Charlotte CFS/ME/FM Support Group Newsletter

for April 4, 2012

 

 

Hi Everyone,

 

Our next meeting is April 19th and will be our annual Caregivers Meeting with Dr. Lapp hosting.  More Details will be available in the meeting reminder that will be published the weekend of April prior to the meeting.

 

Articles in This Newsletter

 

- ME/CFS Alerts on U-Tube (via Co-Cure)

- ME Newsletter 12/11/11 from Dr. Lapp 

- Information to Pass Along to Your "Interested Doctor"

- Ampligen for CFS:  Trial Data Released

- Personality & Physiology in Fibromyalgia: A New Discovery

- Multi-tasking:  A Challenge for Patients with CFS

- Understand Fibromyalgia Pain

- What is Happening with the Research into ME and Rituximab

-  Take the ME/CFS Social Security Disability/SSI Survey; by Cort Johnson

-  Dr. Oz and Pain Solutions

 

MECFS Alerts on U-Tube - This is from Co-cure

 

I've been so unable to stay on top of everything that I missed this aspect of information that is being gotten out to all of you on a "regular basis."   I urge you to go to this site and you'll notice other alerts listed to the right of the screen.  Keep your ears open as our own "Chuck Lapp" is mentioned.

 

Date:    Fri, 16 Mar 2012 17:23:34 -0500
From:    Tate Mitchell <tatemitchell@gmail.com>
Subject: NOT: MECFS Alert Episode 22 w/Andreas Kogelnik

http://www.youtube.com/watch?v=pbvmLXiZJ9w

In this episode of ME/CFS Alert, Llewellyn King interviews Dr. Andreas
Kogelnik of the Open Medical Institute. They briefly discuss an
international, multi-center Rituximab trial being proposed by the
Institute and its collaborators.

 

 

ME Newsletter 12/11 from Dr. Lapp

Contents

http://drlapp.com/news/me-letter-december-2011/

 

 

Information to Pass Along to Your "Interested Doctor":

 

Some of us are blessed with doctors who want to learn more but don't know where to get the info.

 

Chronic Fatigue Syndrome: From Diagnosis to Management

Drs. Cindy Bateman and Charles Lapp have authored a new educational course in association with the CFIDS Association of America. The highly-rated medical site, Medscape, released this course in October 2008, and is providing CME credits for physicians, nurses, and pharmacists. For more details or to take the course go to: http://www.medscape.com/viewprogram/17442

Educational Course for Healthcare Professionals

Dr. Lapp and Leonard Jason PhD have co-authored an educational course with the Center for Disease Control and Prevention and the CFIDS Association of America. Chronic Fatigue Syndrome: A Diagnostic & Management Challenge is available online as a 2-hour CME course designed to provide an overview of chronic fatigue syndrome. The goal of this course is to assist health care professionals in detecting, diagnosing, and managing this complicated disorder. http://www.cfids.org/treatcfs/default.asp

Note from Nancy:  The above is not new news as many of you may already know, but its good to remind you about this valuable information available from Dr. Lapp's web site.

 

Ampligen for Chronic Fatigue Syndrome: Trial Data Released

Wednesday March 21, 2012

Research Brief

A newly released study demonstrated that the drug Ampligen (rintatolimod) improved exercise tolerance and other symptoms of chronic fatigue syndrome (ME/CFS), and also lead to decreased use of other medications.  To read the article in its entirety:

http://chronicfatigue.about.com/b/2012/03/23/alternative-treatments-for-chronic-fatigue-syndrome-what-works.htm?nl=1

 

Personality & Physiology in Fibromyalgia: A New Discovery; By Adrienne Dellwo, About.com Guide   March 19, 2012

Research Brief

Fibromyalgia has long been tied to certain personality traits, both by the medical community and by some in the patient community. However, this observation has always been controversial, with many objecting that such stereotyping was erroneous and blamed non-physiological traits for a physiological illness.

Now, new research may resolve the controversy by tying both fibromyalgia AND a personality trait to a physiological root.

