Charlotte CFS/ME/FM Support Group Newsletter

for April 21, 2010

 

Our speaker for May 20th meeting is Disability Attorney George Piamonte.

 

The meeting is at Sharon Presbyterian Church ( 7-9PM), 0.8 miles south of South Park Mall; Sharon Presbyterian Church is located 0.8 miles south of SouthPark Mall on Sharon Road.  Use the entrance closest to the mall.  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, go into the first door on your right. This is the Parlor of that building where we have our meetings.

 

Don't forget our May 6th board meeting - please consider volunteering a little to help our cause.    As you can imagine, we need lots of help in keeping this group afloat. If you have ANY interest at all in helping, please come to one of our board meetings so that you can see for yourself whether you can make that kind of commitment. 

 

One thing to be aware of is that you can help without making a huge commitment. Scheduling one speaker for the year would be an excellent way to help as a one-time-commitment. Also, we can always use back-ups for greeters and someone to make sure the sign-in sheet is gotten around for everyone to sign and to answer any questions attendees may have particularly if they are new.

 

Upcoming Meetings: 

 

- June 17-- Dr. Nancy Waring, PhD., a therapist who has CFS & Fibro will speak to us on coping with chronic illness 

 

- July and August Meetings will be luncheons and we will have more info on those later.

 

 

IMPORTANT NEWS - CFS Advisory Committee 

 

 Action You Can Take - Write to ensure that these meetings continue, that the WPI is invited (they haven't been so far), or the National Cancer Inst. Please read the following information from the link but you can write directly to cfsac@hhs.gov to request that the CFSAC charter be continued as well as ensuring that the WPI and NCI are invited. We only have a few days!

 

From:         Cort johnson Subject:      ACT: Taking Back the CFSAC

We saw the power of the Federal Advisory Committee on CFS (CFSAC) last
October when Annette Whittemore, Dr. Peterson, Dr. Coffin and others
presented live testimony on video on XMRV. The Committee is one of the
only places where federal officials can compelled to give public
testimony on the government's response to CFS. Simply as an information
source and a platform for action it's been invaluable.

But the CFSAC is in trouble...

Check it out in Taking Back the CFSAC - A' Bringing the Heat' Blog From Phoenix Rising

http://www.forums.aboutmecfs.org/blog.php?b=343

More about this situation:

 

 http://cfsuntied.com/blog1/2010/04/20/cfsac-meeting-damn-the-torpedoes/

One would expect the upcoming meeting to carry the momentum forward.  And yet…..there has been no invitation extended to the Whittemore Peterson Institute to participate in the upcoming CFSAC meeting. Nor has there been any request made to the National Cancer Institute for updates.

  

 'WPI Throws the Gauntlet Down'
http://blog.aboutmecfs.org/?p=1396

 

Latest Blog from Oslers Web Author Hillary Johnson 

http://www.oslersweb.com/blog.htm?post=690317

 

Chronic Pain Newsletters 

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

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

 

About.com Newsletter by Adrienne Delwo

http://specials.about.com/service/newsletters/chronicfatigue/1271444400.htm

 

 

Reaching Out Monthly Newsletter
April 2010 --- Volume 1, Issue 73
http://www.reaching-out.info