Charlotte CFS/ME/FM Support Group Newsletter

for January 13, 2014

 

Hello from Not Normally Frigid North Carolina

This month's board meeting has been postponed due to obvious reasons.  I'll send out a notice with any new info.

Remember:  You don't have to be a member of the board to come to a board meeting if you are truly interested in helping in some way either with opinions or perhaps volunteering in some way.  And volunteering can be of short duration like helping with refreshments one meeting or by commiting to arrive early to help set up for a meeting (chairs, meeting supply trunk, refreshments, etc.)

We need all the help we can get -- due to health reasons, our Maggie is no longer able to attend meetings nor serve on the board so we desperately need at least one person who might be able to commit to help. We'd even APPRECIATE two people who can alternate.

Note from Nancy:  Due to the intense nature of some of this information, I hope you understand that I pick these articles for the most people that I think "might" find it interesting or helpful.  I may miss the mark at times but "I try."

 

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Upcoming Meetings

February 20th - TBA

March 20th - Dr. Nancy Waring, Has ME/CFS/FM - Is a psychotherapist who primarily helps those with chronic illness.

 

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Article Topics in This Newsletter

** "America tonight" Runs story about ME/CFS

** Canary Singing

** Cort John's Health Rising is Aim of ProHealth Campaign

**  My Fibromyalgia Healing Journey - A 3-Pronged Approach

** The Lipkin Study, the Vagus Nerve Infection Hypothesis and HHV-6:  Kristin Loomis of the HHV-6 foundation Talks -- Part 1

** Moving Targets:  Fibromyalgia and CFS Over Time

 

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Take Advantage of www.LynnBishop.net Disability Attorney Web Site

 

Lynn Bishop has spoken to our group to help those who are beginning the application for benefits process, have been denied several times, and/or have concerns in the area of Employer short term and long term disability rather than the more common social security disability.

 

You can subscribe to the "Social Security Newsletter" by going to her web site.  For example, if you go to www.lynnbishop.net and click on Resources, then scroll down a bit, you'll see an article entitled "So Just What is Social Security?"  If you want to receive a copy of these newsletters, you can subscribe from her site. If not, just check her site monthly for the latest.  A new topic article newsletter is published once a month.

 

 

"America Tonight" Runs Story About ME/CFS Jan 3 by Nichol Grether

 

Jennifer Brea is among an estimated 1 million Americans with chronic fatigue syndrome. It's tough for Brea and her husband to plan for the future. There is no cure for CFS and little understanding about how the disease can unfold. America Tonigh

 

For Jennifer Brea, basic tasks like brushing her teeth and taking her medication are debilitating.

"I would describe it like being a broken battery, where every time you try to charge me, you know, I maybe fill to 5 percent," she said. "I think the thing that is really hard to understand about this illness is just how much it takes away from you and how so many of the basic things that make one feel like a human being just become impossible."

http://america.aljazeera.com/watch/shows/america-tonight/america-tonight-blog/2014/1/3/1-million-americanshavethisdebilitatingdiseasewithalousyname.html

 

Part 2

 

 

A disease with ‘a lousy name’

Myalgic encephalomyelitis is a complicated illness, said Dr. Nancy Klimas, director of theInstitute for Neuro Immune Medicine, a premier research and treatment center for CFS in Miami. She believes it’s a post-infectious illness, when the immune system is unable to bounce a person back to health after an acute infection. Its primary symptoms are profound fatigue, pain and cognitive difficulties. And it affects women at two to four times the rate of men.

"It's been a very, very small budget,” Klimas said about funds devoted to discovering treatments. “I had looked up male pattern baldness … $18 million for male pattern baldness [but only] $3 million for chronic fatigue syndrome, an illness that affects 1 million people in this country that has at least 25 percent of them out of work and on disability."

http://america.aljazeera.com/watch/shows/america-tonight/america-tonight-blog/2014/1/3/1-million-americanshavethisdebilitatingdiseasewithalousyname.html

 

CANARY SINGING: JEN BREA PORTRAYS CHRONIC FATIGUE SYNDROME ON NEWS CHANNEL By Cort Johnson on January 4, 2014

 

Canaries didn’t warn coal miners that the air was bad by dying. It was when they stopped singing that miners knew the air was getting foul.  Jen Brea may be sick. but she’s singing loud and clear about chronic fatigue syndrome in her film project.

