Charlotte CFS/ME/FM Support Group Newsletter

for January 17, 2013

 

Dear Friends,

The last few months have provided two exceptional meetings for our support group. November's meeting, with Dr. Lloyd Bridges, Pinelake Family Practice, Matthews, was very exciting indeed.  And then the Christmas Party, which I unfortunately missed, had an excellent turnout despite the horrible rainy conditions. 

Our next meeting, coming up January 17th, will be a planning meeting for the Administrative Board to work on speakers for the coming year. Anyone interested in attending is welcome especially anyone interested in volunteering to help out.  We can never have too many volunteers.

Importance Notice:  My personal geek squad (my son) will be switching me from AOL to Gmail.  So should something go awry with my distribution mechanism please be sure to  keep a copy of this newsletter, enter these items on your calendar, or have a friend remind you. I've been on AOL and using their excellent system for distributing large numbers of emails, I'm not sure what to expect with Gmail except that its "supposed" to work just fine. You can always either check the website at www.charlottecfs.org or contact any member of the board as listed at the bottom of this newsletter.

 

Upcoming Meetings

February 21 Meeting - Open Discussion

March 21 Meeting - Myra Preston - Go to http://www.siberimaging.com/about.html to learn more about Myra.

Meeting Location Directions:  As always, our meetings start at 7:00 PM and wind up around 8:30-9:00 PM at Sharon Presbyterian Church, located 0.8 miles south of SouthPark Mall on Sharon Road. Use the entrance closest to the mall if you can. There is a second entrance but you'll have to weave around in order to find the parking lot to the left of the sanctuary building (left as you would be facing the building).

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 you should see a sign for the meeting, then after you get inside - go into the first door on your right - the Parlor - where our group meets.

Remember no perfumes so as not to make those with MCS ill and no smoking anywhere on the church grounds.

And if you need further directions, you can call me at 704-563-0657 or email any of the member of our board as listed at the bottom of this newsletter.

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Fibromyalgia Network December E-News

http://www.fmnetnews.com/pages/enews/eNewsAlert-12-12.html

 

Cort Johnson Leaves Phoenix Rising

If you've never heard of Cort Johnson, then you've not been able to read my newsletter. Nonetheless, Cort created Phoenix Rising many years ago. His claim to fame is that he's a patient who is well enough to write and write well he does. He writes on complex matters so that "we" his counterparts with less cognitive function could understand easily. Check out his new web site to see what I mean. This link takes you to his new site where he's going over the high points in 2012 and you may well read about things you hadn't heard about. I did.

http://www.cortjohnson.org/

Final Options for Treating Chronic Pain

By Christina Lasich, MD, Health ProMonday, December 31, 2012

What’s next? If this question is on your mind, you have likely seen many doctors, tried many different drugs, maybe had a surgery or two, or are just at your wits end. Before you let despair and helplessness answer your question about what life will offer next, look at some of these final options for treating chronic pain. When you are reading through the options, ask some other questions pertaining to reversibility, probability, and accessibility. The answers will help you to decide which option is right for you.

To read on: http://www.healthcentral.com/chronic-pain/c/240381/158158/treating/?ic=6042

 

National Fibromyalgia & Chronic Pain Association

 

January 11, 2013

Dear Friends,

Here is your chance to participate in a new online fibromyalgia scientific study on mindfulness and fibromyalgia being conducted by the fibromyalgia research team at the Oregon Health & Science University (OHSU). This group has been involved in fibromyalgia (FM) research since the 1980s and has produced a large compilation of important scientific studies focused on growth hormone depletion in FM and the importance of exercise in successful FM treatment programs.

Your participation entails filling out a short survey. Please click on the following link to learn more about this opportunity and how to participate.

Click here for more information

Sincerely,

NFMCPA Staff and Volunteers

 

 

Ambien dosage lowered for women

The FDA ordered the makers of Ambien and other sleeping medications to lower the dosage of the drugs for women, citing new evidence that show the drugs can stay in the bloodstream long enough and at high enough levels to make it difficult to drive or concentrate the following morning. Compounding the problem: women metabolize sleeping pills differently than men. NBC’s Tom Costello reports.

http://www.msnbc.msn.com/id/3032619/vp/50427041#50427041=

 

NOTE from Nancy: I was originally prescribed 10mg of Ambien for severe insomnia. But over the years with the addition of other medications that have the side effect of drowsiness, I lowered the amount I take to 5mg. I just hope when they did this study that they took into account that a person must take the pill just as they are going to bed and are ready to sleep. And they must take into account whether or not the person has actually had 8 hours of sleep before they drove to work. It doesn't say that in the report one way or the other.

