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Dear Fellow
Friends with ME/CFS and Fibromyalgia,
Our next meeting of our support group is Thursday, May 21st. We meet 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. The topic the 6th Session of this course is "Target Setting, Feelings/Loss/Depression/Worry, Relationships,: You can refer to the CFIDS and Fibromyalgia Self-Help Book and Web Site, which are the basis for this course at www.cfidsselfhelp.org . Upcoming Meetings: June 18 - Session 6, Target Setting, Feelings/Loss/Depression/Worry, Relationships
NOTE: The summer months, July 16th and August 20th, will not be regular support group meetings. Instead we will meet for lunch somewhere (for those who wish to participate). More information will be available later.
Topics in this Newsletter: - Breast Cancer Drive-Thru Petition - Fundraiser for Awareness Week/Month of May - Fibromyalgia Network E-newsletter - Cort Johnson's Report on CDC Meeting - Kim McCleary's Report on the CDC Meeting - Ryan Baldwin Update - Human Rights Issues - Sleep Studies - How Necessary - Chronic Pain News - Breast Cancer Site Click and.... “They Should Know!” - the ME-CFS Community Story Contest
***************IMPORTANT**************** Breast Cancer PetitionProtect Breast Cancer Patients from "Drive-Through" Mastectomieshttp://www.mylifetime.com/my-lifetime-commitment/breast-cancer/petition/breast-cancer-petition ********************************************************************************************************** Fund Raisers Through My Etsy Bead/Angel Sales Interestingly, when I focused on raising money for Neuropathy (one of my issues as well as dysphonia and ME/CFS/FM), I raised more money. What does that tell you? This has also been Neuropathy Awareness Week as Well and their Awareness Color is Purple just like Fibromyalgia." This is great because purple is one of my favorite colors - is it yours? Anyway, if anyone is so inclined. I am selling angels (earrings or pendants). I made sure some are more affordable than others. However, I donated a whole bunch to my church's yard sale fundraiser, so if you want something special, let me know. My shop is at GrannysGewelry.etsy.com. My goal is to send $50 to the Whittemore Institute since I am very impressed with how much they are doing in such a short time. If you want to donate directly to the Whittemore Institute, go to www.wpinstitute.org . I also plan to donate to Fibromyalga Network as well. NOTE: Since I just gave all my supply of angels to my church's yard sale except for one, I can make more, just drop me a line and tell me what color you want, and I'll get a special reserved listing for your item. I put affordable silver or goldtone chains on the pendants. I also have a few pairs of purple earrings. I need to get some blue ones on there as well. If I get any kind of response, I'd like to donate to the IACFSME organization that could use some funds for research as well as the CFIDS Association's Research Fund. From Fibromyalgia Network Throughout the month of May, awareness efforts are the key element that brings to light the suffering of millions of men, women, and children, and to educate the community and health care providers about the serious nature of fibromyalgia. Patient advocate Tom Hennessy, Jr., President of RESCIND, Inc. started the awareness day concept in 1992 to alert the world to fibromyalgia syndrome, chronic fatigue syndrome, Gulf War syndrome, and multiple chemical sensitivity syndrome. In 1988, the Fibromyalgia Network initiated a nationwide May 12 Awareness Day campaign to improve the public's recognition and understanding of fibromyalgia and other similar diseases. Today, the Fibromyalgia Network encourages awareness efforts year around. The awareness campaign is intended to make it easy on you to spread awareness while getting the public to think about how difficult it must be to live with fibromyalgia. Our purple wristbands, car magnets, decals, pins, and posters are subtle reminders that despite the invisible nature of your illness, “Fibromyalgia, It’s REAL.” Cort Johnson's Report on the CDC Meeting http://aboutmecfs.org/blog/?p=446#more-446
Kim McCleary's (CEO of CFIDS Assoc.) Report on the CDC Meeting http://www.cfids.org/cfidslink/2009/050607.asp?view=print
PLEASE NOTE: If you do not subscribe to CFIDSLink from the CFIDS Association, you are missing an opportunity to write your comments to the President for one. They provide grass roots opportunity to very easily write your congress people and others so that they can know about CFS and you can tell them about your experiences. You may be able to access them from www.cfids.org. If not, I can send you a copy of mine.
May Issue of CFIDSLink http://www.cfids.org/cfidslink/2009/040107.pdf
The Saga of Ryan Baldwin Continues
To read more
about this travesty,
http://parentsagainstmedicalabuse.com/
UK patient with
ME sectioned for "abnormal illness beliefs" ABUSE of HUMAN RIGHTS!
Fibromyalgia Awareness from Fibromyalgia Network http://www.fmnetnews.com/resources-awareness.php
Should You Have A Sleep Study Done? by Adrienne Dellwo of the About.com ME/CFS & Fibro site and message board.
http://chronicfatigue.about.com/b/2009/05/11/reasons-to-get-a-sleep-study-when-you-have-fibromyalgia-or-chronic-fatigue-syndrome.htm http://www.healthcentral.com/utils/newsweb/chronic-pain/news.html
Bringing the Heat: An ME/CFS Blog A wide-ranging, often rankly speculative and occasionally irreverent take on the world of chronic fatigue syndrome (ME/CFS) “They Should Know!” - the ME-CFS Community Story ContestME-CFS Community - my favorite new website - is sponsoring a contest that, I think, can make a difference. We patients don’t have much influence on the research or even (unfortunately) on governmental policies. We’re not simply strong enough as a community to strongly effect either of those things. But we’re very strong as individuals because we all have one thing that can reach out and grab someone by their throat: our stories. Our stories can make more of a difference than just about anything else. Politicians and bureacrats do not respond to statistics - they’re immersed in them all the time - but a good story- that really resonates. Good stories knaw away at people. They upset the status quo. They disturb their comfort level. They make the issue personal. No one should go into the darkness with their story left unsaid. This disease does too much for people to just go silently into the night. If anything else - people should tell - because people should know. Not enough of them know now. It’s possible that these stories won’t really be heard. But if we don’t tell them they will never be heard. If we do tell them at least we will know that there were told - that they’ve been put down. Yes, there are some nice cash prizes but I don’t think this ‘contest’ is a trivial exercise at all. I think it’s a shout of defiance against this disease and god knows what kinds of seeds these stories could plant if we get lucky. Go here to find out more about the contest. If you haven’t checked out the community - check it out; it’s definitely a different kind of place.
http://www.thebreastcancersite.com/tpc/ERB_051409_BCS
Spiritual Corner "I can do all things through Christ who strengthens me,"... Phil. 4:13
I am considering developing a HopeKeepers Group at my church. It would be a faith-based support group for those with any type of illness. We'd meet once a month for starters. I just want to get a feel for how many of you out there would be interested before I speak to my pastor.
Obviously this would be an outreach program for the Charlotte Disabled Community - particularly on the East Side/University Area of Charlotte at the United Wesleyan Church on Rocky River Rd. Just email me your thoughts and mention this to anyone you know with "any" chronic illness that might be interested.
I will be using the "So You Want to Start a Chronic Illness-Pain Ministry" written by Lisa J. Copen founder of "Rest Ministries" at www.restministries.org and www.invisibileillness.org . I'd love to kick this off by a visit from Dr. Nancy Waring who many of you know. I'm not sure when I could get started but hopefully in the fall. But this is just a brainstorm at this point. Also, helpers are encouraged.
Nancy Henson Patient/Advocate, Editor Charlotte ME/CFS/FM Support Group E-Newsletter |
