Charlotte CFS/ME/FM Support Group Newsletter

for September 19, 2013

 

Hi everyone,

This month's meeting is this Thursday, September 19, with our very own Dr. Charles Lapp discussing common cognitive difficulties seen in CFS/ME and FM, then discuss some new approaches toward dealing with these issues.  There are some new products on the market now that might be helpful to some of our members.   After that discussion he'll  open up for Q&A

 

Upcoming Meetings/Luncheons:

October 17 - TBA

November 21 - Chrys Kub, Physical Therapist/Yoga Instructor

December 19 - Annual Christmas Party

 

January - Planning Meeting of the Board Members- And, if you think  you might like to volunteer and help with our group, please come to this meeting. We always need help.  Therefore, there will be NO REGULAR MEETING in January.

NOTE:  Dr. Nancy Waring was scheduled for October but due to health issues (she has CFS & Fibro also), she's rescheduled for spring.

 

 

From Co-Cure

 

Date:    Thu, 12 Sep 2013 18:39:41 -0500
From:    Tate Mitchell <tatemitchell@gmail.com>
Subject: NOT,ACT: Save The Date: Fall 2013 CFSAC Meeting

Note: It appears that the information provided by the DHHS on the
'FedBizOpps.gov' website regarding the IOM contract being cancelled
was lying and just a ruse to quiet down the patient population. As the
remarkable piece of disregard for the ME/CFS patient population below
states,  "The Chronic Fatigue Syndrome Advisory Committee (CFSAC) will
hold its fall meeting as a webinar on November 12 and 13, 2013, from
12:00 noon – 5:00 pm ET each day. This will not be an in-person
meeting...We continue to work on a contract with the Institute of
Medicine (IOM) to develop recommendations for clinical diagnostic
criteria. When the contract is finalized, we will provide additional
information via the CFSAC listserv and website. This topic will be
included as an agenda item for the November webinar".

So for perhaps one of the most important issues + meetings for ME/CFS
patients in the past decade it's basically a big F.U. from Uncle Sam.

-------------------------------------------------

Save The Date: Fall 2013 CFSAC Meeting

The Chronic Fatigue Syndrome Advisory Committee (CFSAC) will hold its
fall meeting as a webinar on November 12 and 13, 2013, from 12:00 noon
– 5:00 pm ET each day. This will not be an in-person meeting. Because
of budget constraints and the government-wide Sequestration, federal
advisory committees have been told to conduct at least some of their
meetings as webinars or use other similar formats.

We will use webinar technology to accept questions to the committee
submitted in real time, similar to the questions received on note
cards from the last meeting. For the first time, we will accept
prerecorded videos as public comment for the fall 2013 meeting. As in
the past, we will have “live” public comment via phone and will accept
written public comments. Detailed instructions for joining the webinar
and providing public comment will be posted on the CFSAC website
www.hhs.gov/advcomcfs/ at a later date. Agenda items will be posted on
the CFSAC website by October 28.

The 2014 CFSAC spring meeting will be in-person in Washington, DC;
exact dates will be announced in 2014.

We continue to work on a contract with the Institute of Medicine (IOM)
to develop recommendations for clinical diagnostic criteria. When the
contract is finalized, we will provide additional information via the
CFSAC listserv and website. This topic will be included as an agenda
item for the November webinar.

If you have any questions, please email cfsac@hhs.gov.

Thank you,

________________________________________________________

The CFSAC Support Team
http://www.hhs.gov/advcomcfs/index.html

Sign up for the CFSAC listserv to receive the latest updates about CFSAC:
http://www.hhs.gov/advcomcfs/cfsac_email_list.html

 

 

NOTE:  "Cort Johnson", is changing its name to "Health Rising by Cort Johnson" on September 26

 

 

 

Move over Lyrica and Cymbalta? Could Topamax (Topiramate) Be More Effective in Fibromyalgia?

 

 

This article is another from Cort Johnson's Health Rising Blog:

Getting three drugs approved for Fibromyalgia has been great, but there can a dark side to drug approval; namely, a FM drug ghetto that develops when overworked doctors ignore other possibilities.

In a reminder to keep your options open, check out a case study of woman with Fibromylagia who, after being immune to the effects of the 'big three' and other drugs, had a spectacular response to a little-used drug in FIM/ME/CFS in... (To read the article in its entirety, go to:

http://www.cortjohnson.org/blog/2013/09/14/move-lyrica-cymbalta-topamax-topiramate-more-effective-fibromyalgia/

 

CDC Whiffs on Opportunity to Prove Reduced Exercise Capacity Present in Major ME/CFS Study

Note: This article is from Cort Johnson's Health Rising Blog

In July, eleven ME/CFS groups and thirty-one advocates requested the CDC use the two-exercise protocol in phase two of their multi-site study. Their letter stated:

The two-day CPET regimen known as the Stevens Protocol provides gas exchange and other objective and measurable results “which can’t be faked.” …Having CPET testing performed by trained personnel on subjects involved in the multi-site clinical assessment should be considered a TOP PRIORITY…

We cannot over-emphasize the importance of measuring and understanding post-exertional malaise (PEM) in this study. PEM is most often the largest obstacle to activities of daily living, gainful employment, exercise, and more.

During the CDC Conference Call on Tuesday, Sept 10, Dr. Unger nixed any chance of meaningfully measuring exercise capacity in this study by her decision to do the 1-day exercise test.  A brief look at the results from latest two-day ME/CFS exercise study will illuminate what was lost.  To read this article in its entirety, go to:

http://www.cortjohnson.org/blog/2013/09/15/cdc-whiffs-opportunity-prove-reduced-exercise-capacity-in-chronic-fatigue-syndrome/

 

Our Support Group Leader and Board Members:

-  Kebbie Cannon is our Support Group Leader (704) 843-1193 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.

- Treatment - Another site, which is primarily directed toward helping your doctors treat these disorders, is: http://www.cfstreatment.info/

- Treasurer is 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

- Visit our web site at www.CharlotteCFS.org