Charlotte CFS/ME/FM Support Group Newsletter

for October 1, 2008

 
Hi Everyone!
 
Due to some technical difficulties - AOL does not offer a data base program so I have to "punt" with this newsletter, you may be receiving 2 copies this month. Please do let me know and I'll delete one of the names. Secondly, there may be a couple of you who asked to be removed and find yourself receiving the newsletter again. Please let me know, and I'll correct that.  If you wish to be removed, just send me a quick email and I'll delete you from distribution.
 
Nancy Henson  

September's meeting featured Lynn Bishop, Disability Attorney.   Lynn discussed many of the hurdles in applying for long term disability benefits.  We do have some handouts from Ms. Bishop that you can pick up when you attend a future meeting. You can also subscribe to her newsletter at www.lynnbishop.net .

October - Caregivers - This has always been a popular topic. I don't have the names of the individuals who will be presenting at October's meeting so be on the alert for the next newsletter that will have those names.

November - Social Security Benefits - Mr. John Heath will discuss social security disability and medicare issues.
 
December - Annual Christmas Party with our very own Chuck Lapp at the piano. For any of you who are new, we take this evening to kick back and enjoy some social time together. We bring finger foods or whatever you'd like to bring. Anything is fine. Or if you decide to come at the last minute and don't have anything to bring, that's OK to.  Just come! 
 
This E-Newsletter Topics
- CFIDSLink Announcements
- New Chemical Sensitivity Resource Guide
- Disability Guide
- Pepperoni Study 
- Importance of Rest!
- Angel Food Ministries
- Understanding Fibromyalgia
- How Biological Abnormalities Separate CFS from Depression
- New Fibromyalgia Research Organization
- Neurotransmitters in FM and CFS
- Timeline for Surviving the Holidays
- Enteroviral Myalgic Encephalomyelitis
- POTS
- Immunological Aspects of CFS
- Evidence of Staphylococcus Biofilm in CFS
Remember that our support group's web site is www.CharlotteCFS.org .
 
 
CFIDSLink Announcements
 

Grassroots Action Center Listserv

  The CFIDS Association of America brings you news of three announcements related to health policy:

- Dr. Elias Zerhouni, director of the National Institutes of Health, announced yesterday that he would be stepping down from his post effective October 1, 2008.

- President Bush has not yet signed a funding bill for the departments of Labor, Health and Human Services,

- The House also passed the National Pain Care Policy Act of 2008. The National Pain Foundation, led a coalition of organizations including the CFIDS Association of America, to introduce this legislation and secure a House vote before the 110th session of Congress ends. For more information, please visit www.painfoundation.org.

To keep up-to-date, subscribe to CFIDSLink at www.cfids.org .

 
 
 
Check out the New Chemical Sensitivity Resource Guide
This resource is generated by a state group in Chicago. But it is very interesting and may be helpful to someone.
http://www.cfccc.net/resourceguide.htm
 

A Guide for people who are preparing to apply for disability benefits:  

This guide is from the National CFS and FMS Assoc. in Kansas City.  This particular article may be particularly helpful for anyone beginning the social security disabilities "adventures!"
http://www.ncfsfa.org/Patients/ssbenefits.htm

Study: Pepperoni Can Trigger Pelvic Pain

 http://www.healthcentral.com/incontinence/news-263836-98.html?ic=6009
 
 
Rest is key to preserving your immune system (Mail on Sunday, 14 September 2008) 14-09-08 11:05  -- BY: CAROLE CAPLIN from ME Free For All.orgME

 

The importance of rest is often overlooked.

Last week I described how the immune system works as the body's defense against illness (At a low ebb? Your body is the best doctor, Mail on Sunday, 7 September 2008 -- http://www.mefreeforall.org/Display-news.216.0.html?&cHash=78648e1f36&tx_ttnews[backPid]=107&tx_ttnews[swords]=body%20at%20a%20low%20ebb&tx_ttnews[tt_news]=2494). Now I want to explore the best way to keep it functioning effectively.

Although food supplements can play a role, building your immune system is about more than stocking up on vitamins. Your body needs exercise, rest and hydration, as well as proper nutrition. To read more:  http://www.mefreeforall.org/Display-news.216.0.html?&cHash=bba8446692&tx_ttnews[backPid]=1&tx_ttnews[tt_news]=2509

 
Dr Teitelbaum's Latest E-Newsletter
 
http://www.endfatigue.com/web-newsletters/nl_40_09-16-2008.html

Angel Food Ministries

With a heart to help others and a generous spirit, Joe and Linda Wingo founded Angel Food Ministries in 1994 to provide food for friends and neighbors who were struggling financially. Today, they are still doing the same thing. The Angel Food program now is helping provide food relief to more than 500,000 families each month. To learn more about this:

http://www.angelfoodministries.com/

 
 
Understanding Fibromyalgia
This is a wonderful video for a newly diagnosed person and/or for a family member or friend.
http://www.itvisus.com/programs/hbhm/episode_903_UnderstandingFibromyalgia.asp 

How biological abnormalities separate CFS from depression - Katherine M. Erdman, MPAS, PA-C -- Katherine Erdman is assistant professor and assistant director, Baylor College of Medicine PA program, and a PA in the Department of Emergency Medicine at Lyndon B. Johnson General Hospital, Houston, Texas. She has indicated no relationships to disclose relating to the content of this article.

Chronic fatigue syndrome and depression share symptoms and may coexistbut thanks to new efforts spearheaded by the CDC, skilled clinicians can more easily tell them apart.