To read about this new research, go to:

http://chronicfatigue.about.com/b/2012/03/19/personality-physiology-in-fibromyalgia-a-new-discovery.htm?nl=1

 

Multi-tasking: A challenge for patients with CFS

Gudrun Lange, PhD
Pain and Fatigue Study Center, UMDNJ-New Jersey Medical School

   
As a researcher and a practicing clinical neuropsychologist my task is to assess cognitive function in CFS patients.  Once the test measures given are scored and the results interpreted, I provide feedback about my findings. Very often the findings are consistent with decreased information processing speed and poor working memory while overall intellectual function is usually intact.  These results are not uncommon in CFS and are supported by increasing research evidence (1,2).  During feedback sessions, I aim to explain the deficits found, but are frequently asked the question: “How do these findings relate to what I am experiencing in my daily life and what, if anything, can I do about it?” I will use this brief essay to begin to address these questions.  To read the rest of the article, go to:

http://www.iacfsme.org/BULLETINSPRING2009/Spring09LangeMultitaskingChallenge/tabid/366/Default.aspx

 

Understanding Fibromyalgia Pain

7 Types of Fibromyalgia Pain; By Adrienne Dellwo, About.com Guide; Updated May 10, 2011

You hear a lot about "fibromyalgia pain," but those of us with fibromyalgia (FMS) experience several kinds of pain.

Medically speaking, only a few of the fibromyalgia-pain types I talk about here have names and definitions. But just as Eskimos have several words for snow, I think we need to have several ways to name, define and categorize our pain. I've created some of my own categories, based on my experience and on conversations with other fibromites. My hope is that understanding the medical terms will help us communicate better with doctors, while my categories will help you understand your illness and let you know you're not alone.

NOTE from Nancy:  For those of you who are newly diagnosed, you may find this very informative information of real help to you in understanding your illness.  To continue reading, go to:

http://chronicfatigue.about.com/od/whatisfibromyalgia/a/fibromyalgiapain.htm

 

Rintatolimod, aka ampligen, on Trial

To read this article, go to:

http://www.research1st.com/2012/03/21/ampligen-on-trial/?utm_source=feedburner&utm_medium=email&utm_campaign=Feed%3A+Research1st+%28Research1st%29

 

 

 

What is Happening with the Research into ME and Rituximab?   By Anette Gilje


Secretary General, Norwegian ME Association

http://www.investinme.org/InfoCentre-Library-NMEA-Newsletter-1203.htm

The cancer doctors Řystein Fluge and Olav Mella, Haukeland University
Hospital, published their study on ME and rituximab last autumn.
Following their sensational and promising findings that some people
with ME had benefitted from the immune modulator rituximab, the
Government allocated two million Norwegian Kroners (approx. 220 000 Ł)
to the Western Norway Regional Health Authority to help funding a
larger follow-up study.

To read the rest of the article:

 

http://www.investinme.org/InfoCentre-Library-NMEA-Newsletter-1203.htm

 

 

Take the ME/CFS Social Security Disability/SSI Survey; by Cort (Johnson) on March 25, 2012

Getting Social Security Disability/Supplemental Income (SSD/SSI) can be a lifeline for financially beleaguered people with CFS (ME/CFS) but the application process is often lengthy and difficult.  Anecdotal reports from physicians and patients suggest getting disability may be more difficult for CFS patients yet documentation of success rates is lacking and little hard data exists on what works best in the disability process.

We’re attempting to rectify some of those problems in this online survey of people with ME/CFS who have applied for Social Security Disability and/or Supplemental Income Security (SSI). To continue on and to take the survey:

http://phoenixrising.me/archives/8913?utm_source=newsletter+subscribers&utm_campaign=c42e7f02fb-march_Newsletter3_26_2012&utm_medium=email

 

 

To read all of Cort Johnson's most recent articles:

 

http://us4.campaign-archive1.com/?u=6c3e0ee8a2bbf6bc1d8042f9b&id=c42e7f02fb&e=fd6ea09652

 

 

Dr. Oz and Pain Solutions

 

I didn't have time to check this out but I know that many folks really like what he has to say on many health topics, so here's one:

 

http://www.doctoroz.com/episode/best-solutions-pain

 


 

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 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