 

 

2013 Drug Outlook for Fibromyalgia & Chronic Fatigue Syndrome

By Adrienne Dellwo, About.com Guide, January 11, 2013

Will we see new drugs for either fibromyalgia (FMS) and chronic fatigue syndrome (ME/CFS) in 2013? It's possible we'll see the first-ever drug approved for ME/CFS, as well as an off-label treatment for both conditions. To continue reading this article, go to:

http://chronicfatigue.about.com/b/2013/01/11/2013-drug-outlook-for-fibromyalgia-chronic-fatigue-syndrome.htm?nl=1

 

Also:

MSG in Food may Worsen FMS Symptoms

See what research says about this common food additive.

http://chronicfatigue.about.com/b/2013/01/10/msg-in-food-may-worsen-fibromyalgia-symptoms.htm?nl=1

and another from Adrienne Dellwo at About.com:

Fibromyalgia Underdiagnosed in Men, Symptoms May be Different

http://chronicfatigue.about.com/b/2013/01/08/fibromyalgia-underdiagnosed-in-men-symptoms-may-be-different.htm

 

Nutrients to Combat the Modern Stress Epidemic (ProHealth.com)

By Jeffrey Castle*

Be it work, finances, relationships, or health issues, most of us experience stressful events at some point in our lives. But today, researchers are witnessing levels of stress that are virtually unprecedented.

A startling 80% of Americans now report experiencing intense, chronic stress over personal finances and the economy.
(1) And the problem is global: the World Health Organization estimates that stress-related disorders affect nearly 450 million individuals worldwide.(2)

The effects of this pandemic on the public health are profound.

Researchers have linked the cumulative impact of stress to a host of age-accelerating conditions and degenerative diseases.
(3)

These range from cardiovascular disease to diabetes to various cancers.


To read morehttp://www.prohealth.com/library/showarticle.cfm?libid=17776

 

 

Subject: NOT: ME/CFS Alert Episode 38 w/ John Chia

Date: Sat, 22 Dec 2012 13:19:48 -0600
From: Tate Mitchell <tatemitchell@gmail.com>

http://www.youtube.com/watch?v=NhU-G0loqtY

This runs 12 minutes and is Part 1 of a talk with John Chia.
ME/CFS Alert Episode 38 with Dr. John Chia Infectious Disease Specialist

 

FDA Panel Considers 1st Drug for Chronic Fatigue Syndrome

THURSDAY, Dec. 20 (HealthDay News) -- A U.S. Food and Drug Administration advisory committee will meet Thursday to consider approval of the first drug to treat chronic fatigue syndrome.  To read the article on this, go to:

http://health.usnews.com/health-news/news/articles/2012/12/20/fda-panel-considers-1st-drug-for-chronic-fatigue-syndrome

 

Subject: Cancer Medicine gives ME/CFS sufferers hope!

Date: Thu, 20 Dec 2012 05:19:04 -0600
From: Tate Mitchell <tatemitchell@gmail.com>

Note: A writeup of the recent ME/CFS research conference which took
place on Sept. 11, 2012 and which was set up by Swedish patient group
RME in the Swedish magazine 1.6 Miljonerklubben, aka 1.6 Million Club.

For more info on conference plus links to conference videos-
https://listserv.nodak.edu/cgi-bin/wa.exe?A2=CO-CURE;919c41c3.1210A

http://rme.nu/sites/rme.nu/files/1_6_miljoners_nr4_2012.pdf

1.6 Miljonerklubben Nov. 4, 2012


Joy Notification by Professor Olav Mella:

Cancer medicine Rituximab, according to a Norwegian study published in
2011, led to improvements in two of three patients with the neuro-immune disease ME/CFS (chronic fatigue syndrome).

Now a follow-up study that the effect is also considerably more prolonged than had previously been seen. This statement gave joy Olav Mella, a professor at Haukeland University Hospital in Bergen and one of the researchers behind Rituximab studies, in a speech at a well-attended ME/CFS conference in Stockholm early last fall. The results of the current study is unpublished, but the preliminary findings are clear, according Mella. Has already been seen that drug Rituximab helps with ME/CFS, in isolated cases, a dramatic improvement has been observed. Now we can see that the preparation has benefits
for the long term. However, he is still secretive about the details of the current study, expected to be published during the first half of 2013.

28 ME/CFS sufferers treated with Rituximab in the ongoing follow-up study. They get six infusions over a 15-month period, compared with the old, placebo-controlled study, in which two infusions were given for 14 days, and patients were then observed for one year. The
previous study, published in the prestigious scientific journal PLoS One, 2011, gained international attention and gave ME/CFS sufferers worldwide hope for a future effective treatment for the disease.

To continue reading this article:

https://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind1212C&L=co-cure&F=&S=&P=21777


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Our Support Group Leader and Board Members:

 

- Our Support Group Leader is Kebbie Cannon at kebbie1@windstream.net or Asst. Support Group Leader, Maggie Reed at Maggie_Reed@comporium.net

 

- Medical Advisor Dr. Charles Lapp, Hunter Hopkins Clinic in Charlotte. You can visit Dr. Lapp's Web Sites at www.drlapp.com where there is ample info about his clinic and making an appointment if you need. Another site, which is primarily directed toward helping your doctors treat these disorders, is: http://www.cfstreatment.info/

Also, there is the site primarily directed toward helping your primary care doctors or any other doctors who need to know this information that treat you on a regular basis. It is http://www.cfstreatment.info/

 

- Treasurer is Leslie Vann at llvann@usa.net

- Newsletter Editor is Nancy Henson at nmhenson@aol.com

- Visit our web site at www.CharlotteCFS.org