Hi Everyone,

This will be short but I wanted to get it out to you before I forget (I do that more and more these days). And for the details about our summer schedule and lunches, check at the bottom of this newsletter.

Given how the world of ME/CFS is changing of late, I wanted to share this particular presentation with you. Some or many of you may not have read much about the Whittemore Institute for Neuro-Immune Diseases. Many of us have been following the progress since we viewed the videotape last year about the research being undertaken.  Most recently, Cort Johnson, Owner and Editor of Phoenix Rising wrote an article about the Whittemore Institute ( http://aboutmecfs.org/Conf/IACFSME09WPI.aspx ).  Within Cort's article are some excellent quotes from the head researcher that you may find interesting.  Again, I am addressing those who may have not followed this new research that includes ME/CFS, which Mrs. Whittemore's daughter has had for 20 years.

Mrs. Whittemore, who was instrumental in getting this Institute off the ground, recently gave a presentation about its status.  This particular page really caught my attention as a tool to give to someone with ME/CFS who doesn't have the cognitive ability to read much ( which is common with ME/CFS). The CDC has not really tried to help us. That's a fact we've all known for a very long time. So if there is to be research to really help us, it has to come from outside a government agency. Perhaps a government agency will fund some work however.

This is some information that really shows the enormity of the injustice :

http://www.nnfcn.org/Calendar_files/Whittemore%20Peterson%20Institute.pdf

Page  15

- One in 300 US citizens suffer from ME/CFS

- One in 750 suffers from MS

- One in 158 boys is autistic

- One in 150 suffer from fibromyalgia

- Neuroimmune diseases are on the rise

Note from Nancy:  I wonder if the fact that most people with ME/CFS have fibromyalgia is considered in these numbers. But more importantly, it is a fact that people diagnosed with fibromyalgia also have ME/CFS but have been diagnosed only with Fibro.

Page 44

Inadequate NIH Research Funding ( This is just one comparison to make a point - there wasn't a way I could easily show this side by side but you'll get the point)

- ME/CFS

    - 2006 - $5 million

    - 2008 - $4 million

    - Affects one in 300

    - Often causes substantial disability

    - Impacts the immune system and the brain

    - Has no FDA approved treatments or diagnostic tests

- Interstitial Cystitis

    - 2006 - $25 million

    - 2--8 23 million

    - Affects one in 1000

    - Has several FDA approved treatments

    - Has diagnostic tests

    - Causes bladder pain

Fibromyalgia Aware

The latest FMAWare magazine is available for purchase where magazines are sold. You can also subscribe.

Here is a link to the latest FMAware E-Newsletter:

http://www.fmaware.org/site/PageServer?pagename=TEMPLATE_vol19nonsubscribers

Fibromyalgia Network

This site offers a wealth of information about Fibromyalgia. In fact, much of the research it funds is relative to both FM and CFS. Link to see some examples of free articles:

http://www.fmnetnews.com/articles-overview.php

If you get a membership, you will receive additional benefits. They offer a state listing of Fibro doctors and support groups for one thing. Their quarterly newsletter and the hand-out brochure is excellent - we generally keep these stocked for our meetings for those newly diagnosed with Fibro.

May's CFS Advisory Committee Meeting:  For those of you who haven't yet read any of the testimony presented at the CFSAC meeting.

http://cfsknowledgecenter.ning.com/profiles/blogs/testimony-to-cfsac-meeting-may

Remember to Add This to Your Favorite Places or Sign up For Daily Reminder

http://www.thebreastcancersite.com/tpc/ERB_062209_BCS

While you're there, click on all the other sites where a click means help for some very worthy cause. You can choose your worthy cause.

No Regular Meetings in July and August

Don't forget that in July and August, there will be no regular meetings. There will be a lunch gathering for those interested at Earthfare in Pineville July 16th and Panera Bread August 20th in Matthews.

July 16, Thursday - 1:30PM:                         

                        Earthfare,

                        12235 N Community House Rd, Charlotte, NC - (704) 926-1201

                        (The address is Charlotte but it is in the Pineville Area). 

                        Check Mapquest for more specific directions & a map)
  

August 20, Thursday - 1:30 PM;

                        Panara Bread,

                        1834 Matthews Township Pkwy
                        Matthews, NC 28105
                        704-846-4003

                        (Check Mapquest for more specific directions and a map)

                        (It is in the same mall with Target)

                        (On right not to far from the hospital towards

                        (the Independence/Rt. 51 Interchange

Folks I'm off for a vacation - a trip to upstate NY that is where we call "home" away from home... where we grew up, went to school, and raised our family. Didn't get to travel last year due to Harvey's cancer surgery and chemo treatments. He recently got more good news that a recent CTScan revealed no new cancer. Upon return from NY, we celebrate our 50th wedding anniversary. Have a great summer.

You can contact our support group leader Kebbie Cannon at 704-843-1193 or kebbie1@windstream.net .  And

Check out  our support group's web site at www.CharlotteCFS.org . and Dr. Lapp's web site at www.drlapp.net .
 

Nancy Henson, E-Newsletter Editor

Charlotte Area ME/CFS and Fibromyalgia Support Group