Charlotte CFS/ME/FM Support Group Newsletter

for July 5, 2012

 

Happy 4th of July 

During the Summer We Meet for Daytime Luncheons as follows:

July 19th, Thursday, at 1:30PM - Panera Bread - 7510 Pineville Matthews Road, Charlotte, NC 28226; Phone: 704-540-0309, near Dr. Lapp's office. It is across the street (Rt. 51) from the Carmel Commons shopping center where the Fresh Market is.  It is also very close to Dr. Lapp's office.

 If you are coming from Matthews on Hwy 51 - you pass the intersection where Dr. Lapp's office is and keep going - Panera Bread is at the end of that little strip shopping center.   Just past it on the right, you turn for parking after you pass Panera bread on the right. Be sure to look for the blue and purple balloons to find other members of the group.

 August 16th, Thursday, at 1:30PM - Panera Bread - 1904 Matthews Township Parkway, Matthews, NC 28105; Phone:  704-846-4003.  This is located in parking area of the strip mall where Target is across from another mall (forget the name).  This is not too far from and near the hospital as well as the intersection of Independence (Rt. 74) and Matthews Township Parkway (Rt 51).

 I will be out of town on vacation in NY visiting family from August 2nd thru August 16th so there will be no luncheon reminder from me except for one I'll send with the next newsletter shortly before we leave for New York.

 Note:  Our September 20th meeting will feature our very own Dr. Charles Lapp. 

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

ME/CFS Patients More Susceptible for Lymphoma

 From Rich Carson's E-Mail... A recent study found that ME/CFS patients in general have significantly increased average risk for developing non-Hodgkin lymphoma. For many years we were told that ME/CFS is a benign illness but now science has revealed the truth. Not only can ME/CFS be severely disabling, in some cases it can be fatal.

 New website for Simmaron Research + CSF study donation matching campaign - Read on...

Note: Simmaron Research in Incline Village, NV and affiliated with Dr. Daniel Peterson, has a new website + donation matching campaign. From the website- "Cerebral Spinal Fluid Study- Simmaron’s top priority is to fund this pilot study to investigate cytokines and immune/autoimmune activity in CFS/ME spinal fluid...

 An investment of $225,000 will allow Simmaron to complete a pilot study, which will open the door to an $800,000+ grant for a larger follow-up study investigating immune dysfunction in CFS/ME. That’s more than $1 million of targeted biological research conducted by world-renowned scientists specializing in CFS/ME! Simmaron has already raised $75,000 so we’re one-third of the way there.  But we need your help to reach
our goal."

Does anyone know if Simmaron would qualify for this years Chase Community Giving contest? From a quick look I can't tell why they wouldn't.


https://listserv.nodak.edu/cgi-bin/wa.exe?A2=CO-CURE;3745e9b8.1206C

http://www.chasegiving.com/

-----------------------------------------------------------------------

http://simmaronresearch.com/
http://simmaronresearch.com/research/

Simmaron collaborates with several world-renowned researchers, each possessing many dedicated years of service to CFS/ME research. We are focusing our research efforts on four disciplines for which there is well-documented evidence of a connection with CFS/ME: immunology, virology, exercise physiology and genetics.

Current Research Opportunity
Cerebral Spinal Fluid Study
Cost of the study: $225,000
$150,000 in funding still needed

Simmaron’s top priority is to fund this pilot study to investigate
cytokines and immune/autoimmune activity in CFS/ME spinal fluid.

The reason this study is a high priority for Simmaron is three-fold:

1.
Low Natural Killer Cell function has been long recognized as a hallmark finding in CFS/ME patients; yet until now, there have been no studies which identify why and how Natural Killer Cells function differently in patients with this illness.

2. Recent studies point toward characteristics of autoimmunity in patients, a new direction for CFS/ME and one which the Australian team of collaborators has been investigating. Researching these immune characteristics in spinal fluid is pioneering.

3. Dr. Marshall-Gradisnik’s team of collaborators, working with Simmaron, has already been awarded a landmark grant of over $800,000 from the Mason Foundation to pursue the results from the Simmaron
pilot study. This means that Simmaron’s investment of $225,000 will result in more than $1 million in ground-breaking CFS/ME research.

Collaborators:
Sonya Marshall-Gradisnik, PhD
Bond University in Australia

Daniel L. Peterson, MD
Sierra Internal Medicine, Incline Village, NV

Every $1 you invest in this project will yield $5 of CFS/ME research!

This is a rare opportunity in the world of CFS/ME research.  An investment of $225,000 will allow Simmaron to complete a pilot study, which will open the door to an $800,000+ grant for a larger follow-up study investigating immune dysfunction in CFS/ME.

That’s more than $1 million of targeted biological research conducted by world-renowned scientists specializing in CFS/ME!  Simmaron has already raised $75,000 so we’re one-third of the way there.  But we
need your help to reach our goal.

See Pending and Proposed Investigations


http://simmaronresearch.com/sr-research/

See Completed Investigations


http://simmaronresearch.com/research/

             

Dr. Dan Peterson Addresses Patients/Physicians at Stockholm Conference

 Dr. Peterson is from Incline Village, Nevada where one of the large epidemics of CFS occurred back in the mid-1980s.

 Many thanks to Karen Richards who made these links to the videos possible for me to share with you.  This is actually a series of four videos of a little under 30 minutes each that together comprise a presentation Dr. Peterson made in Stockholm.  The information on clonal T-cell rearrangement that Rich mentioned in the letter is on video #2.  He begins talking about it at about 17:55 into the second video. 

