Charlotte CFS/ME/FM Support Group Newsletter

for April 14, 2014

 

Hi everyone,

Our April speaker this coming Thursday, April 17th, 7-8:30pm is Dr. Charles Lapp, our Medical Director and advocate for our support group here in Charlotte, NC.  We are extremely fortunate to have someone of his experience and knowledge right here in the Charlotte area.

Dr. Lapp recently attended an international ME/CFS conference in San Francisco.  He has written a report of what took place during that conference.  There will also be a Q&A time.

To read his newsletter, go to:  http://drlapp.com/news/me-letter-march-2014/ .  If you are not familiar with Dr. Lapp or his clinic, please go to his web site at www.drlapp.net for any information about Dr. Lapp, about the clinic, and how to get an appointment.

 

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 driveway 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). 

For this month only, we will meet in the Heritage Conference Room, which is located in the Sanctuary Bldg. rather than the CLAB where we normally meet.  The back entrance to get into the sanctuary building is under the carport in the back not too far from the building we normally use.  We will put up a few signs so that you know you are in the right place.  After you enter, walk to the hallway to the left (follow the signs) and we'll be in the first room on the left. 

Remember no perfumes so as not to make those with MCS ill and no smoking anywhere on the church grounds. Please note that we try to start wrapping up around 8:30-9:45 as another group uses the same room for a meeting at 9PM.  The room needs to be vacated by 9:00pm  prompt.

 

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Upcoming Meetings

 

May 15 - Gloria Smith -  Coordinator of the SolveCFS BioBank & Patient Registry.  More volunteers are needed for this project.  We will have Gloria speak and answer any questions you may have. And, you can go to BioBank@CFIDS.org or call her at 704-362-2343! 

 

June 19 - TBA - Kebbie has a speaker in mind to present information on more effective communication.

 

July and August - No regular daytime meetings.  We meet in the afternoon for luncheons at Panera Bread.  More details about this in forthcoming newsletters.

 

September   - A speaker who will talk with us about non-toxic cleaning products and more.

 

Note:  Always check the latest newsletter - there are 2 per month - to be aware of any last minute changes.

 

 

Topics in This Newsletter

 

- CFS Research Tries Crowdfunding

- Toward a Clearer Diagnosis of ME/CFS

- Brain Scans to Detect ME/CFS

- Pridgen Reports Fibromyalgia Antiviral Trial Results "Very Positive"

- The Best Exercise for ME/CFS & FM - Qigong

- Neuroinflammation

 

 

 

Research Tries Crowdfunding

 

By David Tuller, Buzzfeed, March 28,  2014 At a conference last week in San Francisco devoted to myalgic encephalomyelitis — the devastating illness more commonly and misleadingly called chronic fatigue syndrome — it was immediately clear that researchers from leading medical centers in the U.S. and abroad have been making tremendous strides in documenting immunological, neurological, cardiovascular, and other types of dysfunctions among patients. - See more at:

 

http://www.prohealth.com/library/showarticle.cfm?libid=18850#sthash.PEzvid5Q.dpuf

 

 

 

 

Date:    Fri, 4 Apr 2014 11:13:52 +0200
From:    "Dr. Marc-Alexander Fluks" <fluks@COMBIDOM.COM>
Subject: RES,NOT:
PET scans in CFS 2/2

Source: Riken
Date:   April 4, 2014
URL:    http://www.riken.jp/en/pr/press/2014/20140404_1/

Toward a clearer diagnosis of chronic fatigue syndrome

Researchers at the RIKEN Center for Life Science Technologies, in collaboration with Osaka City University and Kansai University of Welfare Sciences, have used functional PET imaging to show that levels of neuroinflammation, or inflammation of the nervous system, are higher in patients with chronic fatigue syndrome than in healthy people.

Chronic fatigue syndrome, which is also known as myalgic encephalomyelitis, is a debilitating condition characterized by chronic, profound, and disabling fatigue. Unfortunately, the causes are not well understood.

Neuroinflammation - the inflammation of nerve cells - has been hypothesized to be a cause of the condition, but no clear evidence has been put forth to support this idea. Now, in this clinically important study, published in The Journal of Nuclear Medicine,
the researchers
found that indeed the levels of neuroinflammation markers are elevated in CFS/ME patients compared to the healthy controls. 
To read more: 

 

http://www.riken.jp/en/pr/press/2014/20140404_1/

 

Brain Scans To Detect Chronic Fatigue Syndrome

Health & Medicine
April 8, 2014

A study shows that PET scans could potentially be used to diagnose chronic fatigue syndrome.