 Chronic fatigue syndrome (CFS), also called chronic fatigue immune dysfunction syndrome (CFIDS), is a multisystem illness characterized by a complex constellation of symptoms. CFS has long been controversial among health care providers and researchers, in part because of the difficulty of differentiating it from psychiatric illness. Much has been written about the underdiagnosis of depression,1,2 but care must be taken as well to avoid the overdiagnosis of depression in patients who have unexplained physical symptoms. Although comorbid depression is a common emotional response to any chronic illness, some patients with CFS are not clinically depressed. These patients are poorly served when depression is the only diagnosis they are offered.  To read more:

http://jaapa.com/issues/j20080301/articles/cfs0308.htm
 
 

Creation of an International Research Organization Moves Forward

ANAHEIM, Calif. (September 5, 2008)At a historic meeting, moderated by world-renowned researcher Robert Bennett, MD, prominent Fibromyalgia experts voted unanimously to continue discussions on the development of a new international professional organization during the Fibromyalgia Discovery Meeting. The two-day conference was held August 7-8, 2008 at the Airlie Center in Warrenton, Virginia. To read more:

http://www.fmaware.org/site/News2?page=NewsArticle&id=7625

 
 

Neurotransmitters in Fibromyalgia & Chronic Fatigue Syndrome - What's Going On in Your Brain? By Adrienne Dellwo, About.com; Updated: September 3, 2008; About.com Health's Disease and Condition content is reviewed by Kate Grossman, MD

Fibromyalgia (FMS) and chronic fatigue syndrome (CFS or ME/CFS) long remained mysteries to medical science, and we're just now getting a picture of what's going on in the body, and especially the brains, of people with these conditions. One thing that research has shown, time and time again, is that when you have FMS or ME/CFS, your neurotransmitters are out of whack. To read more:

http://chronicfatigue.about.com/od/treatingfmscfs/a/neurotranshub.htm?nl=1

 

Timeline for Surviving the Holidays (more from Adrienne Dellwo)

 http://chronicfatigue.about.com/b/2008/09/14/my-timeline-for-surviving-the-holidays-with-fibromyalgia.htm
 
 
Having a friend or family member with fibromyalgia or chronic fatigue syndrome is difficult. You may be facing extra burdens or a strained relationship, or even doubts that the person you care about is really sick. These are all normal issues, and the resources here can help you handle them. To read more:
 
 
From Co-Cure "Enteroviral myalgic encephalomyelitis - EvME" by Dr. Irving Spurr

A treatise on EvME by Dr. Irving Spurr who argues that "The enteroviruses, ubiquitous in nature, are responsible for a variety of human diseases ranging from mild gastroenteritis to fulminating multi-organ failure. They are the cause of myalgic encephalomyelitis, and it is no surprise that this disease has multi-organ involvement with protean manifestation."

http://www.meresearch.org.uk/information/keypubs/EvME.pdf
 
 
Postural orthostatic tachycardia syndrome is an under-recognized
condition in chronic fatigue syndrome.
 
 
The Immunological Aspects of CFS (From Autoimmunity Reviews, Italy)
 
"Similar disorders (as CFS) have been described for at least two centuries and have been differently named neurasthenia, post-viral fatigue, myalgic encephalomyelitis and chronic mononucleosis.  Recent longitudinal studies suggest that some people affected by CFS improve with time but that most remain functionally impaired for several years.  The estimated worldwide prevalence of CFS if 0.4-1% and it affects over 800,000 people in the US and approximately 240,00 patients in the UK.  No physical examination signs are specific to CFS and no diagnostic tests identify this syndrome. The pathophysiological mechanism of CFS is unclear.
 
The main hypothesis include altered central nervous system functioning resulting from an abnormal immune response against a common antigen; a neuroendocrine disturbance; cognitive impairment caused by response to infection or other stimuli in sentient people  The current concept is that CFS pathogensis is is aa multifactorial condition.  Various studies have sought evidence for a disturbance in immunity in people with CFS. An alteration in Cytokine profile, a decreased function of natural killer (NK) cells , a presence of autoantibodies and  reduced responses of T cells to mitogens and other specific antigens have been reported, The observed high level of pro-inflammatory cytokines may explain some of the manifestations such as fatigue and flu-like symptoms and influence NK activity." To read more:
 
 
 
From CoCure:   EVIDENCE OF STAPHYLOCOCCUS BIOFILM IN CHRONIC FATIGUE SYNDROME

S. E. Fry; Airpark Medical Center, Scottsdale, AZ.

Chronic Fatigue Syndrome (CFS) is characterized by unrelenting fatigue of greater than 6 months duration without evidence of other known disease. Its origin has been hypothesized to be either psychiatric or viral. Recent work has implicated coagulase negative staphylococcus as the etiologic agent. Culture studies to date have been inconclusive. One approach to confirm this hypothesis is to search for biofilm constituents. Lipoteichoic acid (Teichoic acid) is considered a constituent of Staphylococcus biofilm and the detection of antibodies to it have been in clinical use for nearly 20 years. The level of antibody has been used as an indicator of Staphylococcus infection and especially helpful in detecting Staphylococcus in endocarditis and osteomyelitis. The presence of Teichoic acid antibody in the normal population has been reported to be between 1-5%.
 
Twelve patients meeting the CDC criteria for CFS and Fibromyalgia were tested for antibodies to Teichoic acid. Two national reference laboratories both utilizing a radio-immunodiffusion assay were utilized. Two of the patients were male, the remaining ten patients were female, ages were between 18 and 61 years of age. A titer of 1:2 or greater was found in eight patients, of these, two were at a titer of 1:4 and two were at a titer of 1:8. This small sample displays evidence of elevated antibody to Teichoic acid in 66% of patients tested, far above the expected level in the normal population. This information further suggests that a Staphylococcal organism, with biofilm may be the causal agent in CFS and Fibromyalgia.
 
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