holidays
- Enteroviral Myalgic Encephalomyelitis
- POTS
- Immunological Aspects of CFS
- Evidence of Staphylococcus Biofilm in CFS
CFIDSLink Announcements
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Grassroots Action Center Listserv |
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The CFIDS Association of
America brings you news of three announcements related to health policy:
- Dr. Elias Zerhouni,
director of the National Institutes of Health, announced yesterday that he
would be stepping down from his post effective October 1, 2008.
- President Bush has
not yet signed a funding bill for the departments of Labor, Health and
Human Services,
- The House also
passed the National Pain Care Policy Act of 2008. The National Pain
Foundation, led a coalition of organizations including the CFIDS
Association of America, to introduce this legislation and secure a House
vote before the 110th session of Congress ends. For more information,
please visit
www.painfoundation.org.
To keep up-to-date, subscribe to CFIDSLink at
www.cfids.org . |
Check out the New Chemical Sensitivity Resource
Guide
This resource is generated by a state group in Chicago. But it is very
interesting and may be helpful to someone.
A Guide for people who are preparing to apply
for disability benefits:
This guide is from the National CFS and FMS
Assoc. in Kansas City. This particular article may be particularly helpful for
anyone beginning the social security disabilities "adventures!"
http://www.ncfsfa.org/Patients/ssbenefits.htm
Study: Pepperoni Can Trigger Pelvic Pain
Dr Teitelbaum's Latest E-Newsletter
Angel Food Ministries
With a heart
to help others and a generous spirit, Joe and Linda Wingo founded Angel Food
Ministries in 1994 to provide food for friends and neighbors who were
struggling financially. Today, they are still doing the same thing. The Angel
Food program now is helping provide food relief to more than 500,000 families
each month. To learn more about this:
http://www.angelfoodministries.com/
Understanding Fibromyalgia
This is a wonderful video for a newly diagnosed person and/or for a family
member or friend.
How biological abnormalities separate CFS
from depression - Katherine M. Erdman, MPAS, PA-C --
Katherine Erdman is assistant professor and assistant director, Baylor College
of Medicine PA program, and a PA in the Department of Emergency Medicine at
Lyndon B. Johnson General Hospital, Houston, Texas. She has indicated no
relationships to disclose relating to the content of this article.
Chronic fatigue syndrome and depression share
symptoms and may coexist—but thanks to new efforts
spearheaded by the CDC, skilled clinicians can more easily tell them apart.
Chronic fatigue syndrome (CFS), also called
chronic fatigue immune dysfunction syndrome (CFIDS), is a multisystem illness
characterized by a complex constellation of symptoms. CFS has long been
controversial among health care providers and researchers, in part because of
the difficulty of differentiating it from psychiatric illness. Much has been
written about the underdiagnosis of depression,1,2 but care must be
taken as well to avoid the overdiagnosis of depression in patients who have
unexplained physical symptoms. Although comorbid depression is a common
emotional response to any chronic illness, some patients with CFS are not
clinically depressed. These patients are poorly served when depression is the
only diagnosis they are offered. To read more:
Creation of an International
Research Organization Moves Forward
ANAHEIM, Calif. (September 5, 2008)—At a historic
meeting, moderated by world-renowned researcher Robert Bennett, MD, prominent
Fibromyalgia experts voted unanimously to continue discussions on the
development of a new international professional organization during the
Fibromyalgia Discovery Meeting. The two-day conference was held August 7-8,
2008 at the Airlie Center in Warrenton, Virginia. To read more:
http://www.fmaware.org/site/News2?page=NewsArticle&id=7625
Neurotransmitters in Fibromyalgia & Chronic
Fatigue Syndrome - What's Going On in Your Brain? By
Adrienne Dellwo,
About.com; Updated: September 3, 2008;
About.com Health's Disease and Condition content is
reviewed by
Kate Grossman, MD
Fibromyalgia (FMS) and
chronic fatigue syndrome (CFS or
ME/CFS) long remained mysteries to medical
science, and we're just now getting a picture of what's going on in the body,
and especially the brains, of people with these conditions. One thing that
research has shown, time and time again, is that when you have FMS or ME/CFS,
your neurotransmitters are out of whack. To read more:
http://chronicfatigue.about.com/od/treatingfmscfs/a/neurotranshub.htm?nl=1
Timeline for Surviving the Holidays
(more from Adrienne Dellwo)

Resources for Friends & Family of People
with Fibromyalgia or ME/CFS (Adrienne Dellwo)
Having a friend or family member with fibromyalgia or chronic
fatigue syndrome is difficult. You may be facing extra burdens or a
strained relationship, or even doubts that the person you care about
is really sick. These are all normal issues, and the resources here
can help you handle them. To read more:
From Co-Cure "Enteroviral myalgic
encephalomyelitis - EvME" by Dr. Irving Spurr
A treatise on EvME by Dr. Irving Spurr who argues that "The
enteroviruses, ubiquitous in nature, are responsible for a variety
of human diseases ranging from mild gastroenteritis to fulminating
multi-organ failure. They are the cause of myalgic
encephalomyelitis, and it is no surprise that this disease has
multi-organ involvement with protean manifestation."