 

In an empathetic  video interview with Al Jazeera, , she just sang again. In a piece cleverly titled “Chronic fatigue syndrome activists launch ‘uprising’ from their beds” Al Jazeera recently featured two video interviews with Jen Brea of the ‘Canary in a Coal Mine’ film project. Not only were the interviews moving, but Al Jazeera created a short, but good article on chronic fatigue syndrome, quickly noting how scare funding is, that there are no approved treatments, and bringing in Dr. Nancy Klimas to state:

 “It’s been a very, very small budget …I had looked up male pattern baldness … $18 million for male pattern baldness [but only] $3 million for chronic fatigue syndrome, an illness that affects 1 million people in this country that has at least 25 percent of them out of work and on disability.” 

Read more: Canary Singing: Jen Brea Portrays Chronic Fatigue Syndrome on News Channel:

 http://www.cortjohnson.org/blog/2014/01/04/making-real-jen-brea-misperception-me-cfs-video-interview/

 

 

HEALTH RISING RISES WITH PROHEALTH’S MAKING A DIFFERENCE CAMPAIGN By Cort Johnson on January 7, 2014

Sick with ME/CFS Rich Carson started Prohealth out of his laundry room in 1988 in order to bring lower cost supplements to patients. Prohealth has always been more than a business, though. Rich and Prohealth have supported Phoenix Rising and now Health Rising for years. I found that out when I worked with Rich on his Campaign for a Fair Name to replace chronic fatigue syndrome  with ME/CFS. Scratch the surface of this ME/CFS ‘businessman’ just a little bit and you get a fierce advocate who can and will talk for hours about what to do about this disorder.

The secret is that the man behind Prohealth  struggles with ME/CFS just as  well.  He works  very hard at his health  - harder at it than anyone he knows  - which is why he’s as healthy as he is right now, but a stab at a treatment a couple of years ago left him disabled for about a year. He’s built a great company, and he lives the limitations of ME/CFS every day. (It makes me wonder what he would do if he was really healthy :)) I think of Rich as yet another person so profoundly affected by ME/CFS/FM that he decided that if he could, he would work in this field, and help out and he has. Rich is passionate about his supplements.

 Prohealth gives 10% of their profits to support ME/CFS; almost $4 million dollars over the past 25 years. They’ve got thousands of articles on their website. Their Medical Advisory Board consists of Dr. Peterson, Dr. Lapp, Dr. De Meirleir and Dr. Kogelnik.  This company drenched in ME/CFS and FM like no other. And they produce good products. If supplements work for you – check out Prohealth this month!

Now Prohealth  has chosen Health Rising to kick off their Making a Difference campaign. They’re going to devote 10% of their profits from sales done through this link to Health Rising (and they’re guaranteeing a minimum of $1,000). If supplements support your fight with ME/CFS or FM check out Prohealth and their vast array of immune supporting, detoxifying, digestion supporting, pain reducing, etc. supplements.  (I like thinking that a portion of every purchase I make will get recycled back into the community.)

If you don’t know Prohealth, I urge you to get acquainted with them;  check out their website, sign up for their newsletters, check out their their awesome Facebook page and their Forums, and, if you use supplements, by all means give them a shot.

Read more: Health Rising Rises With Prohealth’s Making a Difference Campaign 
http://www.cortjohnson.org/blog/2014/01/07/health-rising-rise-prohealths-making-difference-campaign/

 

 

My Fibromyalgia Healing Journey - A 3-Pronged Approach by Karen Lee Richards, Health Guide, Chronic Pain, HealthCentral

 

Last month I began telling you about a new journey I set out on to improve my nutrition and fitness – and in the process, hopefully to reduce my fibromyalgia symptoms and improve my overall health. (See “My Fibromyalgia Healing Journey – The First Steps”)   When it comes to rebuilding wellness, Sue Ingebretson, my health coach through this journey, strongly believes in a three-pronged approach which she calls the Restoration Trio – nutrition, fitness and emotional wellness. Here's where I am in my journey in these three areas. - See more at:

 

http://www.healthcentral.com/chronic-pain/c/5949/165425/fibromyalgia-3-approach#sthash.uj0j5yU8.dpuf

 

http://www.healthcentral.com/chronic-pain/c/5949/165425/fibromyalgia-3-approach

 

 

 

For $3.99 ME/CFS and Fibromyalgia Patients Get Help

 

Fibromapp is a not-for-profit project designed to help people with chronic fatigue syndrome and fibromyalgia treat themselves smarter and feel healthier. The developers have been so kind as to brand an app for Health Rising which means that half of every purchase goes to Health Rising.

