Charlotte CFS/ME/FM Support Group Newsletter

for March 4, 2014

 

Hi everyone,

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.

Directions:  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 marked "6" where we meet.

Remember no perfumes so as not to make those with MCS ill and no smoking anywhere on the church grounds.

 

*************************************************************************************************

 

Upcoming Meetings

 

April 17 - 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.

 

May 15 - Gloria Smith -  Coordinator of the SolveCFS 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 changes.

 

************************************************************************************************

 

 

SolveCFS.org (Formerly CFIDS.org) 

 

SolveCFS Biobank

 

A persistent shortage of volunteers for clinical trials slows scientific progress. Patients pay the ultimate price for under-enrollment in clinical research, facing few new treatment options. The science needs you! Overall: 

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.

 

 

What is Environmental Medicine?

 

Environmental 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.

Environmental medicine is a multidiscipline and integrative systems approach to the practice of medicine.

To learn more about Environmental Medicine, go to:

http://johnmolot.com/

 

 

Daily Fibromyalgia, Chronic Fatigue Syndrome/ME and Wellness News

To receive ProHealth's newsletters, you can subscribe on the front page of the site.

www.ProHealth.com

 

 

NOTE from Nancy:  This is one of 4 similar articles regarding CFS sub-groups.

From Co-Cure.org

Date:    Fri, 21 Feb 2014 23:57:14 +0000
From:    Tom Kindlon <tomkindlon@gmail.com>
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)

Abstract Text:
DESCRIPTION (provided by applicant):
Chronic 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 puncture; and
(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 groups.

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 Statement:

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 brain.

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.

http://www.healthcentral.com/utils/newsweb/chronic-pain/news-sp.html

 

FDA Invites Patient Comments for Public Meeting on Fibromyalgia

Karen Lee Richards Health Guide February 22, 2014

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:

·          

o    Patient input on the impact fibromyalgia has on daily life.

o    Patients’ views on currently available therapies to treat the condition.

This is a rescheduling of the original December 10, 2013 meeting.   See more at:

http://www.healthcentral.com/chronic-pain/c/5949/167577/fda-patient-fibromyalgia#sthash.8ELJTQqO.dpuf

or

http://www.healthcentral.com/chronic-pain/c/5949/167577/fda-patient-fibromyalgia

 

From ME/CFS HealthWatch

 

Topics:

IOM Meeting

The Webinar

Searching for the Beginnings of CFS

http://www.prohealth.com/em/EM022614C/index.cfm?slvor=11599.1145607.0.1.0.86766&eid=nmhenson@aol.com

 

A Link Between Fibromyalgia and Heart Disease?

Karen Lee Richards Health Guide February 26, 2014

·        

 

 

  A recent study found that fibromyalgia patients may be at higher risk for cardiovascular disease in the future.

 

- See more at: http://www.healthcentral.com/chronic-pain/c/5949/167678/fibromyalgia-disease#sthash.KzDsCd92.dpuf

or

http://www.healthcentral.com/chronic-pain/c/5949/167678/fibromyalgia-disease

 

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/

 

From Co-Cure.org

Date:    Wed, 26 Feb 2014 15:29:07 -0500
From:    elena@CFIDSSELFHELP.ORG
Subject: NOT:
Current Feature Articles at CFIDS/FM Self-Help

Currently featured articles at The CFIDS & Fibromyalgia Self-Help Program website: www.cfidsselfhelp.org

1) "Sensory Overload: Sources and Strategies"
http://www.cfidsselfhelp.org/library/sensory-overload-sources-and-strategies


Too much sensory information? Read about causes, treatments and prevention.

2) "Learning to Manage Fibromyalgia"
http://www.cfidsselfhelp.org/library/learning-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
www.cfidsselfhelp.org

 

 

Support Group Leader, Board Members, and Sources of Info for Doctors and Patients:

Kebbie Cannon - Support Group Leader (704) 843-1193 at kebbie1@windstream.net 

Treasurer -Leslie Vann at llvann@usa.net

Newsletter Editor is Nancy Henson at nmhenson@aol.com

- Publicity Chairman is Howard Honeycutt at honeycutt2194@carolina.rr.com

- Facilitator - Bethanie Massey at bethanieann@gmail.com

- 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.CharlotteCFS.org

- 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: http://www.cfstreatment.info/

- Valuable Site for ME/CFS/FM Information by Cort Johnson http://www.cortjohnson.org/

- Long Time Source of Help for ME/CFS/FM and related disorders along with supplements with proceeds of sales going to help ME/CFS/FM  http://www.prohealth.com/index.cfm