http://www.meresearch.org.uk/information/keypubs/EvME.pdf
Postural orthostatic tachycardia syndrome
is an under-recognized
condition in chronic fatigue syndrome.
The Immunological Aspects of CFS (From
Autoimmunity Reviews, Italy)
"Similar disorders (as CFS) have been described for at least two
centuries and have been differently named neurasthenia, post-viral
fatigue, myalgic encephalomyelitis and chronic mononucleosis.
Recent longitudinal studies suggest that some people affected by
CFS improve with time but that most remain functionally impaired
for several years. The estimated worldwide prevalence of CFS if
0.4-1% and it affects over 800,000 people in the US and
approximately 240,00 patients in the UK. No physical examination
signs are specific to CFS and no diagnostic tests identify this
syndrome. The pathophysiological mechanism of CFS is unclear.
The main hypothesis include altered central nervous system
functioning resulting from an abnormal immune response against a
common antigen; a neuroendocrine disturbance; cognitive impairment
caused by response to infection or other stimuli in sentient
people The current concept is that CFS pathogensis is is aa
multifactorial condition. Various studies have sought evidence
for a disturbance in immunity in people with CFS. An alteration in
Cytokine profile, a decreased function of natural killer (NK)
cells , a presence of autoantibodies and reduced responses of T
cells to mitogens and other specific antigens have been reported,
The observed high level of pro-inflammatory cytokines may explain
some of the manifestations such as fatigue and flu-like symptoms
and influence NK activity." To read more:
From CoCure:
EVIDENCE OF STAPHYLOCOCCUS BIOFILM IN CHRONIC FATIGUE
SYNDROME
S. E. Fry; Airpark Medical Center, Scottsdale, AZ.
Chronic Fatigue Syndrome (CFS) is characterized by unrelenting
fatigue of greater than 6 months duration without evidence of
other known disease. Its origin has been hypothesized to be either
psychiatric or viral. Recent work has implicated coagulase
negative staphylococcus as the etiologic agent. Culture studies to
date have been inconclusive. One approach to confirm this
hypothesis is to search for biofilm constituents. Lipoteichoic
acid (Teichoic acid) is considered a constituent of Staphylococcus
biofilm and the detection of antibodies to it have been in
clinical use for nearly 20 years. The level of antibody has been
used as an indicator of Staphylococcus infection and especially
helpful in detecting Staphylococcus in endocarditis and
osteomyelitis. The presence of Teichoic acid antibody in the
normal population has been reported to be between 1-5%.
Twelve patients meeting the CDC criteria for CFS and Fibromyalgia
were tested for antibodies to Teichoic acid. Two national
reference laboratories both utilizing a radio-immunodiffusion
assay were utilized. Two of the patients were male, the remaining
ten patients were female, ages were between 18 and 61 years of
age. A titer of 1:2 or greater was found in eight patients, of
these, two were at a titer of 1:4 and two were at a titer of 1:8.
This small sample displays evidence of elevated antibody to
Teichoic acid in 66% of patients tested, far above the expected
level in the normal population. This information further suggests
that a Staphylococcal organism, with biofilm may be the causal
agent in CFS and Fibromyalgia.
ImmuneSupport.com is Now ProHealth.com: