Hi Everyone,

Our next meeting is this week Thursday, November 18th, with Susan Chandler, a chiropractor who is very knowledgeable about nutritional issues.  So bring all your questions to what should be a very informative meeting.

As always, our meetings are at 7:00PM at Sharon Presbyterian Church ( 7-9PM), 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.  As you come into the building, go into the first door on your right. This is the Parlor of that building where we have our meetings.

For anyone who is new, our meetings generally wind down around 8:30pm so that we have time for refreshments and to talk with other members and/or the speaker for the evening. Remember no perfumes so as not to make those with MCS ill and no smoking anywhere on the church grounds. If during the meeting you feel you cannot sit and need to move about, please feel free to do so.

We know that with pain its impossible sometimes to sit with the increase in pain that comes from sitting too long. And feel free to bring your favorite pillow to be comfortable. Most of the chairs are folding and not always that comfortable. There are a few upholstered chairs and a couch.

So when you are getting uncomfortable, feel free to get a refreshment or to visit the information table or just walk around the room. The rest rooms are nearby - Kebbie, our leader, will address that during the intro time.

Since we all have memory issues, not only will I always send out a meeting reminder/newsletter a week before the meeting, but I'll send a simple meeting reminder the day before the meeting.  Hope this helps.

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NOTE:  Remember to go thru your calendar(s) to circle the 3rd Thursday of the month. We always have our meetings the 3rd Thursday of each month.

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Upcoming Meetings 

December 16th - Our annual Christmas Party (more details will be coming about that)

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From Cort Johnson - Re Grants for CFS Research

A Head-Splitter - Of all the problems at the NIH the makeup of the panel that reviews and scores ME/CFS grants - called the CFS SEP - may have been the most head-splittingly frustrating. No subject is guaranteed to raise blood pressure levels more quickly and perhaps, no other group has been more effective at throttling the life out of nascent CFS research efforts. For many researchers the CFS SEP was ground zero for what was wrong with the NIH.  Read on:

 http://forums.aboutmecfs.org/content.php?263-The-Stars-Begin-to-Align-at-the-NIH-A-CFS-Review-Panel-For-CFS

Treating ME/CFS and Fibromyalgia by Bruce Campbell, PhD and Charles Lapp, MD

The majority of patients with ME/CFS and Fibromyalgia are people who are moderately affected or are recovering from a more serious level of these disorders. While we wait for better diagnotic tools and treatments, here is a way to help ourselves.  This is in conjunction with treatment you are already on - there is much you can do to help yourself.

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A recent article via co-Cure:

Date:    Wed, 10 Nov 2010 09:13:41 -0800
From:    Bruce Campbell <bruce.campbell@FLASH.NET>
Subject: New Feature Article at Lapp-Campbell Site

Announcing a new featured success story and material on supplements and
experimental treatments on the Lapp-Campbell website: "Treating Chronic Fatigue
& Fibromyalgia" (www.treatcfsfm.org).

The article "Third Time is the Charm: How I Learned to Pace Myself" describes
how a CFS/ME patient from the UK learned to use pacing to gain stability, reduce
her symptoms and expand her activity level.

A discussion of supplements and experimental treatments has been added to the
Treating Symptoms section.

Explaining the new website, Dr. Lapp said, "What you'll find here is the combination of the Stepwise Approach I developed many years ago with Dr. Paul Cheney and the tools taught in Dr. Campbell's classes. This is the same integrated approach I now use with my patients. We have found that with encouragement, lifestyle changes, and targeted medications, more than 80% of people we treat can improve significantly."

Bruce Campbell, Ph.D., Executive Director
CFIDS & Fibromyalgia Self-Help Program
www.cfidsselfhelp.org

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Speaking as an almost "Type A" personality, I can look back over the past 26 years of coping with this and see where I've made serious mistakes in how I managed my illness.  Back in the 80s, we had nothing to help us so all we could do was go from doctor to doctor to find any snippet of help all the while fighting our way thru the naysayers and condescending doctors who would just send us off to manage our stress. 

Now that I'm in my 70s and reallyslowing down due to aging on top of chronic illness, the information in this course is invaluable. 

This program provides many ways to deal with a debilitating and chronic illness.  If you have never read Bruce Campbell's book, you can just review this course to see what its all about.  Then go back thru it a second time to see how the program works.  Then after a second review, you may be ready to do the program itself. Remember, there is nothing more important than taking care of yourself.

http://www.treatcfsfm.org/

Note:  Doctors like Cheney and Lapp do acknowledge that there are about 10% who are so severely ill that this type of program will not help. But it is still excellent information to read and be aware of. You just never know when you will turn that corner and be part of the majority.

Advocacy

Submitted by Polly Gilreath:

The Exit Project

For my friends suffering from ME/CFS:
 
This is an easy advocacy project which goes a step beyond letter writing but doesn't require leaving your house.  Send your picture/video to theexitproject@gmail.com.  There are only 2 rules:  you must be supine and an "X" must be visible in your picture.  Someone else will need to snap the picture obviously.
 
Here is the website to check out other entries:
 
www.theexitproject.org 
 
I'll be looking for you.  It's time to ACT OUT if we're ever to receive the funding we need.
 
Thanks for reading this.

http://www.theexitproject.org/

About.com ME/CFS and Fibromyalgia E-Newsletter by Adrienne Dellwo:

 Here's a list of the topics:

Overview of XMRV Research & CFS

Smoking and Fibromyalgia Symptoms

...and more

http://specials.about.com/service/newsletters/chronicfatigue/1288983600.htm 

Breaking Out! by Kelvin Lord; Published on October 28th, 2010

Read About Someone's Experience After Starting Ampligen

http://www.forums.aboutmecfs.org/content.php?253-Breaking-Out!-Ampligen-cfs-me-cfs-lapp-kelvin-lor

Health Central:  Chronic Pain Connection by Karen Richards

Topics include:

-- Restless Legs Syndrome Prevalent in Fibromyalgia

-- More Than One Million Fentanyl Patches Recalled

and more....

http://www.healthcentral.com/utils/newsweb/chronic-pain/news-sp.html

More from Core-Cure

Date:    Wed, 10 Nov 2010 14:18:26 -0600
From:    Tate Mitchell <tatemitchell@GMAIL.COM>
Subject: NOT: 'Seabiscuit' author Hillenbrand back with true tale 'Unbroken'

'Seabiscuit' author Hillenbrand back with true tale 'Unbroken'
By Deirdre Donahue, USA TODAY

http://www.usatoday.com/life/books/news/2010-11-10-hillenbrand10_CV_N.htm

WASHINGTON =97 Writer Laura Hillenbrand doesn't write about what she knows. She writes about what she can never have in this life.

"I write about people and animals in motion," says Hillenbrand, seated on a chair in the house she almost never leaves. Chronic fatigue syndrome (CFS), a mysterious and debilitating malady with a trivial-sounding name, has turned the 43-year-old into an unwilling recluse, a modern-day Emily Dickinson.

Nearly a decade ago, Hillenbrand became a publishing star with her first book, the forgotten story of a sweet-natured racehorse whose will to win =97 despite crooked legs, injuries and old age =97 gave hope to Americans during the Great Depression. Seabiscuit(2001) was an international best seller and a hit 2003 movie starring Tobey Maguire and Jeff Bridges.

On Tuesday, Hillenbrand returns with a second non-fiction title, Unbroken: A World War II Story of Survival, Resilience, and Redemption (Random House, $27). Amazon has already declared it one of the top 10
books of 2010, while Publishers Weekly's advance review called it "just as much a page-turner" as Seabiscuit.

It's the story of Louis Zamperini, an Olympic runner and World War II bombardier who survived 47 days on a raft adrift in the Pacific after his plane was shot down in 1943. Captured by the Japanese, he was savagely beaten and starved by his captors.

Tormented by post-traumatic stress disorder after the war, he survived, even triumphed. Now 93, Zamperini gives motivational speeches, flies a twin-engine plane and maneuvers the L.A. freeways in his car, day and night.

Writing about a thundering Thoroughbred and an Olympic athlete "lets me climb out of my body," Hillenbrand says. Though she describes in detail the B-24 plane Zamperini flew in during World War II, she herself has not been in the air in 20 years. The author of Seabiscuit cannot go to the racetrack. Researching these vigorous lives "is a liberation" in mind and spirit if not body.

No face-to-face meetings.

Her latest subject, who is helping to promote Unbroken, has never met Hillenbrand, even though she interviewed him about 75 times.

"That woman had not been out of the house two times in two years," Zamperini says by phone. "Her suffering made her able to relate to what I went through in prison. ... She puts her heart into her books."

They came close to meeting once in 2008. "I was in Washington on a speaking tour, but she wasn't feeling well that day," he says.

At the pretty yellow row house where Hillenbrand lives, quiet is the operative word. Her protective husband, Borden, a professor of political theory at American University, politely but firmly stops a visitor, asking that shoes be removed before entering because the city has been spreading rat poison.

This is the house of an invalid, though anyone looking at Hillenbrand's radiant author photo or hearing her on the radio or phone would never suspect it. She's charming and pretty in a long silky skirt, but because she seems to have so little energy, you believe her when she says, "sometimes it hurts to move my eyes."

Hillenbrand's illness first appeared on March 22, 1987, when she became nauseated and chilled on a car ride back from spring break in Maryland to Kenyon College with Borden and another friend. The Centers for Disease Control and Prevention recognized CFS in 1988 as an illness, but its cause remains unknown and there is no known cure. According to CFIDS Association president Kimberly McCleary, the condition afflicts an estimated 1 million Americans. (CFS is also known as chronic fatigue and immune dysfunction syndrome, or CFIDS.)

Hillenbrand can write on a computer but cannot read books because looking down exacerbates her vertigo. "Everything is moving," she says. "Even in my dreams. It's quite unbearable."

She conducts interviews by phone and by e-mail. Friends photocopy material from places like the National Archives. After a serious relapse in 2007, she did not leave the house for two years, when her husband drove her to a nearby Starbucks. She has never gone on book tour. She attended Seabiscuit's Washington film premiere in a wheelchair.

"I have an illness I cannot defeat, so I'm interested to see how other people have endured great hardship," she says.

Research led to Zamperini

Hillenbrand came across Zamperini's name while researching Seabiscuit. The two athletes shared the sports pages during the 1930s. At a time when elite runners were world celebrities, Zamperini, who lived in Torrance, Calif., was a schoolboy sensation, having set the national high school record for the mile in 1934. At 19, he made the 1936 U.S. Olympic team, the youngest distance runner to ever make the U.S. Olympic team.

Though he did not win the 5,000-meter race, he made headlines at the Berlin Olympics. First Hitler complimented him on his blistering last lap. Then Zamperini stole a Nazi flag from the Reich Chancellery and
was chased by guards.

Fascinated, Hillenbrand wrote down his name. "Right away, I knew I wanted to contact this guy."

In 2002 she did so. But Zamperini told her there was no point because he'd just finished his autobiography, Devil at My Heels, published in 2003. "I got everything. There is nothing left," he told her. "How wrong I was."

Zamperini's B-24 crashed into the Pacific Ocean on May 27, 1943. Only three of 11 men onboard survived. Sharks attacked their rubber raft while Japanese pilots strafed them. Zamperini, the bombardier, and his
pilot endured, but the third crewmember succumbed (after secretly eating all the emergency chocolate rations the first night). After a record 47 days adrift, the two emaciated airmen were found by Japanese
sailors and imprisoned.

Hillenbrand and Zamperini became friends over the phone. "She's so sweet, you can't resist giving her information," he says. Eventually, he sent her a lifetime of clippings, diaries, photos, letters and memorabilia going back to 1917. One scrapbook weighed 63 pounds.

Zamperini read Unbroken sitting in his Hollywood Hills apartment and compared it with his own autobiography. With Unbroken, he says, the writing was so vivid, the details so accurate, "I felt I was back in
prison. I'd have to stop and look away."

To Zamperini, Hillenbrand is a writer of genius: "And I just can't believe the research. She knew more about my life in prison than I did."

Unbroken does not skirt Zamperini's later difficulties. After the war, he became an alcoholic consumed by hate for a particularly savage Japanese guard, almost destroying his marriage to a gorgeous young
debutante. But after he attended a Billy Graham revival in 1949 at his wife's insistence, he stopped drinking, forgave his Japanese captors and devoted himself to motivational speaking, to rearing his daughter
and son, and to a camp he established for troubled boys.

Hillenbrand has had her own share of troubles. She went from being a college student suffering from apparent food poisoning to dropping out three weeks later. She visited doctor after doctor who assumed her
symptoms - profound exhaustion, weight loss - meant she was depressed or anorexic until an expert at Johns Hopkins diagnosed her with CFS.

Mad for horses since childhood, Hillenbrand in 1988 began writing articles about horse racing and equine medicine for magazines including Equus. She found inspiration for her first book when she saw a photograph of Seabiscuit's jockey, who was blind in one eye. Red Pollard's underdog back story and endurance in the face of physical pain exceeded even that of his horse.

Hillenbrand has never hidden her condition. In 2004, she won a National Magazine Award for a piece in The New Yorker called "A Sudden Illness."

"Laura is a champion for everyone who suffers from this illness," says McCleary, who has become a friend. In the USA, she says, "we don't have a lot of tolerance for chronic illnesses."

Parallel lives?

Because there is no diagnostic test for CFS, people tend to dismiss it as a non-disease. The name doesn't help. "It sounds how healthy people feel after the end of the week," McCleary says.

Perhaps there are parallels between Hillenbrand's and Zamperini's stories. Hillenbrand believes that the USA might not have won World War II if the country had not endured the Depression. Zamperini, she says, is "the quintessential child of the Depression. Tough, hardy, self-reliant, with a real can-do spirit."

And so a visitor has to wonder: Would Hillenbrand have been able to write Seabiscuit and Unbroken had she not gotten sick?

"I would never say 'thank God I got CFS,' " she replies carefully. But yes, "suffering can make you more compassionate," more able to imagine the pain of others.

In her life, Hillenbrand has no distractions =97 no children, no travel, no glamorous literary soirees to schedule. There is her husband, who has been by her side since 1987. "He's my whole life," she says.

And her writing. "My books are my way of speaking to the world."

Inspirational

There are other versions of this that have been around since at least 2007. But I had never seen it. I thought I'd share it with you - Meredith and Abbey:

http://inspirationalparenting.com/2010/07/12/meredith-and-abbey/

Nancy Henson, Editor