Charlotte CFS/ME/FM Support Group Newsletter

for June 1, 2012

 

Hi everyone,

This month's meeting, Thursday, June 21st, at 7:00 PM, George Piemonte , the Action Advocate, will discuss disability issues & answer your questions http://www.lawyer.com/george-piemonte.html .   And my apologies for such a lengthy newsletter this time. There's just so much news.  But you will get another reminder for the meeting just prior to the meeting. 

As always, our meetings start at 7:00 PM and wind up around 8:30-9:00 PM at Sharon Presbyterian Church, located 0.8 miles south of SouthPark Mall on 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.  As you come into the building you should see a sign for the meeting, then after you get inside - go into the first door on your right - the Parlor - where our group meets.

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

 And if you need further directions, you can call me at 704-563-0657.

 

 

Upcoming Meetings (Subject to Change)

 ·  NOTE:  During the summer we have daytime luncheons instead of nightime meetings.

 ·  July 19 -- Luncheon at Panera's, Carmel and Pineville-Matthews Roads

·  August 16-- Luncheon at Panera's, Matthews 

NOTE:  I'll have better directions in my next newsletter. 

Also, Its that time again when we need to have another board meeting to discuss our fall schedule.  Anyone interested in becoming more involved with the support group, please consider coming to the next board meeting We'll announce the date once its confirmed.

 

 Topics in this newsletter

 - New Physicians Primer from the IACFSME Org

- New Free-Access Fibro Mgmt Guide for Primary Care Doctors

- NIH Fibromyalgia Study

- CFIDS/FM Self-Help:  Symptoms of CFS/FM & Treatment Principles

- Guide to Managing Fibromyalgia for Your Doctor

- Less Connectivity & Pain Dysregulation In Fibromyalgia

- From Lisa Lorden - Former About.com CFS/FM Forum Guide - Free Lance

- New Feature at Lapp-Campbell Website - Successful Mgmt of FM

- NeedyMeds Video:  Finding Help with Medical Expenses, Karen Richards

- A Conversation with Roger King and Wilhelmina Jenkins

- Research1st Recent E-Newsletter

- CFS - The Mold Tour New Blog at CFSUntied

- Functional Bowel Symptoms, Fibromyalgia & Fatigue, Food Induced Triad?

- Doc to Doc: The “Skinny” on Exercise and CFS
- Last Call - FM & Family Impact Study

  -CFIDS/FM Self-Help Viceo: Symptoms of CFS & FM & Treatment Principles

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

 New Physicians Primer from the IACFSME Organization

 Please note that our primary care physicians are not automatically being provided with this primer via the CDC or any organization.  Its up to the doctor to know about this and print it him or herself or for the patient to print the 42 page document themselves for their doctor.

 If you could donate a little towards printing expenses, we will "try to have" copies of these at future meetings.

  http://www.iacfsme.org/Portals/0/PDF/PrimerFinal3.pdf

  

New Free-Access Fibromyalgia Management Guide for Primary Care Doctors, Online Now ProHealth.com; May 17, 2012

Four fibromyalgia specialists - Lesley M Arnold, Daniel J Clauw, L Jean Dunegan, and Dennis C Turk – have developed an educational framework that primary care doctors can use as a guide to best practices in fibromyalgia case management.

The guide - A Framework for Fibromyalgia Management for Primary Care Providers - was published in the May 2012 issue of Mayo Clinic Proceedings, and can be accessed online free @

http://www.mayoclinicproceedings.org/article/PIIS0025619612002996/fulltext.

(Scroll down to read all, or click on items of interest in the Article Outline.)

The guide is written in such a way that it can help fibromyalgia patients inform themselves as it educates and guides their physicians. 

Special features include:

1. A flow chart of key FM case management tasks and objectives (see
“Core Principles”). 

2. A table of basic pharmaceutical therapy guidance – e.g., dosing considerations and possible outcomes/implications for each FDA-approved drug option mentioned.

3. Similar information regarding non-drug therapies.

4. Links to educational resources that are helpful to inform patients;

5. And, for physicians, links to 45 footnoted sources in the medical literature that provide 'evidence-based' background for many aspects of fibromyalgia and FM patient care discussed in the guide.

