Hi All,

Our next meeting is Thursday, May 20th, 7:00PM - 9:00PM.  Our speaker for the May 20th meeting is Disability Attorney George Piamonte.

The meeting is at Sharon Presbyterian Church, 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.

Upcoming Meetings:

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

- - July 15   - Luncheon at Souper Salad, Independence Blvd at Windsor Square, Matthews, 1PM

- - August 19 - Lunch at Panera Bread , Carmel Village, corner of Carmel Road and Highway 51 (Pineville-Matthews Road) 1PM

Meeting topics for this fall will be announced as we obtain confirmation from speakers.

As always, I want to remind everyone who attends to be sure that you don't use perfumes or perfumed anything before coming to the meeting. It can be very toxic for some people. For those who may not be aware... MCS (Multiple Chemical Sensitivity) is a very serious illness that can be anywhere from mild to severe for some folks.

The CFIDS Association's 6th Annual Virtual Lobby Day is underway!

Four Action Alerts posted at http://www.capwiz.com/cfids/home/ reflect
the latest information about CFS, research, education and policy. The
federal CFS Advisory Committee met on May 10 and new alerts urge swift
enactment of the recommendations made by the committee. Outreach is
directed to Congress, the Executive Branch (President Obama, VP Biden,
Secretary of Health Sebelius, Assistant Secretary of Health Koh, and top
officials at health agencies) and your local media.

Please take action now by completing the four easy-to-use message
templates. Let your voice be heard!

The CFIDS Association of America

Working to make CFS widely understood, diagnosable, curable and preventable
(via CFIDSLink)

May 12th Awareness Video

Members of the ME/CFS community put together a music video to raise awareness about
the disease.  Cinder Bridge contributed the song.  The ME/CFS Phoenix
Rising Video is available on YouTube:

http://tinyurl.com/mecfsprv

CFSAC Meeting - (CFS Advisory Committee)

http://www.prohealth.com/ME-CFS/library/showArticle.cfm?libid=15334&B1=EM051210B&slvor=10072.1003561.0.1.0.86766&eid=nmhenson@aol.com

Watch YouTube Videos of CFSAC Meeting Thanks to CFSAC Video Project - May 10, 2010

The CFSAC Video Project has already posted the majority of the May 10 CFSAC meeting on YouTube (in 24 segments) at www.youtube.com/view_play_list?p=131A8EEA7ECD72CD. For this wonderful, fast reporting, we thank and applaud spokesperson Khaly Castle and members of the Barborka Family, CFSKnowledgeCenter, CFSUntied, Diagnose Support, Teejkay, and P.A.N.D.O.R.A. Inc. The Project also plans to offer transcripts, copies of written testimonies, and any available pictures.

Meanwhile, the NIH.gov website will as usual post its own videos of the event within a few days - http://videocast.nih.gov/. And the WPI has posted the 3-minute testimony of Founder Annette Whittemore.

Background on the May 10 CFSAC Meeting in Washington, DC

The CFS Advisory Committee provides advice and recommendations to the Secretary of the US Dept. of Health & Human Services on issues related to ME/CFS. This is done through public meetings held in Washington, DC roughly twice a year, with Dr. Wanda K Jones, PhD, Principal Deputy Asst. Secretary for Health, currently presiding. At these meetings, CFSAC members present reports, issues are discussed, and patients & advocates make brief public statements by pre-arrangement.

Committee Members

For info on the Committee members and "Ex Officio" members representing the CDC, FDA, HRSA, NIH, and SSA, go to the CFSAC website - http://www.hhs.gov/advcomcfs/roster/index.html

You Can Read Much of the Written Testimony Online

The scripts of many of the public testimonials are online at the CFSAC website - www.hhs.gov/advcomcfs/meetings/presentations/05102010.html

The Meeting Agenda/Presentation Times

A broad agenda of the meeting with times of recommendations, comments & discussion is posted at www.hhs.gov/advcomcfs/meetings/agendas/cfsac20100510_agenda.html 

Streamed Live, Archived for Public Viewing

The meetings are streamed live online via the NIH VideoCasting Center at http://videocast.nih.gov/. The government tracks number of viewers to determine whether "interest" justifies the expense of videocasting. Videos of the CFSAC webcasts are offered online on the NIH.gov website within several days after the event - http://videocast.nih.gov/ (look in "archives").

Software Needed for Streaming Video Viewing

To find out if you have the needed software, or download what you need free, go to http://videocast.nih.gov/faq/#software

CFIDSLINK - The CFIDS Assocation of America E-Newsletter

http://www.cfids.org/archives/2006-2010-cfidslink/may-2010.asp

Hillary Johnson's Comments on the CFSAC Meeting (she's the author of Osler's Web)    http://www.oslersweb.com/blog.htm?post=700212

Cort Johnson's Comments on the CFSAC Meeting

http://blog.aboutmecfs.org/?p=1540

Help to Pay for Meds

This is from the Medicare newsletter you may want to subscribe to:

http://www.medicarerights.org/issues-actions/medicare-watch.php

 Two of the programs you might consider are:

1.   State Pharmaceutical Assistance Programs (SPAPs)

2.   Patient Assistance Programs

Visit www.medicareinteractive.org to learn more.

Health Central - Pain Connection - http://www.healthcentral.com/utils/newsweb/chronic-pain/news.html

Check this out if you haven't already:  

www.ME-CFSKnowledgeCenter.com.

Results of Head Upright Tilt Table Test as a Predictor of Disability in a Group of Chronic Fatigue Syndrome Patients, Susan M. Levine^1*, MD

http://www.iacfsme.org/BULLETINSPRING2010/Spring2010ABSTRACTLevine/tabid/430/Default.aspx

HealthCentral: ChronicPainConnection

Be sure to subscribe to this newsletter

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

Laughter Instead of Exercise for Fibromyalgia & Chronic Fatigue Syndrome?

 http://chronicfatigue.about.com/b/2010/05/03/laughter-instead-of-exercise-for-fibromyalgia-chronic-fatigue-syndrome.htm?nl=1

Nancy Henson, Editor