Read more: Bringing Order to Chaos: Health Rising’s FibroMapp App For Better Health 
http://www.cortjohnson.org/blog/2014/01/03/bringing-order-chaos-health-rising-fibromapp-app/

 

THE LIPKIN STUDY, THE VAGUS NERVE INFECTION HYPOTHESIS AND HHV-6: KRISTIN LOOMIS OF THE HHV-6 FOUNDATION TALKS – PT. I By Cort Johnson on January 9, 2014

 

Highlights

**The assays Dr. Lipkin used in the CFI ME/CFS pathogen study would not detect the kind of herpesvirus infections Kristin Loomis believes are present in chronic fatigue syndrome HHV-6 has been suspected a playing a role in ME/CFS since it was first discovered

 

**High levels of the anelloviruses Dr. Lipkin found could be an indicator of immune dysfunction in ME/CFS; however, while the tests indicated anelloviruses were commonly found we don’t know what the levels were

 

**Fine needle biopsies of the thyroid gland in ME/CFS could uncover evidence of herpesvirus/enterovirus infections

 

**The co-discoverer of HHV-6, Dr. Daram Ablashi, believes from 15-25% of people with ME/CFS may have an difficult to detect, low-grade HHV-6 infection

 

**Kristin Loomis called Michael VanElzakker’s Vagus Nerve Infection hypothesis a ‘masterpiece’.

 

**Rates of chromosomally integrated HHV-6 (ciHHV-6) may be increased in ME/CFS and ciHHV-6 reactivation could account for some cases of ME/CFS Background How did you come to found the HHV-6 Foundation?

Read more: The Lipkin Study, The Vagus Nerve Infection Hypothesis and HHV-6: Kristin Loomis of the HHV-6 Foundation Talks – Pt. I 
http://www.cortjohnson.org/blog/2014/01/09/lipkin-study-vagus-nerve-hhv-6-loomis-hhv-6-foundation/

 

 

MOVING TARGETS: FIBROMYALGIA AND CHRONIC FATIGUE SYNDROME OVER TIME By Cort Johnson on January 12, 2014

 

Fibromyalgia

 

 “The human brain displays a high degree of plasticity, and gray matter and white matter change throughout the life span.” Authors

 

Recently we saw that more intense connections from the one part of the brain  (prefrontal cortex) to another part of the brain (limbic system) appear to set the stage,  when the appropriate triggering event occurred, for a life of chronic pain for some people.

 

Does being in pain over long periods of time change the brain?

 

Other research indicates that the gray matter of the brain (the neuronal cell bodies)  tends to become reduced over time in people with chronic pain, and that those reductions occur areas of the brain associated with pain processing, cognition  and the emotions; the prefrontal cortex, the insula and the anterior cingulate.

 

This study asked if the brain becomes more affected by pain as we age. Specifically it asked if the pain processing centers of the brain were different in people in younger and older people with fibromyalgia.

Read more: Moving Targets: Fibromyalgia and Chronic Fatigue Syndrome Over Time 
http://www.cortjohnson.org/blog/2014/01/12/moving-target-fibromyalgia-chronic-fatigue-syndrome-time/

 

 

Support Group Leader, Board Members, and Sources of Info for Doctors and Patients:

-  Kebbie Cannon is our Support Group Leader (704) 843-1193 at kebbie1@windstream.net

- Medical Advisor Dr. Charles Lapp, Hunter Hopkins Clinic in Charlotte. You can visit Dr. Lapp's Web Site at www.drlapp.com where there is ample info about his clinic and making an appointment if you need. It offers many links to other sources of information.

- http://www.cfidsselfhelp.org/ - Going thru Dr. Lapp's site you'll find links to various sorts of help, one of the best self help sites on the Internet is Bruce Campbell's self-help site (Dr. Lapp was involved in this).

- Treatment - Another site, which is primarily directed toward helping your doctors treat these disorders but that info is quite beneficial for patients to be aware of, is: http://www.cfstreatment.info/

- Valuable Site for ME/CFS/FM Information by Cort Johnson http://www.cortjohnson.org/

- Long Time Source of Help for ME/CFS/FM and related disorders along with supplements with proceeds of sales going to help ME/CFS/FM.

ProHealth - Excellent source of ME/CFS & FM Info along with a source for "good" supplements.  http://www.prohealth.com/index.cfm

Disability Attorney's Website - www.LynnBishop.net

- Treasurer is Leslie Vann at llvann@usa.net

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

- Publicity Chairman is Howard Honeycutt at honeycutt2194@carolina.rr.com

 

- Visit our web site at www.CharlotteCFS.org