The new
Framework for Fibromyalgia Management for Primary Care Providers is part of the FibroCollaborative Working Group’s 2010 “Roadmap for Change” – an initiative sponsored by Pfizer and supported by representatives of more than 20 fibromyalgia medical / professional and advocacy organizations across the US. Members are listed in a footnote to the guide.

NIH Fibromyalgia Study

Fibromyalgia and PROMIS study. This study will take approximately 15 to 20 minutes. You will be filling out several online questionnaires. Please answer all the questions thoroughly and honestly. There are no right or wrong answers, just what is true for you.

Please try and complete the study all at once. If you need a break, you can return to the website and complete the study at a later date. However, please do this within 2 days of your initial log in date. Remember to write down your login ID and password.

At the beginning of the study, you will be asked to provide your name and mailing address for payment purposes only and sign a consent form agreeing to participate in this study.

Thank you for taking the time to help improve the assessment of fibromyalgia.

https://www.assessmentcenter.net/ac1/Default.aspx?SID=A808CA2C-1A67-4589-AC79-7F0182F71EAF

From Co-Cure:

Date:    Thu, 24 May 2012 20:26:51 -0700
From:    Bruce Campbell <bruce.campbell@flash.net>
Subject:
This Week's Featured Video at CFIDS/FM Self-Help: Symptoms of CFS & FM & Treatment Principles

This week’s featured video: “Symptoms & Treatment Principles”: The many symptoms of CFS and FM. Also, four treatment principles.

Our YouTube channel has 43 videos:

    Treating Symptoms (14)
    Pacing (24)
    Understanding Your Situation (4)

The videos are short (typically 7 to 10 minutes), with each focused on a single topic. The format is audio explanations with slides.

See the full list and click thru from our website: http://www.cfidsselfhelp.org/videos

Or view them on our YouTube page:
http://www.youtube.com/user/CFIDSselfhelp/featured


Bruce Campbell, Ph.D., Executive Director
CFIDS & Fibromyalgia Self-Help Program
www.cfidsselfhelp.org

 

Less Connectivity & Pain Dysregulation in Fibromyalgia

By Adrienne Dellwo, About.com Guide, May 14, 2012

Research Brief

New research demonstrated that the brains of people with fibromyalgia have physiological dysregulation in the pain inhibition network.

Pain inhibition is a process by which repeated painful stimuli, in a health person, hurts progressively less. Previous studies have shown that this network doesn't work properly in fibromyalgia, meaning that repeated stimuli hurts progressively more in people with the illness.

To read more, go to:  http://chronicfatigue.about.com/b/2012/05/14/less-connectivity-pain-dysregulation-fibromyalgia.htm?nl=1

 

 From Lisa Lorden

 Be sure to read the article below.  I must confess to having been really turned off by the lack of effort on patient issues (other than research) as exhibited by the CFIDS Association of late. But after reading Lisa's article, I am once again hopeful.  I got warm fuzzies - so CAA - please don't disappoint me. A lot of people read this newsletter.

 So please read this and follow the CAA activities by subscribing to Research1st by going to the May issue at http://www.research1st.com/wp-content/uploads/2012/01/May-9-issue.pdf then go about 1/3 of the way down look on your left where it talks about joining the mailing list and how CFIDSLINK is now Research1st.  Now read:

 

"A Catalyst for Hope"

 I recently attended a “Catalyst Café” in Los Angeles that affected me in a deep way and on a variety of levels. Somewhere along the line I had become resigned to a belief that treatment for CFS/FM won’t really change in my lifetime. But what if things could change? Suddenly, where there had been doubt and discouragement, I felt hope, recognizing that we are not alone. To read more, go to http://livingwithcfs.com/a-catalyst-for-hope/

 

Lisa's Blog site http://livingwithcfs.com/blog/

 Lisa on Facebook

http://www.facebook.com/livingwithcfsandfibro.

  

From Co-Cure 5/16/12

Subject: NOT: New Feature at Lapp-Campbell Website - Successful Management of FM
Date:    Tue, 15 May 2012 08:03:26 -0700
From:    Bruce Campbell <bruce.campbell@flash.net>
New featured success story on the Lapp-Campbell website: www.treatcfsfm.org

How I Use Routine to Successfully Manage FM
"During my time with fibromyalgia, I have learned that if I am sensitive to
my symptoms and willing to adjust my routines, I can have a full and happy
life with fibromyalgia. "


Bruce Campbell, Ph.D., Executive Director
CFIDS & Fibromyalgia Self-Help Program
www.cfidsselfhelp.org

 

 NeedyMeds Video: Finding Help with Medical Expenses

By Karen Lee Richards, Health Guide, Health Centra - Chronic Pain

 

Medical costs continue to rise and unemployment is still high. The result? More and more of us are finding ourselves without medical insurance; or if we do still have insurance, we're finding that they are paying for less and less.

