Charlotte CFS/ME/FM Support Group Newsletter

for September 29, 2013

 

 

Hello Dear Friends,

 

We have sad news that our dear Margaret is in her final weeks.  Margaret has been such a champion for CFS and FM.  When she was healthier, she'd be at nearly every meeting right with Kebbie.  For those who may not know, Margaret Cannon is SGL Kebbie Cannon's mother.  Margaret used to volunteer at the CFIDS Association back in the days when they were able to offer members information about support groups and that sort of thing. Margaret was always there to help with mailings and whatever was needed the day she came in.

 

She's always been like a sweet mother to all of us. She cared so much and would help anyone in need when she could. I know that Kebbie would appreciate your prayers and thoughts during this difficult time as she cares for her Mom.

 

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The October 19th meeting -  will be a time of sharing with open discussion about the topics that are important to you.  We'll kick it off with a discussion of how we cope with family and friends who don't believe us and the doctors who don't believe in the diseases we live with day in and day out.  The actual meeting reminder will come to you the weekend prior to the meeting on October 19th.

 

NOTE:  Members, if you are anticipating a move to a new Internet provider, be sure to email me your new email addy.  If I somehow miss it - and I could - don't hesitate to remind me if you don't receive a newsletter.  We're always the 3rd Thursday so if you don't get the reminder, email me again.

 

 

 

Upcoming meetings

 

November 21 -  Speaker is Chrys Kub, Yoga Instructor AND Physical Therapist, she teaches how-to-teach Yoga to other Professionals & is a specialist in disabled Yoga Practice. It is a very HEALING, gentle type of Yoga. She can hook people up with her students for reduced rates.  (They would be practicing under her tuteledge)!)  And she'll come to you if needed. Her web site is:  http://www.yogatherapycharlotte.com/

 

December 19 - Annual Christmas Party - with Dr. Lapp as our Santa and will tickle the ivories for our sing-along.  This is not a regular meeting but a social time.  Each person can bring something to share.  It can be anything from juice to some favorite deli items - or if you are really ambitious a home-baked item.  But if you are having a bad time but feel like getting out for a little while, come whether you have anything to share or not. We always have plenty.  Put this date on your calendar as we always have a fun time.  It gives our newcomers a chance to network and get better acquainted with our other members.

 

January 16, 2014 - There is no regular meeting in January but the support group board members use this time to plan for all the 2014 meetings.  And anyone who is interested in volunteering their time in any way possible, please come to this meeting to see what its all about. You are under no obligation to make a commitment just because you attend this meeting.

 

Articles in this Newsletter

 

- Memorial for Tom Hennessey 9/29/13

- Feds Snub CFS Community Again, Cut Experts Out

- Web Seminars of Prof. Dr. K. DeMeirleir Now Online

- Celiac Disease, Gluten Sensitivity and CFS #2 Autoimmunity, etc.

- Is the Glycemic Index Diet Right for CFS & FM

- Researchers Assert Inexpensive Biomarker for FM

- Increased Levels of IL-17A Found in FM Patients

- Tribute to Tom Hennessey

- The Reaching Out Web Site

 

 

 

 

'My Brother By Choice' - A Good-bye to Tom Hennessey - Fierce Advocate:  Memorial Tomorrow 9/29/13 by Cort Johnson, September 28, 2013

 

Of all people, I thought, not Tom Hennessy. Tom was such a fighter. It was true he had the most painful case of ME/CFS I ever encountered. A couple of years ago, ironically on his way to see a doctor, he’d fallen asleep and slammed into the back of an 18-wheeler, severely injuring himself. I don’t how he’d kept going after that, but he’d been dealing with horrific pain for decades.

Tom-Hennessy-2008

Tom Hennessy in 2008 at the Symposium on Viruses in CFS

Finally it got to be too much, and he took his life. To read the article in its entirety:

http://www.cortjohnson.org/blog/2013/09/28/my-brother-by-choice-goodbye-tom-hennessy-fierce-advocate-memorial-tomorrow/

 

Feds Snub CFS Community "AGAIN":  Cut Experts Out, Fund Outside Group to Redefine CFS  by Cort Johnson September 18, 2013

 

In the face of vociferous opposition, the Feds reversed their decision to stop an outside group from redefining ME/CFS for doctors and are continuing forward to produce a contract with them.

This is weird and unsettling in so many ways in, not the least of which is spending large amounts of money on a project nobody seems to want, to duplicate a definition (Canadian Consensus Definition) (almost) everybody seems to like.

NOTE from Nancy Further into the article there are comments about how the HHS does not want to hear from us, CFS experts or anyone else who has experience in any way with CFS.  That's our government folks!

Read about it and please support the movement to stop this contract and bring ME/CFS experts back into the fold in... (to continue reading this article, go to:

http://www.cortjohnson.org/blog/2013/09/18/feds-snub-chronic-fatigue-syndrome-community-cut-experts-out-fund-outside-group-redefine-me-cfs/

 

Web seminars of Prof. Dr. K. De Meirleir NOW online

NOTE from NancyThe following was posted on Co-Cure.  The videos are by Dr. DeMeirleir and he is not speaking in English.  But there are subtitles.  What I do is turn off the sound and read the subtitles.  I've not had time to read everything but for anyone who can, you may find the content very interesting.  I'll add new info as it becomes available.

