Charlotte CFS/ME/FM Support Group Newsletter
for March 4, 2014
Our meeting later this month on March 20, will feature Nancy Waring, Ph.D,
speaking on "Learning to
Live With Chronic Illness." Dr. Waring has been with us many
times. She is a psychologist and works for Carmel Counseling Center.
She plans to speak, offering her comments, and afterwards there will be time for
questions and comments. People often want to ask a question during the
presentation but if you can, please write down your questions and if possible
wait until the end to ask questions.
I'll send a reminder newsletter a few days before the meeting for those wanting
to attend will receive a reminder just before the meeting.
As always, our
meetings are at 7:00 PM at Sharon Presbyterian Church ( 7-9 PM), located 0.8
miles south of SouthPark Mall at 5201 Sharon Road. Use the entrance closest to
the mall if you can. There is a second entrance but you'll have to weave around
in order to find the parking lot to the left of the sanctuary building (left as
you would be facing the building).
We meet in the Charles Little Activity Building (or CLAB), which is the brick
building at the rear of the parking lot. We have a new meeting room - Classroom
6. When you come into the building, go past the door to the Parlor where we
used to meet and walk into the gym and immediately turn left. You come to a door
where we meet.
Remember no perfumes so as not to make those with MCS ill and
no smoking anywhere on the church grounds.
- Dr. Charles Lapp
- Sharing some of the proceedings of a recent ME/CFS Conference as well as
taking questions on any ME/CFS or Fibromyalgia topic.
- Gloria Smith
- Coordinator of the
BioBank & Patient Registry. More volunteers are needed for this project. We
will have Gloria speak to answer your questions. And, you can go to BioBank@CFIDS.org
or call her at 704-362-2343!
Read the short article I've included below.
Note: Always check
the latest newsletter - there are 2 per month - to be aware of any last minute
shortage of volunteers for clinical trials slows scientific progress. Patients
pay the ultimate price for under-enrollment in clinical research, facing few new
The science needs you!
30% of all clinical
trials fail to recruit a single person
85% of clinical trials
face delays due to limited participation
Fewer than 10% of
patients ever take part in trials, despite overwhelming interest in working
with scientists to help speed treatment breakthroughs
In 2014 , SolveCFS is taking steps to expand the SolveCFS
BioBank to also serve as a Patient Registry. When you sign up for our BioBank &
Patient Registry, think of yourself as the research national guard, ready to be
called into duty when needed.
medicine recognizes, treats, and prevents illnesses induced or impacted by
exposure to chemicals encountered in air, food, and water.
It considers the
impact of the environment on many common illnesses such as diabetes,
cardiovasular disease, respiratory conditions and neurodegenerative disorders as
well as new, emerging illnesses such as chronic fatigue syndrome, fibromyalgia,
sick building syndrome and multiple chemical sensitivities.
medicine is a multidiscipline and integrative systems approach to the practice
To learn more about
Environmental Medicine, go to:
Daily Fibromyalgia, Chronic Fatigue Syndrome/ME and Wellness News
ProHealth's newsletters, you can subscribe on the front page of the site.
This is one of 4 similar articles regarding CFS sub-groups.
Date: Fri, 21
Feb 2014 23:57:14 +0000
From: Tom Kindlon <firstname.lastname@example.org>
Subject: RES: (Ongoing) "Neuropathologic
Abnormalities Define a subgroup of patients with CFS"
[This started in 2011, but I think hasn't been highlighted on Co-Cure before.
I've given each sentence its own paragraph to make it easier to read. Tom (@TomKindlon)]
Project Start Date: 15-AUG-2011
Project End Date: 31-JUL-2014
Project Number: 5R21NS075653-02
Contact PI / Project Leader: NATELSON, BENJAMIN
Title: NEUROPATHOLOGIC ABNORMALITIES DEFINE A SUBGROUP OF PATIENTS WITH CFS
Awardee Organization: BETH ISRAEL MEDICAL CTR (NEW YORK)
DESCRIPTION (provided by applicant):
fatigue syndrome (CFS) is a debilitating multi-symptom disorder characterized by
unexplained and prolonged fatigue, whose diagnosis is currently based on a
relatively broad clinical case definition.
Consequently, the pool of CFS patients included in clinical studies of the
illness is greatly heterogeneous - a fact that might have impeded research
progress to date.
A major step forward in understanding the pathophysiology of CFS would involve
reducing this heterogeneity by identifying one or more subgroups of patients
with different pathophysiological causes of their illness, and then selecting
one of these subgroups for inclusion into research studies.
Over the past few years, we and others have provided substantial data supporting
the existence of a subgroup of patients with a neurobiological cause for their
illness, based on stratifying the
sample according to the absence or presence of comorbid Axis I psychopathology (CFS-no
psych or CFS-NP and CFS-psych or CFS-P, respectively).
Compared to CFS-P patients, the CFS-NP patients had more cognitive dysfunction,
a higher rate of abnormal cerebrospinal fluid (CSF) findings, lower regional
cerebral blood flow (rCBF), and higher ventricular CSF lactate values.
A further complication and limitation of these studies is that each had
investigated only one brain-related variable, whose utility in separating CFS
patients into subgroups was limited.
The purpose of the present Exploratory/Developmental Research Grant (R21)
proposal is to rigorously assess and confirm whether patients in the CFS- NP
group have consistent abnormalities across several different neuropathological
variables - an outcome that would be expected if this group, in fact, does have
distinct neurobiological underpinnings.