AsianScientist (Apr. 8, 2014) – Researchers have found that inflammation of the nervous system is higher in patients with chronic fatigue syndrome (CFS) than in healthy people.

The study, published in The Journal of Nuclear Medicine, suggests that using positron emission tomography (PET) scans to detect brain inflammation could be an objective diagnostic test for CFS.

CFS, which is also known as myalgic encephalomyelitis, is a debilitating condition characterized by chronic, profound, and disabling fatigue. Unfortunately, the causes of CFS are not well understood. Neuroinflammation – the inflammation of nerve cells – has been hypothesized to be a cause of the condition, but no clear evidence has been put forth to support this idea.  To read on:

 

http://www.asianscientist.com/health-medicine/neuro-inflammation-chronic-fatigue-syndrome-2014/

 

 

 

http://www.prohealth.com/library/print.cfm?libid=18837 
http://www.prohealth.com/library/emailArticle.cfm?libid=18837

Pridgen Reports Fibromyalgia Antiviral Trial Results “Very Positive”: Predicts New Approach Will Be “Game-Changer”

By Cort Johnson • www.ProHealth.com • March 25, 2014

 

Reprinted with the kind permission of Cort Johnson and Health Rising.

“We …feel this is a real game changer” – Dr. Pridgen

With 90% of the data from their big Fibromyalgia antiviral study in, Dr. William “Skip” Pridgen reported in the Tuscaloosa News that the results were ‘very positive’. Pridgen enthusiastically stated, “We feel we are on the right track and feel this is a real game changer,” and not just for Fibromyalgia.

“It is a tip of the iceberg. What we are discovering will accomplish so much more,” Pridgen reported, which surely means he believes his approach will work, perhaps in a modified manner, in Chronic Fatigue Syndrome, Irritable Bowel Syndrome, and similar disorders.

Pridgen’s antiviral trial began last year. It involves not one but two antivirals, one of which is believed to have a strong anti-inflammatory component. His is the first antiviral trial to occur in FM.

What makes this all the more remarkable is that it’s happening in a disorder that has received virtually no herpesvirus research (just two small studies in the late 1980s), and which involves a virus (herpes simplex virus) that even the Chronic Fatigue Syndrome community has shown little interest in. It’s being led by a surgeon who has studied fibromyalgia part-time and virologist with no experience in FM (but with extensive experience in herpes simplex viruses).

 

- See more at: http://www.prohealth.com/fibromyalgia/library/showArticle.cfm?libid=18837&B1=EM040914F&utm_source=EM040914F&utm_medium=em&utm_campaign=FM&slvor=11709.1150996.0.1.0.86766&eid=nmhenson@aol.com#sthash.EXj1I7hJ.dpuf

The ‘Best Exercise’ For Chronic Fatigue Syndrome and Fibromyalgia:

Laurie Hope on Qigong

By Laurie Hope on April 10, 2014

Note from Nancy:   For those of you who may be new to Chinese Medicine, it is NOT quackery. 

When I was able to afford accupuncture, I was relieved of one of my ME/CFS sypmtoms... dizziness. 

It only comes back when I over do or under great stress.  I also learned from an MD about herbs

that are extremely helpful.


Qigong is the best exercise I have found for Chronic Fatigue Syndrome and Fibromyalgia. Laurie Hope

 

What is Qi? (also chi, ch’i, ki) QiGong is about increasing one’s ‘vital force’. A recent study suggested people with ME/CFS had substantially lower vitality than people with heart failure. Chances are if you’re on this website you have some problem with qi. Qi is the Chinese name for the life force or vital energy that flows around and through our bodies, animating our cells and keeping us healthy. It is the same thing as ‘prana’ in yoga.

 

 When properly nurtured, qi is capable of extending beyond the human body to reach throughout the universe. What is Qigong? “There are infinite ways to move and strengthen qi” ‘Gong’ means practice or work.  Any practice that works to increase or balance the flow of qi can be called a qigong. It is said that there are 10,000 forms of qigong, which is the Chinese metaphor for infinite, so there are infinite ways to move and strengthen qi. This means that there is a qigong practice suited for everyone, even for people too ill to practice other forms of exercise. Qigong is practiced in Chinese hospitals and is an important part of traditional Chinese medicine.

 

There are qigong practices that require nothing more than lying down, breathing and directing the qi flow with your mind. There are specific gongs for specific illness, such as cancer, high blood pressure, or digestive problems. There are slow gongs, fast gongs, short gongs, long sequence gongs, shaking gongs and gongs that use sounds. There are spontaneous gongs where you allow your body to do whatever it feels like, trusting that the intelligence of your system will lead you to harmony. The important thing is to find those practices that work best for you.