Right now the first three video's with Prof. Dr. K. De
Meirleir are online. See the links below. 
We hope you will share this video's on your
internetpage, blog, Facebook, Twitter or through
other ways to reach our fellow patients all over the
world.
.... (snip)

1. Is ME and/or CFS a disease?
http://youtu.be/X-uwSxoUqTY

2. Is it possible to diagnose ME/CFS
http://youtu.be/iHTV0lm5qMQ

3. Is ME a hereditary condition?
http://youtu.be/zrRRaZlMWtY

You can also view all video's with this link, but
in that case you'll have to look for the English
titles:
http://tinyurl.com/a8d3rdh
Best regards,  Rob Wijbenga
Chairman ME/cvs Vereniging Nederland

Celia Disease, Gluten Sensitivity and CFS #2:  Autoimmunity, Cross-Sensitization, Testing

http://www.cortjohnson.org/blog/2013/09/09/celiac-disease-gluten-sensitivity-chronic-fatigue-syndrome-pt-2-autoimmune-links-testing/

 

 

A Healthier Remedy for Chronic Pain on the Horizon

This SharePost was posted by Karen Lee Richards:

With the ever-growing pressure on doctors not to prescribe opioids for chronic pain, it was encouraging to see a new study which found that a derivative of the main ingredient in fish oil was effective in treating neuropathic pain.   Following is the news release from Duke University:   DURHAM, N.C. -- Physicians and patients who are wary of addiction to pain medication and opioids may soon have a healthier and more natural alternative.   A Duke University study revealed that a derivative of DHA (docosahexaenoic acid), a main ingredient of over-the-counter fish oil supplements, can sooth and prevent neuropathic pain caused by injuries to the sensory system. The results appear online in the Annals of Neurology. To read the entire article go to:

http://www.healthcentral.com/chronic-pain/c/5949/161956/healthier-remedy-chronic

 

 

 

 

Is the Glycemic Index Diet Right for CFS & FM

 

by Cort Johnson, September 23, 2013

 

Carbohydrates, Chronic Fatigue Syndrome and Fibromyalgia

Originally developed to help diabetics control their blood sugar, the low glycemic index diet focuses on foods that keep blood sugar levels consistently low. It’s similar to other diet plans that eliminate the high carbohydrate, highly processed foods that pack the pounds on but eliminates or reduces some otherwise healthy foods. The low glycemic index diet is often used to lose weight, and it forms the basis for some popular diet plans such as the South Beach Diet and The Zone diet.

http://www.cortjohnson.org/blog/2013/09/23/glycemic-index-diet-right-chronic-fatigue-syndrome-fibromyalgia/

 

Note:  You can subscribe to Cort's blog and never miss an article. 

 

-- Also from Cort Johnson 9/18 via ProHealth.com --

 

 

Researchers Assert Inexpensive Biomarker For Fibromyalgia Found: Immune System Implicated

 

A Biomarker for Fibromyalgia

Has a cheap and readily available biomarker for fibromyalgia been found? Ohio State University researchers assert they’ve done just that using a process called infrared micro-spectroscopy that analyses ‘spectra’ to determine the chemical composition of the tissue or the blood. [See “A bloodspot-based diagnostic test for fibromyalgia syndrome and related disorders."]

In this small study blood samples from fibromyalgia, rheumatoid and osteoarthritis patients were analyzed for their chemical composition.  To read more:

 

http://www.prohealth.com/fibromyalgia/library/showArticle.cfm?libid=18347&B1=EM092413F&utm_source=EM092413F&utm_medium=em&utm_campaign=FM&slvor=11269.1113849.0.1.0.86766&eid=nmhenson@aol.com

 

 

Increased Levels of IL-17A Found in Patients with Fibromyalgia

 

Editor's comment: Interleukin-17A ( IL-17A) is a proinflammatory cytokine produced by activated T cells.  High levels of  IL-17A are associated with several chronic inflammatory diseases including rheumatoid arthritis, psoriasis and multiple sclerosis. 

Increased levels of IL-17A in patients with fibromyalgia.
By A. Pernambuco, et al.

Abstract:

OBJECTIVES: The aim of this study was to evaluate the plasma levels of IL-17A in fibromyalgia patients, and to look for any correlations between this data and the concentrations of some pro- and anti-inflammatory cytokines.

http://www.prohealth.com/library/showarticle.cfm?libid=18360


 

 

Tribute to Tom Hennessey from the ME/CFS & FM Community from Health Central thanks to Karen Lee Richards (ChronicPainConnection)

 

Tom Hennessy – Originator of May 12 Awareness Day – Passes Away

 

http://www.healthcentral.com/chronic-pain/c/5949/162986/originator-awareness-day

 

 

 

The Reaching Out Web Site

 

It is a wealth of information.  I'd love some feedback about how helpful it might be to some of you.  You can subscribe to their monthly newsletter as well.

 

http://www.reaching-out.info/

 

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Our Support Group Leader and Board Members:

-  Kebbie Cannon is our Support Group Leader (704) 843-1193 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.

- Treatment - Another site, which is primarily directed toward helping your doctors treat these disorders, is: http://www.cfstreatment.info/

- 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