Specifically, in the same subjects, we will
(a) assess cognitive function using objective neuropsychological testing;
(b) conduct biochemical analysis of spinal fluid samples obtained by lumbar
(c) measure rCBF and ventricular lactate using magnetic resonance imaging and
spectroscopy, respectively, in CFS-P and CFS-NP patients.
This will allow us to test the hypothesis that CFS-NP patients have more
abnormalities in these outcome variables than CFS-P patients.
Our second Aim will use the results from the first Aim in a cluster analysis to
attempt objective, data-driven classification of the CFS subjects into subtypes,
and then compare the resulting subgroups based on membership into CFS-NP or CFS-P
This aim will test the hypothesis that the results of the cluster analysis will
identify a group with abnormalities across the multiple brain-based variables
studied, and this group will be constituted of significantly more CFS-NP
patients than in other groups.
Public Health Relevance
Chronic fatigue syndrome (CFS) is a medically unexplained debilitating disease
that is diagnosed by the presence of a set of predefined symptoms.
Because there are no validated diagnostic tests for the illness, progress in
understanding its causes has been slow.
From a series of studies by our group and others there has emerged strong
preliminary evidence that supports the existence of a subgroup of CFS patients
whose illness appears to be due to specific biological abnormalities in the
The purpose of this Exploratory/Developmental grant proposal is to conduct
carefully controlled studies that will seek to confirm the existence of such a
subgroup of CFS patients.
If successfully completed, this study could validate an approach for selecting
more homogeneous CFS patient populations in future research studies to enable
them to focus better on understanding the exact cause of CFS and developing
effective treatments for the illness.
News from Health Central re: Pain Meds, Metal Allergies, etc.
FDA Invites Patient Comments for Public Meeting on Fibromyalgia
The FDA is conducting a public meeting on
Patient-Focused Drug Development for fibromyalgia on March 26, 2014. The main
information they are interested in obtaining is:
Patient input on the impact fibromyalgia has on daily life.
Patients’ views on currently available therapies to treat the condition.
This is a
rescheduling of the original December 10, 2013 meeting.
See more at:
Searching for the Beginnings of CFS
A Link Between Fibromyalgia and Heart Disease?
study found that
fibromyalgia patients may be at higher risk for cardiovascular disease in the
- See more at:
THE ENERGY DISORDERS: DIABETES, ME/CFS AND FM – CAN DIABETES TELL US ANYTHING
ABOUT CHRONIC FATIGUE SYNDROME AND FIBROMYALGIA?
By Marco on February 26, 2014 (from Cort Johnson's blog)
Small Fiber Neuropathy In the last year or so we’ve seen four studies published
(1,2,3,4) that have found objective evidence of small fiber polyneuropathy in FM
patients suggesting that the ‘central sensitization’ theory of FM may be at best
incomplete. In fact peripheral nerve damage may be driving pain in FM – but
what’s causing the nerve damage?
Read more: The Energy Disorders: Diabetes, ME/CFS and FM – Can Diabetes Tell Us
Anything About Chronic Fatigue Syndrome and Fibromyalgia? http://www.cortjohnson.org/blog/2014/02/26/energy-disorders-diabetes-cfs-fm-can-diabetes-tell-us-chronic-fatigue-syndrome-fibromyalgia/
Date: Wed, 26 Feb 2014 15:29:07 -0500
Current Feature Articles at CFIDS/FM Self-Help
Currently featured articles at The CFIDS & Fibromyalgia Self-Help Program
1) "Sensory Overload: Sources and Strategies"
Too much sensory information? Read about causes, treatments and prevention.
2) "Learning to Manage Fibromyalgia"
Getting a diagnosis of FM after more than two decades of suffering
triggered a process of change in Denise Le Clair that produced a greatly
improved quality of life.
A 501(c)(3) non-profit organization, the program has conducted hundreds of
self-help classes since 1998. The program's website contains information
about our self-management courses, plus several hundred articles on topics
such as coping strategies, pacing and support. In addition, there are many
patient success stories and information for family and friends.
Bruce Campbell, Ph.D., Executive Director
CFIDS & Fibromyalgia Self-Help Program
Leader, Board Members, and Sources of Info for Doctors and Patients:
Support Group Leader (704)
-Leslie Vann at
Editor is Nancy Henson at
- Publicity Chairman
is Howard Honeycutt at
- Facilitator -
Bethanie Massey at
- Medical Advisor Dr.
Charles Lapp, Hunter Hopkins Clinic in Charlotte. You can visit
Dr. Lapp's Web Site at
www.drlapp.com where there is ample info about his clinic and making an
appointment if you need. It offers many links to other sources of information.
- Visit our web site at
- www.DrLapp.net -
Going thru Dr. Lapp's site you'll find links to various sorts of help, one of
the best self help sites on the Internet is Bruce Campbell's self-help site at
www.cfidsselfhelp.org (Dr. Lapp was involved in this).
Treatment - Another site, which
is primarily directed toward helping your
doctors treat these disorders but that info is
quite beneficial for patients to be aware of, is:
Valuable Site for ME/CFS/FM Information by Cort Johnson
Time Source of Help for ME/CFS/FM and related disorders along with
supplements with proceeds of sales going to help ME/CFS/FM