Charlotte CFS/ME/FM Support Group Newsletter

for October 14, 2013

 

Hello Everyone,

Our Meeting this month on October 19, 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. 

Directions:  As always, our meetings are at 7:00 PM at Sharon Presbyterian Church ( 7-9 PM), located 0.8 miles south of SouthPark Mall at 5201 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.  We have a new meeting room - Classroom 6.  When you come into the building, go past the door to the Parlor where we used to meet and walk into the gym and immediately turn left. You come to a door marked "6" where we will be meeting.

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

NOTE:  Members, if you are anticipating a move to a new Internet provider, be sure to email me your new email address.  If I somehow miss it - and I could - don't hesitate to remind me if you don't receive a newsletter.  Our meetings are always the 3rd Thursday of the month 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.

NOTE from Nancy:  Any time you see an article that's has 2 or more parts and you don't remember seeing the previous parts, I may not have sent them as there's so much to go thru.  But quire often they are from Cort Johnson's Blog and when you are in the blog, you have access to all of these articles no matter how many parts.

Also, now when I cut and paste from Cort's blog of newsletters, I'm unable to control the font and spacing much of the time. This is why you see a variation in spacing, etc.

 

Articles in This Newsletter

- The Fibromyalgia and Chronic Pain Newsletter

- ATP, Hydrogen Sulfide, Natural Killer Cells and the Heart

- 2013 ME/CS Physician Course

- Shorter Easier Drug Trials

- Celiac Disease, Gluten and ME/CFS PT III

- An Herbal Approach to CFS That Worked

- Damaged Neuroprotective Process Spells Pain for Fibromyalgia

- Twin Proteome 'Study' Finds Evidence of Inflammation...

- Me and My Body

 

The Fibromyalgia and Chronic Pain Newsletter.

http://www.fmcpaware.org/fibromyalgia-chronic-pain-life-magazine/140-magazine/1359-fibromyalgia-chronic-pain-life-magazine.html

  $50 for hardcopy.

I'm waiting for a response from an FMAware person to learn if FMAware morphed into the Fibro and Chronic Pain News.  I do not think I will get a response as its been almost a month.

 

June Newsletter:

http://www.benchmarkemail.com/c/v?e=30027D&c=2508E&l=1C204E0&email=pIBEwpaS5hMLPHWc2pYS%2FjciHg%2FVbFy1&relid=4C4A98BC

 

 

ATP, Hydrogen Sulfide, Natural Killer Cells and the Heart: The ME/CFS Associations ME/CFS Experts Video Series is Back!

 

 
 

The ME/CFS experts video series from the ME/CFS Association in the Netherlands is back with Dr. De Meirleirs last video, and the start of a new series with Dr. Visser, an ME/CFS cardiologist, no less - who has dedicated himself to the care and support of people with ME/CFS.

Dr. De Meirleir gives us his take on tests ME/CFS patients should (or shouldn't take)...as well as what might be causing the alcohol intolerance found in this disorder, while Dr. Visser tells us what's going on with the chest pain and shortness of breath so commonly found....

Check out what these docs said in:

http://www.cortjohnson.org/blog/2013/10/10/atp-hydrogen-sulfide-natural-killer-cells-heart-mecfs-associations-video-series-back/

 

From Co-Cure - Be sure to watch the 45 min. video

 

Date:    Mon, 30 Sep 2013 11:26:11 -0500
From:    Tate Mitchell <tatemitchell@gmail.com>
Subject: NOT:
2013 ME/CFS Physician Course at Birmingham's St. Vincent's Hospital

http://www.youtube.com/watch?v=zRyG58F4A0Q


2013 ME/CFS Physician Course at Birmingham's St. Vincent's Hospital
Posted by: pandoranet.org; Published on Jul 9, 2013

Video description: Our organization motivated St. Vincent's Healthcare
System in Birmingham, Ala. to sponsor a series of physician's courses
on neuro-endocrine-immune diseases. This one was given by Dr. Anthony
Komaroff on ME/CFS on May 7, 2013 to 69 people, 45 of them physicians.


It includes PANDORA Org president Lori Chapo-Kroger as the patient
example.

 

The IACFS/ME Physician Primer, which is based on the Canadian
Consensus Criteria, was distributed to the students. Dr. Komaroff
explained that the disease is not depression and is often triggered by
infections.

