Charlotte CFS/ME/FM Support Group Newsletter

for May 14, 2012

 

 

Hi Everyone,

 

This month's meeting, this Thursday, May 17th at 7:PM.

We'll be viewing "Invisible" - a Film by Rik Carlson & Michael Thurston that was done by the Vermont state support group. We hope to have time for discussion as well. Maggie is going to be sure we have popcorn for our movie viewing pleasure. We usually have water or perhaps some other beverage. If you have something special you prefer, you might consider bring it.

 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.

 

 Upcoming Meetings (Subject to Change)

   June 21 -- George Piemonte , the Action Advocate, will discuss disability issues & answer your questions http://www.lawyer.com/george-piemonte.html .

  NOTE:  During the summer we have daytime luncheons instead of nightime meetings.

  July 19 -- Luncheon at Panera's, Carmel and Pineville-Matthews Roads

  August 16-- Luncheon at Panera's, Matthews 

NOTE:  Its that time again when we need to have another board meeting to discuss topics and speakers for our meetings. Its also a good time for new people who might want to get more involved with the support group to either offer their time in some way or come to a support group meeting to see how we administrate the group and learn how you might be able to help. You would not have voting rights of course, but anyone is welcome to come to attend a board meeting. The next board meeting will be noted in the next newsletter.

 

  Some of the Articles In this E-newsletter:

 - WPI Spring Newletter 2012 - MECFS & Fibro Awareness Day May 12th, 2012

- This is ME - Myalgic Encephalomyelitis (YouTube Video)

- Chronic Fatigue Syndrome Patients Had Reduced Activity in Brainís 'Reward Center'

- Pain Monitor - April 2012

- Additional Research Shows LDN Reduces Fibro Pain - April Issue of Fibromyalgia Network E-News

- Organization for Rearch & Advocacy for Neuroendocrineimmune Disorders & Advocacy

- The Assault on Chronic Pain in Fibro & ME/CFS-

- The Most Expensive Disorder Facing the Medical Profession-Clauw on FM & CFS

- The Cascading Effects of Disrupted Sleep:  Breaking the Chain

-- Humor Bits

 

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WPI Spring Newsletter 2012 

 ME/CFS & Fibro Awareness Day May 12th, 2012

We hope that you will join in and support WPI's May Awareness Month activities, particularly our health fair on May 12th, as we mark the twentieth anniversary of ME/CFS and Fibromyalgia Awareness Day.   We believe that neuro-immune diseases such as these should be recognized over the entire month of May with activities that help educate the public as to the impact of disease and the importance of research and clinical funding.  To read more of this newsletter:

  http://campaign.r20.constantcontact.com/render?llr=ufgsz5iab&v=0018H6J1k2lhMljfVhcToesx5I0CR-D1JRKdr9OzCH-PfG2V4tfetVlNS0RrzXJMpiczsdGlmJjHwMryOZ948he59O6CoLB1OCPk9_eNzjFklgNiL8eINUZ2A%3D%3D

 

Ottawa III: The Most Expensive Disorder Facing the Medical Profession Ė Clauw on FM and CFS   by Cort Johnson_ on December 27, 2011

Clauw is a fascinating figure. Clauw comes from the fibromyalgia side but if you donít have FM donít think thereís not something here for you as well. Clauw believes a very large group of people with chronic illnesses suffer from an undiagnosed and untreated FM/CFS-like illness and heís not alone. The creation of a high-level working group at the NIH composed of FM, IBS, interstitial cystitis, CFS and other researchers indicates considerable cross-fertilization is occurring between these formerly separate disciplines and this is good news. While Clauw is coming from the pain side you may be surprised at the connections you find.

To read on: http://phoenixrising.me/archives/6651

 

This is ME - Myalgic Encephalomyelitis

 ME is the more correct name for Chronic Fatigue Syndrome.  This is a good presentation for those who don't have a clue what we deal with and that some are so sick they have to be tube fed.  (note from Nancy)

  http://www.youtube.com/watch?v=ZgAa-l-N1Eg

 

 April 2012 Issue of the Pain Monitor Newsletter:

 In This Issue

http://www.painfoundation.org/learn/publications/pain-monitor/pain-monitor-201204.html

 

Science News

Chronic Fatigue Syndrome Patients Had Reduced Activity in Brainís 'Reward Center'

ScienceDaily (Apr. 24, 2012) ó Chronic fatigue syndrome, a medical disorder characterized by extreme and ongoing fatigue with no other diagnosed cause, remains poorly understood despite decades of scientific study. Although researchers estimate that more than 1 million Americans are affected by this condition, the cause for chronic fatigue syndrome, a definitive way to diagnose it, and even its very existence remain in question. In a new study, researchers have found differing brain responses in people with this condition compared to healthy controls, suggesting an association between a biologic functional response and chronic fatigue syndrome.

To read on:

http://www.sciencedaily.com/releases/2012/04/120424142109.htm

 

Additional Research Shows Low-Dose Naltrexone Reduces Fibromyalgia Pain

By Karen Lee Richards, Health Guide Thursday, March 08, 2012

In April 2009 I told you about a pilot study in which low-dose naltrexone (LDN) showed great promise as a fibromyalgia treatment.  In that study, all 10 of the participants reported a reduction in fibromyalgia symptoms, with 60% of them experiencing more than a 30% reduction in pain and fatigue.

More recently, Jarred Younger, PhD, of Stanford University School of Medicine, and colleagues (authors of the first study) presented their findings from a
second LDN study at the American Academy of Pain Medicine meeting. 

The investigators expanded on their original LDN research by conducting a placebo-controlled, double-blind, crossover trial of 30 women with fibromyalgia.  They found that half of the women reported feeling very much or much improved and an additional 25% said they felt minimally improved while taking the LDN.  The only side effects reported were vivid dreams (37%) and headache (16%). 

Note from Nancy:  This is known to help ME/CFS patients as well.

To read the rest of the article: 

http://www.healthcentral.com/chronic-pain/c/5949/151006/fibromyalgia

 

 Organizaton for Research & Advocacy for

Neuroendocrineimmune Disorders & Advocacy 

 http://p-a-n-d-o-r-a.org/

 

To read their latest newsletter:

http://campaign.r20.constantcontact.com/render?llr=f4utbb44&v=001YqL8bqhr7N4NSgUogKyUwUw5HA3l9VboCPQ5il2ThUIO0q37jezEATSN9Ejvez4qSLnyCQ93izJ2_opeQ4Tre0CMV90M8DLZDbuy7UdkSdWd24o9FxM7FbnyFJ3-2VHBoDzeGoL99imdDp5do265--9ewrg3hAGJzGZTo0kwpmb-ntaqtMKPUeBUqYvCdLqZ1TXLQqhubz_YeSFISZ4_vnnJDp5hOkuXT15rjmu3o77LCCuudoogF35TvyX_tt6m7sEm6XBjigdEsQaL9NJlyb304sdaTLHsIYzSjwIK8jbTwnlOR5yzYDvPpIH2D5Zt--9KiKfbaeo%3D

 

 The Assault on Chronic Pain in Fibromyalgia and ME/CFS - a Combined Approach

ProHealth.com
by Dr. Sarah Myhill, MD*
April 25, 2012

Dr. Sarah Myhill is a UK-based physician and clinical nutritionist with a special interest in the treatment of fatigue, chronic fatigue syndrome (ME/CFS), and fibromyalgia (DrMyhill.co.uk).

Normally, pain is accompanied by healing and repair, and this involves inflammation. But when things get complicated, as with autoimmune activity, fibromyalgia and ME/CFS, it is almost impossible to tease apart the threads of chronic pain, chronic fatigue and inflammation. And it is a combined approach that gets results. To read on:

http://www.prohealth.com/fibromyalgia/library/showArticle.cfm?libid=16939&B1=EM042512F&utm_source=EM042512F&utm_medium=em&utm_campaign=FM&slvor=10834.1062999.0.1.0.86766&eid=nmhenson@aol.com

 

 

Fibromyalgia Network E-News for April 2012

In this eNews:


http://www.fmnetnews.com/pages/enews/e-alert-april-2012.html

 

Dr. Lapp - CFIDS Assoc. Webinar May 2010

Discussing his Stepwise Approach to Coping with CFS & Fibromyalgia.  Excellent presentation.

 http://www.youtube.com/watch?v=sw5HcimeSOY&feature=related

 Note from Nancy:  This is perhaps old news but since not much changes except on the meds front for Fibro patients, you can't see this info often enough.

 

Low-Dose Naltrexone for Fibromyalgia Pain - Dr. Teitelbaum

New This Week: May 2, 2012

Good news from the 2012 annual meeting of the American Academy of Pain: A study from researchers at Stanford University School of Medicine showed that a low dose of the drug naltrexone significantly reduced pain in patients with fibromyalgia. The study confirms earlier, similar findings from the same researchers, published in Pain Medicine in 2009.

To read this and other articles in Dr. Teitelbaum's newsletter:

http://www.endfatigue.com/newsletters-2/nl_2012-05-02.html

 

ME/CFS HealthWatch May 2012 -
The Cascading Effects of Disrupted Sleep: Breaking the Chain

"Lack of sleep disrupts every physiologic function in the body," causing physical damage that can include escalating pain, and preventing the production of hormones key to vitality and immune health, nutrition pioneer Terry Lemerond explains.

He discusses the reasons different over-the-counter drugs don't break this relentless chain - and describes some natural compounds that sleep-deprived bodies may use to break free. read more Ľ http://www.prohealth.com/ME-CFS/library/showArticle.cfm?libid=16955&B1=EM050212C&utm_source=EM050212C&utm_medium=em&utm_campaign=MECFS

And to read other articles in this e-newsletter:

http://www.prohealth.com/em/EM050212C/index.cfm?slvor=10836.1063257.0.1.0.86766&eid=nmhenson@aol.com

  

 Pastor's Humor:

 Someone once said that grandchildren are God's reward to us for not killing our children when they were teenagers. 

 

This Week's Joke from Dr. Teitelbaum

Playing Gin

Four elderly ladies were sitting at a card table playing cards. One leaned over very close to another and quietly said, "I feel so embarrassed because I can't remember your name."

The other woman said, "How soon do you have to know?"

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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.  His other site, which is primarily director toward helping your doctors treat these disorders, is  http://www.cfstreatment.info/

 

- Our 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