Read more: The ‘Best Exercise’ For Chronic Fatigue Syndrome and Fibromyalgia: Laurie Hope on Qigong 
http://www.cortjohnson.org/blog/2014/04/10/the-best-exercise-fibromyalgia-chronic-fatigue-syndrome-laurie-hope-qigong/

 

 

From Co-Cure

 

Marked improvement of pain from long-term fibromyalgia with dextroamphetamine sulfate in a woman who failed to improve with conventional pharmacologic treatment

http://www.ncbi.nlm.nih.gov/pubmed/24707694

Clin Exp Obstet Gynecol. 2014;41(1):90-2.
Check JH, Cohen R.

Abstract

PURPOSE: To determine if treatment with the sympathomimetic amine extroamphetamine sulfate, which has been so effective in treating a variety of pain syndromes, including severe pelvic pain and interstitial cystitis in women with the sympathetic neural
hyperalgesia edema syndrome would also mitigate pain from fibromyalgia which was resistant to multiple therapies.

MATERIALS AND METHODS: Dextroamphetamine sulfate extended release capsules once daily was gradually increased to 25 mg per day in a woman with treatment resistant fibromyalgia of 20 years duration. 

RESULTS: Within a short time, the woman experienced dramatic relief of pain. Furthermore, her edema improved resulting in a 27 pound weight loss and her chronic fatigue improved.

CONCLUSIONS: Fibromyalgia can be effectively treated with an innocuous dose of dextroamphetamine sulfate.

PMID: 24707694 [PubMed - in process]

Increased risk of chronic fatigue syndrome following herpes zoster: a population-based study

http://link.springer.com/article/10.1007%2Fs10096-014-2095-x

European Journal of Clinical Microbiology & Infectious Diseases April 2014
Increased risk of chronic fatigue syndrome following herpes zoster: a
population-based study
S.-Y. Tsai, T.-Y. Yang, H.-J. Chen, C.-S. Chen, W.-M. Lin, W.-C. Shen,
C.-N. Kuo, C.-H. Kao

Abstract

Chronic fatigue syndrome (CFS) is a complex disorder accompanied by unexplainable persistent fatigue, in which several etiological factors exist, such as viral infections. Using the National Health Insurance Research Database (NHIRD) of Taiwan, this study evaluated the association between herpes zoster (HZ) infection and the risk of CFS, and examined the possibility of patients developing postviral fatigue effects, including the possibility of developing other unexplainable chronic fatigue conditions.

 

 

 

Neuroinflammation: Putting the ‘itis’ back into Myalgic Encephalomyelitis – Back to the Future For Chronic Fatigue Syndrome?

By Marco on April 12, 2014 (from Cort Johnson)

 

 

“Our results provide evidence of neuroinflammation in CFS/ME patients, as well as evidence of the possible contribution of neuroinflammation to the pathophysiology of CFS/ME.“

 

 ‘Show Me the Inflammation!’

 

It’s perhaps emblematic of a complex and difficult to nail down illness such as ME/CFS or CFS/ME (aptly illustrated by this uneasy compromise) that even the name has been a source of ongoing rancour since early clusters were attributed to outbreaks of epidemic ‘encephalitis’ or examples of mass hysteria. In fact the ‘itis’ in myalgic encephalomyeltis has often been an easy target for those wishing to downplay the seriousness of the condition.

 

The inability over many years to unambigously show encephalomyeltis (inflammation of the brain and spinal cord) made it difficult, to say the least, to counter the growth in usage of the unfortunate term chronic fatigue syndrome (or often just chronic fatigue). Even the UK ME Association’s own Dr. Shepherd has lately taken the pragmatic approach of using ‘encephalopathy’ rather than get into nitpicking arguments over terminology.

 

Read more: Neuroinflammation: Putting the ‘itis’ back into Myalgic Encephalomyelitis – Back to the Future For Chronic Fatigue Syndrome? 

 http://www.cortjohnson.org/blog/2014/04/12/neuroinflammation-putting-itis-back-myalgic-encephalomyelitis-back-future-chronic-fatigue-syndrome/

 

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

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

- Treasurer -Leslie Vann at llvann@usa.net

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

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

- Facilitator - Bethanie Massey at bethanieann@gmail.com

- 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.

 

- Visit our web site at www.CharlotteCFS.org

- www.DrLapp.net - 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 at www.cfidsselfhelp.org (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/ and related disorders along with supplements with proceeds of sales going to help ME/CFS/FM  http://www.prohealth.com/index.cfm