 

After the course, we had two doctors tell us they want to
be kept up to date on the research.

 

----- AND -----

 

Date:    Mon, 30 Sep 2013 11:42:58 -0400
From:    Deborah Waroff <debo@TIAC.NET>
Subject
: Shorter, easier drug trials

For cancer, at least, regulators are starting to accept shorter, more
limited trials of drugs than the standard randomized controlled trial.
See this Reuters article for more.

http://www.reuters.com/article/2013/09/30/us-cancer-drugs-insight-idUSBRE98P05N20130930

 

An Herbal Approach to CFS - That Worked....  by Cort Johnson, Aug 11, 2013

http://www.cortjohnson.org/blog/2013/08/11/an-herbal-approach-to-chronic-fatigue-syndrome-that-worked/

Celiac Disease, Gluten and ME/CFS PT III: A Modern Malady Obscured, Testing and Next Steps

 

 

In her third blog on ME/CFS/FM and gluten, nutritionist Niki Gratrix asserts that outdated food intolerance studies are obscuring potential dangers, asks why rates of gluten intolerance have risen so much recently, and highlights tests that can help you determine whether you have issues with gluten intolerance or not. To read the article:

http://www.cortjohnson.org/blog/2013/08/29/celiac-disease-gluten-sensitivity-chronic-fatigue-syndrome-modern-malady-obscured-testing-next-steps/

 

Damaged Neuroprotective Process Spells Pain for Fibromyalgia - Suggests Small Fiber Neuropathy is Present by Cort Johnson

From stiff muscles to painful trigger points to problems with exercise, the muscles can be a problem in fibromyalgia. It turns out that muscles have an interesting way of relaxing when they’re in pain. Every time you contract a painful muscle, your nervous system should take a little break, give your muscles a little break, and reduce your pain.  To read the remainder of this article, go to link below the credits.

Rev Bras Reumatol. 2013 Jun;53(3):288-295.Importance of cutaneous silent period in fibromyalgia and its relationship with disease characteristics, psychological disorders and quality of life of patients. Umay EUlas UUnlu EAkgun HCakci AOdabasi Z.

http://www.cortjohnson.org/blog/2013/10/06/damaged-neuroprotective-process-pain-fibromyalgia-small-fiber-neuropath/

 

Twin Proteome 'Study' Finds Evidence of Inflammation and Metabolic Problems in Chronic Fatigue Syndrome: Sets the Stage for Round Two...

 

 

Lots of gene expression studies are going on in ME/CFS but not many protein studies - which seems, on the face of it, to be strange. The proteins, after all, are the worker ants of the body; they initiate most of the changes that occur and have to, at some level, be deeply involved in ME/CFS.

Unfortunately, protein studies are complex and expensive, and therefore rare in ME/CFS. A Italian research team that's been pioneering the study of proteins in the saliva - a easier, cheaper sample to use - recently, however, turned its attention to ME/CFS. 

This 'study' is a small one, but the results pointed in a promising direction. Check out what proteins might be awry in your saliva in... To read on:

http://www.cortjohnson.org/blog/2013/10/08/twin-proteome-study-finds-evidence-inflammation-metabolic-problems-chronic-fatigue-syndrome-sets-stage-round-two/

 

(A)viva ME/CFS! Contest, Your Brain for Science, Making the Invisible Visible, the Definition Question - An Events Blog

 

There's a lot going on right now....a group gearing up to blast Canada with a mass ME/CFS awareness campaign in the Aviva contest, a study that wants to look at your brain, a contest to make your invisible pain visible and a thank you to ME/CFS experts for their recent stand for the Canadian Consensus Definition.

Check it all out in our 'Events' blog -

http://www.cortjohnson.org/blog/2013/10/07/aviva-mecfs-contests-cartoons-definitions-events-blog/

 

 

Me and My Body (My Body!) - Reflections on Free Will and Pudding Thighs....

 

 

Lots of things change when you have ME/CFS/FM, and one of the more difficult is how your body changes - not only its functioning, but how it looks. Toned muscles tend to collapse into spaghetti, and new bulges appear as it melts hard wrought fitness gains away.

Find out how a formerly buff fitness devotee deals with her pudding thighs post-ME/CFS, and give us your thoughts in Carol's latest blog

http://www.cortjohnson.org/blog/2013/10/12/body-body-reflections-free-will-pudding-thighs/

********************************************************************************************************

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