Two nonprofit organizations recently teamed up to help us find resources that offer assistance when we we find ourselves in those situations. PANDORA, a nonprofit serving people with fibromyalgia, ME/CFS and other NeuroEndocrineImmune diseases, and NeedyMeds.org produced a Webinar that teaches us how to navigate the NeedyMeds Website and find the programs that may be able to help us.


To continue:  http://www.healthcentral.com/chronic-pain/c/5949/153008/needymeds

 

A Conversation with Roger King and Wilhelmina Jenkins

Novelist and filmmaker Roger King has written a new autobiographical novel, Love and Fatigue in America, about his journey in the U.S. following his diagnosis with CFS: 

http://www.research1st.com/2012/05/13/may-9-webinar/

 

Most Recent E-Newsletter from Research1st

 The above article is from this e-newsletter.

 http://www.research1st.com/wp-content/uploads/2012/01/May-9-issue.pdf

  

From Co-Cure.org

 Date:    Mon, 21 May 2012 14:00:13 -0700
From:    Khaly Castle <khalyal@YAHOO.COM>
Subject: ACT:  CFS - The Mold Tour new blog at CFSUntied

"Our journey through the history of CFS began just as described in Hillary Johnson’s book, Osler’s Web: Inside The Labyrinth of the Chronic Fatigue Syndrome Epidemic. Setting out by automobile, we retraced the 1985 route of CDC epidemiologists Kaplan and Holmes on their way to investigate the “mystery malady” reported by Drs. Peterson and Cheney."
 
http://cfsuntied.com/blog2/2012/05/21/cfsthe-mold-tour/
 
Thanks all,
Khaly
khalyal@yahoo.com
khaly@cfsuntied.com

 

Date:    Tue, 22 May 2012 18:03:48 +0200
From:    "schuetz-lohmar@t-online.de" <schuetz-lohmar@T-ONLINE.DE>
Subject: RES: Functional bowel symptoms, fibromyalgia and fatigue: A food-induced triad?

http://www.ncbi.nlm.nih.gov/pubmed/22594347


Scand J Gastroenterol. 2012 May 18. [Epub ahead of print]

Functional bowel symptoms, fibromyalgia and fatigue: A food-induced triad?

Berstad A, Undseth R, Lind R, Valeur J.; Source: 
Unger-Vetlesen's Institute, Lovisenberg Diakonale Hospital.

Abstract

Abstract Objective. Patients with perceived food hypersensitivity typically present with multiple health complaints. We aimed to assess the severity of their intestinal and extra-intestinal symptoms. Materials and methods. In a prospective study, 84 patients referred to our outpatient clinic for investigation of perceived food hypersensitivity were enrolled consecutively. Irritable bowel syndrome (IBS) was diagnosed according to the Rome III criteria.

 Severity and impact of bowel symptoms, fatigue and musculoskeletal pain were evaluated by using the following questionnaires: The IBS Severity Scoring System (IBS-SSS), the Fatigue Impact Scale (FIS), the FibroFatigue Scale (FFS), and visual analogue scales (VAS) for scoring of musculoskeletal pain. Results.

 All but one patient were diagnosed with IBS, 58% with severe symptoms. Extra-intestinal symptoms suggestive of chronic fatigue and fibromyalgia were demonstrated in 85% and 71%, respectively. Neither IgE-mediated food allergy nor organic pathology could explain the patients' symptoms. Nevertheless, malabsorption of fat was demonstrated in 10 of 38 subjects. Conclusions. Perceived food hypersensitivity may be associated with severe, debilitating illness.

 The comorbid triad of IBS, chronic fatigue, and musculoskeletal pain is striking and may point to a common underlying cause.

