Charlotte CFS/ME/FM Support Group Newsletter

for November 18, 2013

 

 

Happy Thanksgiving To You All,

 

I've not kept up with articles of interest like I would have preferred - I have family coming for Thanksgiving but I think there are a few here you may enjoy.

 

Our meeting this month is Thursday, November 21, 7-9PM.   The speaker is Chrys Kub, Yoga Instructor AND Physical Therapist.  She instructs how-to-teach Yoga to other Professionals and 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/

 

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 meet.

 

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 addy.  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

 

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 or other beverage 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.

 

I hope that a few other doctors might choose to join us like Dr. Waring and Dr. Black or any other doctors receiving this newsletter that live in our area.  You can just stop by even if you can attend the entire 2 hour party.

 

January 16, 2014 - There is no regular meeting in January but the support group board members will 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 the board meeting

 

We can always use help is setting up chairs, bringing refreshments (you get reimbursed for the cost), suggesting a speaker and contacting them if we agree that person would be a good candidate to speak to our group. 

 

I had planned to get our doctor list updated but I just haven't been able to. Anyone who is experienced in this area of expertise and would take this on would be very appreciated.

The board meeting will be held at the church in Room 6 where we have all our meetings.

 

 

 

66 ME/CFS Advocates Send Letter to Secretary Sebelius in Support of their Experts  Jeannette Burmeister

Posted on

Today, 66 ME/CFS advocates sent a letter to Department of Health and Human Services Secretary Kathleen Sebelius, joining 50 ME/CFS experts in calling for the adoption of the Canadian Consensus Criteria (CCC) as the definition of the disease as well … Continue reading

http://thoughtsaboutme.com/author/peninsulajay/

 

 

 

Check out their latest newsletter:

http://campaign.r20.constantcontact.com/render?llr=q9tlduoab&v=001bNaaDsMZRRcY9bR4aSATJ-p-MfXNF-Uqyqaf1zCDBLITcGjAQGFZRCxGUkGZuRcQBC_sgPZqVevDdnj2rmIUYZA-AlZUR7i68SE-Srm_BBfLUk7M49df7yj5513yJPcGcoIFmYpjbcniam1cheEoJqIhQKSEhJs1POCl7bEdiOISxrp3nhykw7DHdkIssmC1q3QnwSC6_gbUTaYPqfEauOzUhJoycEBkg8KB9MHmuy-1hnHCHdNtOPtw5k3TMER0QtjE6fh5ZbP7RtNgMKjl6RVeOF528T8w4doslU2OFHqL0eepfOKa1Q%3D%3D

 

 

 

FDA Puts the Squeeze on Pain Drugs - Some Fibromyalgia and ME/CFS Patients To See Effects

 

 

The FDA's recent restrictions on the most widely used drugs in the United States - hydrocodone and acetaminophen containing painkillers such as Lortab and Vicodin - will make them more difficult to get at a time when many are already having trouble getting relief.

Find out why the FDA did what they did and what it means for you in

http://www.cortjohnson.org/blog/2013/10/29/fda-squeeze-pain-drugs-fibromyalgia-chronic-fatigue-syndrome/

 

 

 DYSAUTONOMIA 101 for ME/CFS/FM
From the Founder of Dysautonomia International - Check it out here

Heart Palpitations, Heart Pounding and Heart Fluttering – Oh Lord!..A Cardiologist on Heart Racing and Arrhythmias in Chronic Fatigue Syndrome

By Cort Johnson on November 1, 2013

Dr. Visser, a Dutch cardiologist,  has treated thousands of chronic fatigue syndrome (ME/CFS) patients over the years, and now focuses exclusively on them. In his next series of video’s from the Dutch ME Association he talks about some of the sometimes disturbing heart symptoms he finds  in chronic fatigue syndrome.

Heart racing during rest is commonly found in ME/CFS…..

Many symptoms are more painful, but few are as disturbing psychologically as having something possibly going wrong with your ticker. I’ve been to the doctor/emergency room twice over the past three decades checking on heart issues and now they’re back again, so I’m very interested in what Dr. Visser, a cardiologist, has to say.

He began with the problem of a faster than normal heartbeat at rest – something that’s been well documented in chronic fatigue syndrome. For myself, I notice sometimes when I lie down I can hear my heart pounding, which is a sound that is not all conducive to resting :).

Healthy peoples heartbeat speed at rest can range from 50 bpm (beats per minute) to 70/80 bpm but when you get above 100 bpm, you’re definitely in the pathologically abnormal range – and that’s what shows up in some people with chronic fatigue syndrome. What we have is a population that as a group has higher – and sometimes much higher – than normal heartbeat rates at rest.

To read the rest of the article:

http://www.cortjohnson.org/blog/2013/11/01/heart-palpitations-heart-poundin-heart-fluttering-oh-lord-cardiologist-heart-racing-arrythmias-chronic-fatigue-syndrome/

 

The CFS Community spoke... and the FDA Listened:  The FDA's Evocative "Voice of the Patient" Document

By Cort Johnson on November 14, 2013

 

 

“CFS and ME is a serious disease or set of diseases for which there are currently no FDA approved therapies” ‘Voice of the Patient’ Document

The FDA’s Patient Focused Drug Development Initiative marks the first time the FDA is implicitly

The Chronic Fatigue Syndrome community spoke and the FDA really listened…

including patients narratives and needs into their drug development process. Designed to more “systematically gather patients perspectives on their conditions and available therapies,” the Initiative was one response to Congress’s concern that chronic illnesses were being left out.

How the Initiative will ultimately affect drug development remains to be seen, but, in as misunderstood a disorder as ME/CFS, simply having the FDA listen to ME/CFS patients and then accurately report on what they said is a big step forward.

The good news is that the FDA really listened. The ‘Voice of the Patient’ document they produced emphasizes the costs (severity) of this illness, and cites the same two major symptoms (post-exertional malaise, cognitive problems) as the Canadian Consensus Criteria (CCC). If the IOM contract goes forward, this ‘Voice of the Patient’ document provides validation by an important branch of the government of key aspects of the CCC.

To read the rest of the article:  http://www.cortjohnson.org/blog/2013/11/14/chronic-fatigue-syndrome-community-spoke-fda-voice-patient-document/

 

 

 

A New Website, A New Home for News from the Association

Posted: 15 Nov 2013 01:17 PM PST

Please join us in celebrating our new online home at www.SolveCFS.org !!

 

We have undergone a tremendous migration and update of information to this new, single online presence. We hope you will join us at SolveCFS.org for cleaner information, easier navigation and ONE place for ALL the information from the CFIDS

http://solvecfs.org/

 

ME/CFS & Aging

It’s been more than 20 years since the Incline Village, Nevada, and Lyndonville, New
York, outbreaks brought attention to the mysterious and complex illness now called
chronic fatigue syndrome (CFS). Since then, we’ve seen research expand, health
organizations become more engaged and the public slowly move toward greater awareness of CFS as a serious and debilitating illness.

That’s how time is playing out in the historic sense. But what about how time plays
out in the lives of the many individuals with CFS who are now reaching their senior
years? What role does aging play in this illness and what are some of the special issues
CFS patients, their families and their doctors face?

To read the article in its entirety:

http://solvecfs.org/wp-content/uploads/2013/10/cfsaging.pdf

 

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 - http://www.prohealth.com/index.cfm

- 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