ChronicPainConnection.comCharlotte CFS/ME/FM Support Group Newsletter
for September 4, 2009
Hi members,
This past month has been traumatic for me for various reasons but most of all the passing of my mother. I would never have thought it would have such a devastating effect on me but it has. This isn't new news to those of you who have also experienced this trauma. Anyway, life does go on.
Our next regular support group meeting will be September 17th with the topic being "Caregiving." This is always a very popular topic and we invite you to bring your caregiver or if you are too sick to come yourself, please encourage your caregiver to come anyway. As we get nearer to the 17th, I'll have more info on who will be facilitating other than Dr. Lapp. And if you have a friend with some other chronic illness, invite them or their caregiver.
Meetings in 2009
October 15th - Nutritionist
November 19th - Neuropsychologist Dr. Jeffrey Ewert
December 17th - Christmas Party with Chuck Lapp at the Piano and the enjoyment of an assortment of goodies.
Dr Lapp's Latest E-Newsletter for those who may not be on his distribution list:
http://www.drlapp.net/ME_letterAug09P.pdf
Chronic Pain SHARE AND SUPPORT - August 5, 2009
http://www.healthcentral.com/utils/newsweb/chronic-pain/news-sp.html
When it comes to its research into chronic fatigue syndrome (CFS or ME/CFS), the CDC takes a lot of heat. I have to say, in my opinion much of it is warranted -- endless studies on a history of abuse, woefully inadequate funding, and inclusion criteria that appear to leave the door open for people with primary psychiatric disorders have badly eroded the agency's credibility.
A recently published study really boggles the mind. The CDC did a population-based survey in Georgia to look at self-medication in people with ME/CFS as compared to healthy people. Hmm. Just by looking at the main symptoms, most of us could probably guess -- meds for flu symptoms, joint and muscle pain, sleep, digestive issues and allergies? Plus maybe some prescribed antidepressants? Bingo! To read on:
"10,000 for 10 Million"
UPDATE on National
Fibromyalgia Association Facebook campaign
ANAHEIM, Calif.
(August 14, 2009) -Just 10 days after the National Fibromyalgia Association (NFA)
launched its first social media campaign to get 10,000 Facebook "fans" by
October 1, thousands of Facebook users have signed up on the NFA's Facebook
page, bringing the total number of fans to
more than 8,000 as of August 14.
For the rest of the story, please visit:
http://www.fmaware.org/site/News2?page=NewsArticle&id=9107
http://www.fmaware.org/site/News2?page=NewsArticle&id=9107
http://www.fmaware.org/site/News2?page=NewsArticle&id=9107
http://www.fmaware.org/site/News2?page=NewsArticle&id=9107
Swine Flu and CFS - Question and Answers (from the IACFSME Assoc.)
http://iacfsme.org/Portals/0/pdf/Aug09%20Newsletter%20file%201%20SWINE%20FLU%20AND%20ME.pdf
A message to all
members of ME-CFSCommunity.com
with Fibromyalgia
A new group section,
designed specifically for those with Fibromyalgia,
has been established at the ME-CFSCommunity website. It can be accessed via the
Main page of the website.
For those of you who have this terrible affliction, I hope that you find this
initiative helpful. Please let us know what more we might do to be of further
assistance to you.
The group was developed at the suggestion of Camilla Lawson who will be its
moderator. The logo for the group was designed by our own Sebastián Chico.
Visit ME-CFSCommunity.com at:
http://cfsknowledgecenter.ning.com
Health Information, Tips, Community and More at HealthCentral.com
http://www.healthcentral.com/chronic-pain/c/5949/83438/fibromyalgia/pf/
http://www.oprah.com/article/omagazine/200909-omag-dr-oz-fibromyalgia
by Karen Lee Richards , Wednesday, August 19, 2009
The Men's Health Network, in collaboration with the American Pain Foundation and
the National Fibromyalgia Association, has launched an online survey to gauge
awareness, knowledge, and the willingness of men to take action when faced with
the signs and symptoms of fibromyalgia.
"This survey will help us understand what men know, or more importantly don't
know, about fibromyalgia, its symptoms, and a man's willingness to discuss any
pain, discomfort, fatigue and other signs of the condition with his physician.
Men are raised to believe that big boys don't cry. They are told to 'shake it
off' and to 'take it like a man.' Showing pain is showing weakness for many
men," says Scott Williams, Vice President of the Men's Health Network.
Because fibromyalgia affects many more women than men, too often men are left
out of the equation when it comes to FM research, diagnosis and support. For
every 10 people with FM, only one or two are men. I've long suspected that
there may be a larger percentage of men with FM than we think, but we're not
aware of them because men are often less likely to go to the doctor; and when
they do go, they're more reluctant to admit experiencing severe pain or
discomfort, making it difficult for healthcare providers to accurately diagnose
and treat fibromyalgia.
If you're a man who has or thinks he may have fibromyalgia or a woman with a
male loved one who has FM, please take this short survey. You don't have to
identify yourself and it will take you less than five minutes to complete.
Here's the link to take the survey:
Men and Fibromyalgia Survey
Thanks in advance to all who participate!
Fibromyalgia Network News for August 2009
Topics:
http://www.fmnetnews.com/pages/enews/Augus2009.html
ME/CFS Research
In an article by John Herd (which I'll be sending separately), he ends by stating
"I beg people to give till it hurts, for ME/CFS hurts a lot more."
There are many ways to support research. Some very influential people, wealthy people, and others have created research organizations all over the world. In this country we now have the Whittemore Institute as ell as the CFIDS Association.
I've recently set up another request from my Etsy shop "GrannysGewelry" www.grannysgewelry.etsy.com where I have been destashing most of my beads. Now I've begun "again" to use the sale of "affordable" jewelry to support various research projects. Occasionally I may purchase an item from a designer friend that won't be as affordable, but most pieces will have a good design quality but a low price.
Obviously, you can donate to ME/CFS research any way you prefer. But the Christmas season will soon be here and with more gift giving than at any other time, please consider buying jewelry. Any sale will be given to the research project of the month. September is the CFIDS Association (earmarked for research), October will be the Whittemore Institute, and so forth. I also like to support the ME Invest in the UK. The UK has several that are good and associated with such ME/CFS notables as Dr. Kerr.
As I learn more about where to send research dollars, I'll advise you. As John implied, its up to us... a dollar at a time. Watch for another email with his article or you can read it for yourself at :
http://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind0908e&L=co-cure&T=0&F=&S=&P=153
Disclaimer: This
fundraising effort is not the responsibility of the Charlotte ME/CFS/FM support
group. It is solely mine.
Nancy Henson
Editor, Charlotte Area ME/CFS/FM Support Group E-Newsletter