 
 

A Guide to Managing Fibromyalgia for Your Doctor

Health Central on Chronic Pain
PMID: 22594347 [PubMed - as supplied by publisher]

 

By Karen Lee Richards, Health Guide Thursday, May 24, 2012

Despite the fact that a great deal has been learned about the pathophysiologic mechanisms involved in fibromyalgia in recent years, many primary care physicians (PCPs) are still reluctant to diagnose and treat FM patients. As a result, it is estimated that FM remains undiagnosed in as many as three out of four people who have it. And it is still taking an average of five years to get an accurate diagnosis.

For this reason, in 2009 a diverse group of medical, professional and patient advocacy organizations got together for the purpose of improving the recognition, diagnosis and management of people with fibromyalgia. Together in 2010, they developed The
FibroCollaborative Roadmap for Change: A Call to Action for Fibromyalgia.  Your can access that at:

http://www.npwh.org/files/public/FibroCollaborative%20Roadmap%20%282%29.pdf

To continue in Karen's newsletter:  http://www.healthcentral.com/chronic-pain/c/5949/153249/fibromyalgia

ALSO:

Distraction Reduces Pain Signals in Spinal Cord

Many of us with chronic pain have noticed that when we get deeply involved in a task that requires concentration, we don't notice our pain as much. I always figured that was because we were focusing our minds on the task at hand rather than on the pain. But according to the findings of a recent two-part study published in the journal Current Biology, when our minds are engaged in a difficult mental task, our bodies actually send fewer pain signals to our brains.   Study Design and Results   In the first part of the study, researchers gave 20 young men either a simple or a difficult memory task that required them to remember a random series of 15 letters displayed on a screen. While they were engaged in the task, a painful h...

You can read the rest of this SharePost by visiting:
http://www.healthcentral.com/chronic-pain/c/5949/153240/distraction

 

From Co-Cure.org

Date:    Sat, 26 May 2012 16:39:25 -0500
From:    kelly <kellylatta66@gmail.com>
Subject: RES: Doc to Doc: The “Skinny” on Exercise and CFS

Note: The three ME and CFS specialists in this article are Drs.
Lucinda Bateman, Nancy Klimas and Susan Levine. Drs. Bateman and
Klimas were also among the authors of the 2011 Myalgic
encephalomyelitis: International Consensus Criteria. The criteria
states in part:

A. Postexertional neuroimmune exhaustion (PENE pen’-e): Compulsory

This cardinal feature is a pathological inability to produce
sufficient energy on demand with prominent symptoms primarily in the
neuroimmune regions. Characteristics are as follows:

http://www.cfids.org/sparkcfs/exercise.pdf

Note from Nancy:  This article was printed in a former CFIDS Association periodical some years ago.

Last Call: Fibromyalgia and Family Impact Survey

If you have fibromyalgia and haven't yet completed the Fibromyalgia and Family Impact Survey, I want to encourage you to take a few minutes and fill out the survey. The survey will be available through June 5, 2012.   So far, 5,850 people have participated in the survey. That's an amazing number and Dr. Marcus and I are so grateful to each and every one of you who has responded. Now we're trying to make one last effort to see if we can break the 6,000 mark.   The more people who participate, the more impact the results of the study will have. We want the healthcare professionals who care for you to better understand just how much fibromyalgia affects your life – especially your family and interpersonal relationships.

You can read the rest of this SharePost by visiting:
Last Call: Fibromyalgia and Family Impact Survey

Additional SharePosts from Karen Lee Richards can be accessed here:
Karen Lee Richards's SharePosts

 

Humor for Today

I found this particularly funny because of how I remember my son used to fix his cars.

http://www.twodorks.com/walmart_carshow.html


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

Our Support Group Leader and Board Members:

- Our Support Group Leader is Kebbie Cannon at  kebbie1@windstream.net or Asst. Support Group Leader, Maggie Reed at Maggie_Reed@comporium.net

 

- Medical Advisor Dr. Charles Lapp, Hunter Hopkins Clinic in Charlotte.  You can visit Dr. Lapp's Web Sites at www.drlapp.com where there is ample info about his clinic and making an appointment if you need.  His other site, which is primarily director toward helping your doctors treat these disorders, is  http://www.cfstreatment.info/

 

- Our Treasurer is Leslie Vann at llvann@usa.net

 

- Newsletter Editor is Nancy Henson at nmhenson@aol.com

 

- Visit our web site at www.CharlotteCFS.org