 Dr. Peterson's presentations are in English but there are Swedish subtitles.  He's speaking to an audience of both physicians and patients. 

Video #1–  http://www.youtube.com/watch?v=pyHo9-ShkXI
Video #2–  http://www.youtube.com/watch?v=d86dNggUVRI
Video #3–  http://www.youtube.com/watch?v=L63TpHaskhU
Video #4–  http://www.youtube.com/watch?v=3VkTLKBGo8Y

  https://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind1206d&L=co-cure&F=&S=&P=8656

  Interview with CFS Patient by L. King

  http://www.youtube.com/watch?v=vBVCsFqIc28&feature=em-uploademail

 

 Congress Drops Efforts to Add Tighter Controls on Painkillers

By Karen Lee Richards, Health Guide Wednesday, June 20, 2012

 Good news for chronic pain patients––for now at least. Last month the Senate passed a bill reauthorizing user fees for the FDA, which also included new, tougher restrictions for opioid pain medications containing hydrocodone like Vicodin and Lortab. However, when the bill went to the House on Monday, the proposed restrictions were dropped from the bill. To continue:

 http://www.healthcentral.com/chronic-pain/c/5949/153960/painkillers

 For more articles by Karen:

 http://www.healthcentral.com/profiles/c/5949/index

 

The Simple Secrets of Refreshing Sleep

Optimizing Your Health — Part 2: Optimizing Sleep

This is the second installment of Dr. Teitelbaum's new series on optimizing health. This week he's focusing on an area of crucial importance to health and well-being: getting a good night's sleep.

http://www.endfatigue.com/newsletters-2/nl_2012-06-22.html

  

From Co-Cure:   Subject: NOT: CFIDS Assoc. Webinar on PEM

Date:    Tue, 26 Jun 2012 11:02:11 -0500
From:    Tate Mitchell <tatemitchell@gmail.com>
http://www.facebook.com/CFIDSAssn


Join us for a webinar on post-exertional relapse/malaise (PEM) featuring three of the top experts on the topic. July 19 at 2 PM (Eastern time) we'll host Dr. Chris Snell, Dr. Mark Van Ness and Staci Stevens of the Pacific Fatigue Lab to address the Top 10 Things You Need to Know About PEM. Your questions submitted with registration will help shape the program

Registration is now open at:

http://bit.ly/PEM-webinar-reg

There is no cost to attend.

Please "share" this invitation to help get the word out!

Top 10 Things You Should Know About Post-Exertion Relapse; Thursday, July 19, 2012 2:00 PM - 3:30 PM EDT

Webinar Registration:

https://www1.gotomeeting.com/register/468532592

 

Fibromyalgia Network - June 2012 eNews Alert

 In this eNews:

 Awareness Contest Winners
How Bad is FM Sleep?
Wired or Hay-Wired on Caffeine?
Sleep Deprivation Shows Gender Differences
You Know You Have Fibro When...
What Therapies Are Working for You?
Diet & Nutrition for Fibro
Keep Your Membership Up-to-Date

 http://www.fmnetnews.com/pages/enews/e-alert-june-2012.html

 

 Which Is Worse – Fibromyalgia or Chronic Fatigue Syndrome?

By Karen Lee Richards, Health Guide Saturday, June 30, 2012

 A few weeks ago I received an e-mail from a friend who has ME/CFS. He included this humorous question and answer exchange:   Q: Which is worse – fibromyalgia or chronic fatigue syndrome? A: Whichever one you have.

 To read the rest, go to:

 http://www.healthcentral.com/chronic-pain/c/5949/154216/comments

 

 ProHealth E-Newsletter, July 3, 2012

 Breaking news: ME/CFS & severity definitively linked to mitochondrial dysfunction, cellular damage

A trio of UK-based researchers - Drs. Norman E Booth, Sarah Myhill, and John McLaren-Howard - published a breakthrough study in 2009 titled "Chronic Fatigue Syndrome and Mitochondrial Function."

Now they've released the result of their continuing study of 138 ME/CFS patients, all with mitochondrial dysfunction. They identify two major immediate causes of the dysfunction and different levels of severity, as well as subtypes "differentiated by how cellular metabolism attempts to compensate for the dysfunction."  To read the rest of the article and the articles list below:

 http://www.prohealth.com/em/EM070412C/index.cfm?slvor=10880.1067610.0.1.0.86766&eid=nmhenson@aol.com

  

ME/CFS News & Headlines in this newsletter:

 

Brain Study Discovers Why Pain Becomes Chronic in Some & Others Not

Doctors Find ME/CFS 'Recovery' Cases Often Just Less Severe Symptoms

The Struggles of a Young Person with ME/CFS: Student & Parent's Views

Thoughts on Chronic Illness & Sorrow: Grieving in Order to Heal

Why the ME/CFS Remissions/Relapses? Neuro-Immune Model May Explain

Remember to go here to have access to the list of articles:

 http://www.prohealth.com/em/EM070412C/index.cfm?slvor=10880.1067610.0.1.0.86766&eid=nmhenson@aol.com


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

Our Support Group Leader and Board Members:

 

- Our Support Group Leader is Kebbie Cannon 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.  His other site, which is primarily director toward helping your doctors treat these disorders, is  http://www.cfstreatment.info/

 

- Our Treasurer is Leslie Vann at llvann@usa.net

 

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

 

- Visit our web site at www.CharlotteCFS.org